Organisation Organisation Policy Reference Reference level name Policy name date to autism to disability Relevant information
State Tasmanian Accessible Island: 2018 ✓ ✓ • The Department provides specialist services including Autism Consultants Government Tasmania’s • Support all people to access, participate and engage in learning and disability employment opportunities. ‘We aspire to create a culture of high expectations framework for and high achievement in the provision of quality inclusive and accessible action 2018 - education environments for people with disability.’ 2021 • Government will continue to: (a) Ensure that individual student accessibility issues are prioritised and the required works are completed within the annual capital and minor works programs; (b) Work collaboratively with school staff to map student pathways from Kindergarten to Year 12 and pre-plan required access provisions in advance of student commencement, where known • Government will: (a) Ensure all Department of Education staff work collaboratively to provide high quality inclusive and supportive learning opportunities for students with disability; (b) Promote the Disability Standards for Education 2005 and set clear expectations that Department of Education staff are required to meet their obligations by ensuring that students with disability can access and participate in education on the same basis as other students.
State Education Students with 2021 × ✓ • The Department is committed to embedding inclusive education in all school Victoria Disability environments for students with disability and additional needs • Inclusive Education: (a) Ensures that students with disability are not discriminated against and are accommodated to participate in education on the same basis as their peers; (b) Acknowledges and responds to the diverse needs, identities and strengths of all students; (c) Occurs when students with disability and additional needs are treated with respect and are involved in making decisions about their education; (d) Benefits students of all abilities in the classroom and fosters positive cultural change in attitudes and beliefs about disability, in and beyond the school environment; (e) Contributes to positive learning, engagement and well-being outcomes for students • Reasonable adjustments: When planning an adjustment for a student, the school should consult with the parent or carer(s) and the student, through the Student Support Group process. This process should apply to all students with disability or additional needs, not just those who are eligible for support under targeted funding programs.
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Organisation Organisation Policy Reference Reference level name Policy name date to autism to disability Relevant information
State Victoria State Victorian Autism N/A ✓ × • Framework for Improving Student Outcomes (FISO 2.0) includes six pillars: (a) Government, Education and Strategy Promote and celebrate autism inclusion and diversity at the whole school level; Education and Training (b) Build the capacity of school leaders and staff to meet the educational needs Training of autistic students; (c) Involve the student, families and experts in collaboratively planning for students’ education; (d) Support autistic students’ health and well-being; (e) Support autistic students’ individual education needs; and (f) Strengthen accountability and transparency for students with disability • Autistic students: (a) Are less likely to finish Year 12 than other students; (b) Often change schools to get their needs met; (c) Can be more likely to disengage from school • Autistic students are more likely to experience: (a) Communication and social differences; (b) Mental health challenges; (c) Learning difficulties; (d) Other conditions (i.e., intellectual disability, motor difficulties, epilepsy).
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Organisation Organisation Policy Reference Reference level name Policy name date to autism to disability Relevant information
State Victoria State, Inclusive 2016 ✓ ✓ • The government recommends: (1) Developing a clear inclusive education policy Education and Education for and framework; (2) Developing an Inclusive Schooling index that enables school Training all Students to self-assess inclusivity; (3) Developing an Inclusive Education Workforce with Disabilities Capability Strategy to better assess professional learning so students with and Additional disability are fully supported; (4) Rolling out existing professional learning Needs: The relevant to disability; (5) Assisting with capacity development; (6) Considering government’s how to harness new regional reforms to better access knowledge in each local response to area; (7) Developing options to support specialist schools to become “centres of the review of expertise”; (8) Providing guidance on how Education Support staff can be used the program for to support academic and behavioural outcomes of students with disabilities; students with (9) Developing collaborative approach to supporting students with disabilities; disabilities (10) Developing guidelines on personalise learning and support plans; (11) Developing tool that identifies students’ strengths and functional needs; (12) Implementing stronger system of accountability for outcomes of students with disabilities; (13) Providing interim funding for students transitioning from Year 6; (14) New funding model based on functional needs; (15) Improved access to support and expertise to meet the learning and support needs of students on the autism spectrum; (16) Provide additional funding to better support the needs of students with learning disabilities and autism; (17) Roll out of special needs plan; (18) Investigate early years screening for learning disorders; (19) Raise awareness and encourage support around dyslexia; (20) Implement a dyslexia and learning difficulties strategy; (21) Develop tiered funding model based on strengths-based functional needs approach; (22) Develop relationship with NDIA to ensure maximum alignment with NDIS as it evolves; (23) Develop strengths based functional needs approach to assessing student need; (24) Sufficient resources from department to implement the above recommendations; (25) Undertake regular consultation with education sector and community to inform development of reforms.
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Organisation Organisation Policy Reference Reference level name Policy name date to autism to disability Relevant information
State Victoria State Supported 2021 ✓ ✓ • Schools can access Department resources including teaching and support Education and Inclusion Schools resources to create autism-friendly environments for students and families Training • The Program for Students with Disabilities is a supplementary funding program that provides resources to schools to support the provision of education for a defined population of students with disabilities, including autistic students • Supported inclusion school model has two short-term objectives: (1) Increase opportunities for students with disability to attend a school closer to home, study alongside mainstream students and access specialist infrastructure and teaching expertise; (2) Respond to a growing demand for education options across Victoria, particularly for students with disabilities • Each student with a disability should have a Student Support Group comprising of the Principal (or nominee), the classroom teacher (in a primary school) or year level or well-being coordinator (in a secondary school), the parent/guardian/carer and, where appropriate, other education or health and well-being professionals. Students themselves should also be involved, as appropriate. • Each student with a disability must have an Individual Education Plan developed with their Student Support Group that sets out their long and short-term learning goals • All students require support when transitioning from primary school to secondary school and from secondary school to post-school options. Students with disabilities may need more intensive support and more time to prepare. The level of support and planning required may differ depending on the nature and severity of the student’s disability. During transition, there should be strong collaboration with families, joint planning between schools, proactive planning for post-school pathways. • Supported Inclusion Schools should: (a) Ensure that students begin career planning early and are supported by their career’s advisers, Student Support Group, Careers Coordinators, National Disability Insurance Agency planners, and other staff; (b) Provide students (including those with disability) with a variety of workplace learning opportunities
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• Supported Inclusion Schools will provide students with disabilities enhanced support to attend mainstream education classes (where appropriate) and receive additional support in specialised facilities including areas designed for targeted teaching and therapies. These schools build the capabilities of staff to respond to the diverse needs of their students, through appropriate curricula, organisational arrangements, teaching strategies, resource use and partnerships with their communities. The spaces are designed to support specific learning needs, with acoustics, lighting, resource access and physical comfort factors designed to address the needs of students with disability.
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3.3.4 Research evidence and policy/guideline gap analysis
In addition to the specific research gaps, there are gaps between what is discussed in the research and what is recommended in policy. Some examples of these gaps are highlighted below.
- Multiple policies and state the aim of providing high-quality education so as to support autistic children to develop to their fullest potential. Multiple policies also state the rights for all children to access and participate in education, with some states/territories specifically stating the right for inclusive education. However, the research review suggest that not all teachers feel confident or competent at supporting autistic students in their classroom, and concerningly, not all Australian teachers have positive attitudes towards supporting autistic students in inclusive settings
- Teacher knowledge and understanding of inclusion and/or autism is highlighted as a key area of action for multiple jurisdictions. The findings within the umbrella review strongly support improving teacher knowledge as a critical action, but research is needed to identify the best way to improve knowledge so that it also improves practice
- The research highlighted that educational professionals may have limited knowledge of how autism may present differently based on child characteristics, for example, in female students, in students who come from culturally or linguistically diverse families, or in students with different cognitive levels. Despite this being highlighted in the research as important for students, ensuring teacher understanding of such intersectionality is not explicitly addressed in policy
- Policies recommend that educational spaces should be designed to be supportive of the range of sensory profiles of the student population. However, there is little research which looks at evidence-based ways to teach professionals to create sensory-considerate spaces
- The majority of the autism-focussed research in education has taken place outside of Australia. Therefore, further funding for the research and implementation of resources is needed for these policies to be fully enacted.
3.3.5 Umbrella review: Postsecondary education
An umbrella review is a form of research that brings together the findings of all existing reviews (systematic and scoping) that report on a specific topic. The focus of this review was on a range of factors related to postsecondary education for autistic students. The terms used for the searches, and the number of articles identified, screened, and included, are provided in Appendix F-1 and Appendix F-2. The final umbrella review reports on 20 systematic reviews, four of which were led by Australian authors. All 20 of the systematic reviews were written in the last 9 years. The 20 systematic reviews collectively report on 341 individual studies.
The information and findings from the included reviews are summarised in the subsections below. When reporting on the number of people or participants in the review, this will be represented as $n =$ [number of participants]. When reporting on the number of reviews that considered a topic, this will be represented as $k = [number of reviews]$.
3.3.5.1 Participants within included reviews
In total, the reviews included over 206,098 participants (of which over 4,835 were autistic), with
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sample sizes for individual studies ranging from 1 to 154,837 (three reviews did not provide sample sizes). Only seven systematic reviews provided information on the gender of the participants. Most of the participants in these seven reviews were male (the average percentage reported ranged from 59% to 83%). Participants, or the case studies reported, ranged in age from 15 to 70+ years.
3.3.5.2 Quality of included reviews
The quality of the included systematic reviews was assessed using the JBI Critical Appraisal Tool for Systematic Reviews. This tool assesses the methodological quality of a systematic review. The maximum score is 33, which indicates a very high-quality systematic review. The average quality score for the 20 included systematic reviews was 22.35 (67.73%), with the quality score ranging from 11 to 30.
3.3.5.3 Topics of included reviews
The 20 reviews identified in the area of postsecondary education for autistic students can be summarised across three key topics. These were interventions, programs, and supports for autistic postsecondary students ($k = 17$ reviews); experiences of autistic postsecondary students and their support networks (e.g., family) ($k = 11$); and online learning environments and educational technology for autistic postsecondary students ($k = 1$). Some reviews discussed more than one topic. The key findings for each topic are presented in Table 20.
3.3.5.4 Research gaps
After reading the 20 reviews, the research team identified a number of key research gaps. These are combined with the relevant research gaps noted within the reviews themselves, and summarised in Table 20.
In brief, there is a need for more quantitative studies of postsecondary education experiences, interventions, and supports that include objective and thorough evaluation measures. Furthermore, there is a lack of research that investigates the effectiveness and impact of interventions, supports, and programs (such as peer mentoring programs) on autistic students’ outcomes relating to academic and personal changes. Additionally, there is a significant gap in the research pertaining to online learning environments and educational technology for autistic postsecondary students.
Aside from academic needs, the research highlighted that many autistic students may have support needs for non-academic areas, including mental health, social skills, and sensory needs. There was little empirical evidence in the reviewed research on the efficacy of mental health interventions for autistic postsecondary students and whether mentoring programs can significantly improve the outcomes for autistic university students who have related mental health conditions. There was also a lack of reported interventions for sensory sensitivities in the reviewed studies, though many students with ASD have indicated this is a concern.
Most of the systematic reviews (85%; 17 out of 20) focused on researching interventions, programs, and supports for autistic postsecondary students. The most identified intervention, peer mentorship programs, was explored in the literature through the lens of helping autistic students to adapt to postsecondary institutions. However, there is a clear need for research into how institutions should be (or are) adapting to suit the needs of autistic students. Additionally, there was limited research in the umbrella review that used longitudinal methods to evaluate the long-term effectiveness of
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interventions for autistic postsecondary students. Such research is needed to ensure educational adjustments and interventions support the students’ preferred career trajectories. More research conducted over a series of months and years is necessary, as is the use of rigorous pre-post measures to evaluate the impact of interventions on student experience and outcomes. Such evidence in this field could be used to inform universities’ use of evidence-based, effective interventions for autistic postsecondary students.
Overall, the research on autistic postsecondary students lacks inclusion of diverse populations in relation to gender, sexual identity, and language backgrounds. That is, most research involved students who identify as Caucasian, male, heterosexual, and English-speaking. Furthermore, few studies analysed a specific academic support despite many autistic students indicating they prefer these supports and that they find them useful. This may highlight the need for participant preferences to be given more consideration when designing supports for postsecondary students.
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Table 20: Umbrella review findings for postsecondary education
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Interventions, programs, and supports for autistic postsecondary students | $k = 17$ (Dallas et al., 2015) (Morris et al., 2022) (Anderson et al., 2017) (Nachman, 2020) (Flegenheimer & Scherf, 2022) (Furuhashi, 2021) (Anderson et al., 2019) (Nguyen et al., 2020) (Paskins et al., 2018) (Kuder et al., 2021) (Stark & Lindo, 2022) (Duerksen et al., 2021) (Gelbar et al., 2014) (Widman & Lopez-Reyna, 2020) (Zeedyk et al., 2016) (Davis et al., 2021) (Kuder & Accardo, 2018) |
• Frequently reported interventions include: • Academic: eliminate discomforting sensory stimuli, priority in choosing seats, exam supports (e.g., private room, extra time, permission to wear earplugs), note taking accommodations (e.g., use of laptops, recorded lectures, lecture notes, use of a note taker), organizational supports (e.g., color-coded binders/folders, calendar/organiser, alarms/reminders), group work facilitation, tutor, extended deadlines, coursework/curriculum modifications, early registration, reduced course load, calculator, and frequent breaks • Non-academic: Peer mentoring was the most reported non-academic support. Other non-academic supports included: • mentorship, group therapy, video self-modelling, cognitive behaviour therapy (CBT), peer support, biofeedback, skill building, transition facilitation and programs, social skills support, self-advocacy skills support, counselling, parent involvement, problem solving skills lesson, (cognitive) behavioural interventions, social support group, social stories, disability teams, communication support, and emotion regulation supports • Course waivers and course substitutions were suggested as being potentially helpful for autistic postsecondary students • The majority of autistic postsecondary participants were satisfied with the interventions; however, responses differed within and between interventions, making it difficult to draw general conclusions • Peer mentoring programs provide individualised support for students’ needs. Generally, positive outcomes were reported in various domains such as social skills, academic performance, and sense of belonging • Interventions largely focused on social skills • Interventions generally had high reported satisfaction rates • Supports were often incongruous with needs and produced idiosyncratic benefits |
• Need for individualised interventions and novel solutions for autistic postsecondary students and high-quality evaluations of these programs • Studies often rely on (subjective) participant feedback, with little integration of objective measures • Lack of research on evaluation of outcomes relevant to academic success or long-term independence • Lack of research on family/parental support and family involvement in postsecondary settings • Lack of supports around career objectives/development, learning about job interests, and trajectories/pathways to college • Limited research examining how stress is addressed • Parents identified a need for transition services • Need for academic institutions to provide psychological supports for autistic postsecondary students • Lack of research on academic and faculty supports • Most postsecondary institutions provide traditional academic supports while non-academic supports and resources are often inadequate • Lack of research investigating the effectiveness of programs, supports, and interventions, especially on the effectiveness of peer mentoring programs and the impact they have on student outcomes (academic and non-academic) • Lack of cooperation between support services such as university disability services, counselling centres, students, and families |
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| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Experience of autistic postsecondary students and their support networks (e.g., family) | $k = 11$ (Adams et al., 2019) (Dallas et al., 2015) (Widman & Lopez-Reyna, 2020) (Toor et al., 2016)* (Nuske et al., 2019) (Flegenheimer & Scherf, 2022) (Anderson et al., 2017) (Kuder et al., 2021) (Davis et al., 2021) (Gelbar et al., 2014) (Nguyen et al., 2020) *note: only this one review focused solely on experiences; 9 also included interventions and one article focused on experiences and online learning |
• Challenges related to experiences of autistic students (and their support networks) included: • Autism-specific challenges • Self-disclosure and awareness • Mental health and well-being • Autistic students reported to experience social, emotional, communication, and sensory difficulties which impact all aspects of their postsecondary education • Over 50% of autistic postsecondary students experience a mental health condition. Autistic postsecondary students reported significantly more mental health difficulties than non-autistic students, which they report as having a significant effect on their success in university, both academically and socially • Anxiety is the most commonly reported experience of postsecondary autistic students, followed by loneliness and depression • Autistic postsecondary students often feel prepared academically but have difficulties with daily living and social skills • Some students experience isolation/marginalisation (e.g., peer rejection), tiredness, overwhelmed, as well as housing and roommate concerns • Poor self-advocacy skills make it difficult for autistic postsecondary students to access available supports |
• Research needs to explore lack of awareness and understanding of autism among academic and professional staff in postsecondary education settings • Need to develop and evaluate proactive mental health interventions and services that are accessible to postsecondary students • Need to explore methods to support postsecondary autistic students’ social inclusion and daily living skills • Research should explore methods for improving autistic students’ self-advocacy skills, especially in relation to accessing the required supports |
| Online learning environments and educational technology for autistic postsecondary students | $k = 1$ (Adams et al., 2019) |
• Only one systematic review focused on online learning for autistic postsecondary students. The review included four studies (three case studies) on this topic • In one study, almost half (47.4%) of the students ($n = 19$) who studied online preferred online compared to face-to-face study • In two case studies, the students reported that face-to-face learning provided clearer direction, which resulted in more confidence in the learning process as opposed to online learning • Online learning tools included discussion boards, learning management systems, library, Google advanced search, and email |
• Lack of research that examines online learning environments and educational technologies for autistic postsecondary students • Impact of course design on autistic postsecondary students’ needs further investigation |
Note. *all other groups that have not been identified separately
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3.3.6 Policy and guideline review: Postsecondary education
An overview of state and federal postsecondary education policy as it relates to autism and broader disability is provided below. Several combinations of the following search terms: “tertiary education”, “postsecondary education”, “training”, “vocational training”, “skills”, “university”, “autis/m/tic”, and “policy” were entered into state and federal education department pages to source key documents. A general search was also conducted, with the same search terms, to ensure all relevant documents were identified. Policies or guidelines were only included if they were current or had not yet been superseded. Note that for this review, organisational policies (e.g., of higher education providers) have not been included. Policies often identify the need for government employees who work alongside colleagues or customers/clients with disability to gain additional education in the support of people with disability, but this is not the focus of the review. Similarly, policies with specific reference to autism more commonly addressed early, primary, and secondary education, which have been addressed in the relevant sections of this report. This review does include some reference to transition from high school and to career supports at this stage of education but is primarily focused on education and training related to work readiness. It is important to note that policies written to address higher education (e.g., the NSW Higher Education and Tertiary Policy) do not refer to disability and inclusion. So, this policy review summarises federal and state disability plans or strategies where postsecondary education in mentioned.
None of the state level policies summarised below specifically refer to autism. Education and training, as a pathway to meaningful participation, is a key strategic priority within all mentioned disability strategies and plans (see Table 21). Only one policy initiative document identified in this review referred specifically to autism, being the Australian Government Response to the Select Committee on Autism (report): Services, support, and life outcomes for autistic Australians. This policy initiative considers key priority areas including improvement of education for autistic people as part of the development of the National Autism Strategy (this document). The policy document includes guidelines around meeting the needs of autistic students by increasing understanding among higher education staff, promoting autism-friendly campuses and information, and the adoption of autism inclusion and peer mentoring programs. Several postsecondary education providers have developed disability action plans and do have many initiatives to support a neurodiverse student body. For example, Curtin University Specialist Mentoring program is one of the first and largest peer support programs designed by, and for, autistic students. Similarly, TAFE and Apprenticeships Australia have also implemented disability action plans. For example, the Disability Australian Apprentice Wage Support aims to encourage employers to mentor people with disability during their apprenticeship. However, limited education provider policy specific to autistic students is likely influenced by the lack of autistic-specific policy and guidelines at the state and federal level.
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Table 21: Policy and guideline review findings for postsecondary education
| Organisation name | Policy name | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|
| Australian Government (Federal) | Australian Government response to the Select Committee on Autism (report): Services, support and life outcomes for autistic Australians 2022 | ✓ | ✓ | • Apply an autism lens to ensure the Disability Standards for Education meet the needs of autistic students • The Equity in Higher Education Panel to include a specific focus on the needs of autistic students with increase in autism understanding among staff, autism-friendly campuses and information, and widespread adoption of autism inclusion and peer mentoring programs • For a transition to work road map to be developed to establish stronger links between school, universities, and employers and to embed evidence-based transition programs. |
| Australian Government (Federal) | Australia’s Disability Strategy 2021-2031 | × | ✓ | • An overall outcome for people with disability to achieve their full potential through education • Prioritises improvements to pathways and accessibility • Prioritises increased opportunity to participate in accessible and inclusive lifelong learning. |
| State Government (WA) | A Western Australia for Everyone; State Disability Strategy 2020 to 2030 | × | ✓ | • Focus on strong pathways to work and economic participation via partnerships with students, industries, and community • Curriculum, skills development, and learning opportunities to be tailored to the diverse range of needs and that support their individual career aspirations. |
| State Government (SA) | Inclusive SA; State Disability Plan 2019 to 2023 | × | ✓ | • Promote inclusive places of study that provide pathways to meaningful and inclusive employment and volunteering opportunities • State education and training sectors to support inclusive education culture and practice that are personalised • Data to measure percentage participation in education and training • Explore pathways from education and training settings to post learning opportunities. |
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| Organisation name | Policy name | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|
| Territory Government (NT) | Northern Territory Disability Strategy 2022 to 2032 Northern Territory Disability Strategy Action Plan 2022 to 2025 |
× | ✓ | • Education to meet individual lifelong needs • Support school leavers transition to further education • Specific reference to Charles Darwin University Disability Inclusion Programs. |
| State Government (VIC) | Inclusive Victoria State Disability Plan (2022-2026) | × | ✓ | • Education to be accessible, inclusive, and linked to employment outcomes • To link industry engagement with school graduates for career pathways • Specific reference to TAFE disability inclusion strategy. |
| State Government (TAS) | Accessible Island Tasmania’s Disability Framework for Action (2018-2021) | × | ✓ | • To support the transition from school into post-school education, training, or employment • Specific reference to TasTAFE compliance with Disability Standards for Education 2005 • Selection and enrolment procedures should not discriminate • Provision of specialist staff to coordinate support, comprehensive range of reasonable adjustments that lead to learning and assessments that are fair, flexible, valid, and reliable • Connect schools with post-school options • Grow flexible, high-quality, and innovative VET opportunities. |
| State Government (QLD) | All Abilities Queensland: Opportunities for All State Disability Plan (2017-2020) | × | ✓ | • Equal access to education and learning across all stages of life. |
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3.3.7 Community views, research evidence, and policy/guideline alignment and gap analysis
As well as the research gaps identified as part of the research landscape mapping, the gap analysis (see Figure 4 for process) allows comparison of the current state (predominantly based upon the community views survey analysis but also some findings of the umbrella review and policy review) to an improved future state (based upon community views around what is working well, policy review, and some umbrella review findings). Of note is that the umbrella review for primary and secondary education focussed on teacher knowledge, attitudes, and training.
Figure 4: Gap analysis: Current to improved future state
As few respondents in the community views survey commented specifically on postsecondary education, further work is needed to identify community and professional views on the experiences of autistic students in postsecondary education settings. This would include ideas on how best to support the needs of autistic students.
The gap analysis work for education highlighted the following elements that need to be addressed in order reduce the problems experienced by autistic people:
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3.3.7.1 There is a need to improve the level of autism knowledge and understanding of professionals working in primary, secondary, and postsecondary educational settings
Current state
Almost one in three people who completed the education section of the community views survey highlighted that those working in educational settings (teachers, leaders, support staff) lack knowledge of autism (or broader neurodiversity), its presentation, and how it impacts learning or education. Of note is that this problem was reported by 37% of those working in educational settings (compared to 30% across the entire sample). The community views survey also identified a lack of understanding of autistic students’ social preferences as a problem within educational settings and a focus on behaviour as something to be modified, rather than understood and supported.
The research review findings align with this. These indicate that teacher knowledge of autism significantly varies, and one review describes knowledge levels as “low to moderate”. The reviews also indicate that teachers have even more limited knowledge of how autism presents in subgroups, such as females. Teacher training on autism was described as “inadequate” in one review. Little is known about the autism knowledge or autism training of postsecondary educators. The research review also highlights the importance of teacher knowledge of autism; autistic students report that their teachers’ knowledge of autism impacts the quality of the education they receive.
Improved future state
The need for professional development (as a way to increase knowledge and capability of educators) on a range of disabilities is noted in federal and state/territory-based policies (e.g., Disability Standards for Education, 2005, “Inclusive Education for Children and Young People with Disability in ACT Public Schools”, 2021). The NSW Disability Strategy specifically states the need for core, advanced, and specialist professional learning. There is a need for postsecondary policies to guide this area in these settings. The community views on what would reduce the problems that autistic people face in educational settings highlighted a need for pre-service and in-service training on autism, not only for the educators but for all staff working in schools (recommended by 41% of respondents). Additionally, there was a recommendation for broader initiatives which aim to increase educator and community acceptance of autism and tolerance of diversity, which would then have a positive impact on the understanding of autistic students’ education.
Steps that can be taken to move from the current to the improved future state include:
- Co-development (i.e., developed collaboratively with autistic people) and co-delivery (i.e., delivered collaboratively with autistic people) of evidence-based autism-specific training that is relevant and accessible to all staff working in all educational settings. This could move people from understanding some behaviours or presentation of autistic students from that of disorder (therefore needing to be modified) to that of diversity or difference (which can be accepted and celebrated). This could be incorporated into teacher pre-service training as well as being part of standard onboarding training so that a baseline level of knowledge is held by all those in educational settings. The effectiveness of this could be supported by relevant federal and state policymakers suggesting or mandating completion of such training within policy. For postsecondary educators, there may need to be site-specific or institution-specific ways to deliver the training to educators
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- Co-development and co-delivery of specialised training for professionals whose role would benefit from specific knowledge of autism; this would align with the tiered training approach noted in NSW policy
- Broader community initiatives which aim to promote understanding, acceptance and celebration of diversity. These can include media messaging, positive representations of autistic and neurodivergent people in the media, and system-wide (e.g., school, workplace) programs or interventions.
3.3.7.2 There is a need for sensory-considerate schools and educational
settings
Current state
The community views survey highlighted how school or learning environments can be overwhelming for those with sensory processing challenges, and how this then impacts upon autistic students’ ability to learn. This may be downstream from the community view that schools are set up for neurotypical students (and staff), and others not having knowledge or understanding of autism to reflect on the impact that such settings can have on autistic people. The research review for postsecondary education highlighted how autistic students’ sensory difficulties impact all aspects of their postsecondary education.
Improved future state
Some policies (e.g., Strengthening Inclusive Education in ACT Public Schools, 2021) make specific reference to making adjustments to the physical environment to promote inclusion and ensure students feel welcome and included in their schools. Others (e.g., Victorian State Government “Support Inclusion Schools”, 2021) specifically state that acoustics, lighting, and comfort factors of learning spaces need to be designed to support specific learning needs of students with disabilities.
The community survey responses suggested that schools should be designed to minimise sensory overwhelm, and offer spaces where autistic people feel safe and comfortable. The responses recognised a need for additional funding for such changes to be made. There was also a suggestion of active consultation with autistic people and employing more autistic staff, both of which would help to achieve the aim of reduced sensory input settings. The suggestions of schools having additional staff (or fewer students) and there being more collaboration, communication, and planning between educational staff, the autistic student, and their supporters, are also elements that could help to work towards the future state of reduced sensory input learning spaces.
Steps that can be taken to move from the current to the improved future state include:
- Guidance for schools (which includes input from state education departments) on how to provide sensory-supportive spaces for autistic students. This should include information on how to provide such spaces within each classroom, so that students do not necessarily have to leave the classroom and miss out on learning or social opportunities
- Information and resources to support those working in learning environments to conduct environmental audits, including noise and light levels. The resources can suggest accommodations/adjustments that can be made to adjust areas that may pose challenges for autistic people
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- Explicit invitation and permission for autistic people to use sensory supports in school settings, should they feel this would be beneficial for them.
- Co-development of methods for autistic people within educational settings to provide insight into sensory supportive and non-supportive elements of their learning environment.
3.3.7.3 There is need for those working in educational settings (including
postsecondary settings) to provide adjustments, accommodations, and supports (including adjustments to instructions and assessments) to enable autistic students to participate, learn, and belong
Current state
The definition of inclusive education used in many of the policy review documents describes an educational setting where all students can access and fully participate in learning, alongside their similar-aged peers, supported by reasonable adjustments and teaching strategies tailored to meet their individual needs. Almost a quarter of people who completed the community views survey highlighted that a lack of adjustments or accommodations for autistic students was a problem that autistic people face when accessing education. Additionally, many respondents noted that teachers do not use instructional methods, pedagogy, or assessment methods that take into account autistic learning profiles and needs.
The post-secondary research review highlighted that supports provided to autistic university students were often incongruous with needs and produced idiosyncratic benefits. This may explain some of the high dropout rates reported for autistic students in postsecondary settings. The research review also highlighted that when supports are available, they may not be effectively accessed by autistic individuals due to challenges with self-advocacy and anxiety.
Improved future state
The majority of state/territory policies explicitly state that students with a disability are entitled to reasonable adjustments. Some (e.g., NSW) state that they are “critical” to supporting students with disability to access the same curriculum and syllabus outcomes as their peers. Most noted that ajustments or accommodations need to be implemented in consultation with the autistic student and their family members. The focus is upon the teacher to adapt to the child; for example, the NSW Inclusive Education policy states that educational staff should “change how they teach to meet the needs of students with disability” and the ACT Strengthening Inclusive Education Discussion Paper states that teachers need to be flexible in the delivery of education to ensure access for students with diverse needs.
The community views survey recommended that broader use (and consistent use) of accommodations, adjustments, and supports would help to reduce or remove some of the problems autistic people experience in the educational setting. A quarter of respondents also stated that education works well for autistic people when accommodations are made and the appropriate support is provided. An additional 16% of people felt that educational settings work well for autistic people when educators collaborate with the autistic student and their family, with some providing specific examples of how this works best for planning accommodations and adjustments.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 141 What we found – Education
Steps that can be taken to move from the current to the improved future state include:
- Introduce “teaching to diversity” as the norm within schools and set expectations that each lesson will be proactively designed to cater for diverse learning preferences and needs. Pre- service teaching qualifications could include assessments which assess teachers’ ability to proactively plan lessons which cater for diverse learning preferences and needs
- Co-development of professional development resources which explain the most frequent adjustments or accommodations and why they can enable autistic young people to access the curriculum. This could be offered in pre-service teaching qualifications but also offered as ongoing training as it would likely be updated and accessed by educational staff other than teachers (e.g., university lecturers)
- Co-development of professional development/training (which includes practice-based assessments) that explains how common cognitive and/or emotional experiences of autistic people may impact a student’s ability to be successful with standard pedagogy, instruction, or assessment processes. The practice-based learning aspect would help teachers or educational staff to gain experience and feedback in adapting and tailoring pedagogy, instruction, and/or assessment processes to be more accessible (and therefore inclusive) for autistic students
- Co-development of interventions or strategies that autistic students can learn and use to build self-advocacy for adjustments and supports, tailored to primary, secondary, and postsecondary settings
- Clear methods (which are explicitly taught) for autistic students to communicate to others (e.g., parents, special educational needs coordinators) when adjustments or accommodations are not provided. This would help to identify problems with accommodations not being provided early on, and could identify if there are specific times or subjects where the accommodations are not being provided
- Standardised brief, easy to understand accommodations/adjustment action plan documentation in the form of a quick “checklist” which could be read by any teacher taking any lesson. The design would ensure that it is easy for staff and students to understand. It would clearly state the accommodations/adjustments that will be provided, in which subjects/ lessons, and until when the accommodation/adjustment is to be provided (review date). This would also explicitly state that the accommodations/adjustment cannot be changed until a review, and only when the student and family input has agreed to the change. The description of why, and the goal that the accommodations/adjustment is helping to achieve, would still be described in a student’s learning plan.
3.3.7.4 There is need for improved inclusive education founded on
acceptance of diversity that extends beyond the classroom and into school systems, processes, peer groups, and the broader community
Current state
The ACT Strengthening Inclusive Education discussion paper within the policy review states that placing students with disabilities within mainstream classes without accompanying structural changes to, for example, organisation, curriculum, and teaching and learning strategies, does not
Research evidence, policy and landscape mapping to inform the National Autism Strategy 142 What we found – Education
constitute inclusion. As noted above, the community views survey results highlighted that many autistic students are not receiving the reasonable adjustments or tailored teaching strategies to meet their needs). However, the community views also highlighted that autistic students also experience problems in relation to structural and systemic expectations of schools (e.g., rules, routines, expectations), with some preferring to attend special education schools rather than mainstream settings Additionally, the community views survey highlighted a problem in that autistic students have to engage in a curriculum that is based on neurotypical standards and cannot be adjusted. Bullying (including bullying by staff) was also noted as an issue for autistic people in education settings. Within postsecondary education, similar challenges with university structures and social elements of university (including bullying) were also noted.
The postsecondary research landscape mapping highlighted that while postsecondary peers may play an important role in supporting autistic students, limited research has explored evidence-based methods for building understanding of autism among these groups.
Improved future state
Now that this work has documented the impact of educational systems and processes on autistic students being able to access the curricula and education, it is important that steps are taken to address this into the future. The policy review highlights that the Disability Discrimination Act (1998) states that it is unlawful for an education provider to discriminate by developing curricula which has content that will exclude a person or place the person to any detriment. State-based inclusive education policies indicate that all students, including those with a disability, should be able to access, participate in, and fully engage in curricula alongside their peers (e.g., Queensland Department of Education Inclusive Education Policy 2021) and are “included in a way that suits them” (ACT Inclusive Education for Children and Young People with Disability in ACT Public Schools, 2021). The Review of the National School Reform Agreement (2022) highlighted that schools should strive to eliminate discrimination, which aligns with multiple state policies.
The community views survey suggested that collaboration and consultation with autistic and/or neurodivergent people, including having autistic and/or neurodivergent people working in policy and practice in education, could help to address some of the problems that autistic people face in relation to education. This could also assist in identifying way to enhance inclusive education in mainstream settings. The community views survey highlighted that educational settings work well for autistic students when systems and processes are adapted to meet the needs of autistic students, for example, allowing flexible attendance, delivery modes, off-campus learning, and amended session structures.
Steps that can be taken to move from the current to the improved future state include:
- In addition to “teaching to diversity” noted above, there should be proactive planning for diversity in terms of curricula, systems, and processes. This is relevant to primary, secondary, and postsecondary settings.
- Discussions with the community and Departments of Education regarding personalisation of attendance/engagement requirements for autistic students
- School-wide or university-wide initiatives which focus on acceptance of diversity and minimising of bullying (for a UK resource see anti-bullyingalliance.org.uk/sites/default/files/ uploads/attachments/Autism and bullying guide 202023_FINAL.pdf). This would be further
Research evidence, policy and landscape mapping to inform the National Autism Strategy 143 What we found – Education
- impacted by similar community-wide initiatives which aim to enhance community respect and value for diversity. Any such strategy should include a clear pathway where autistic students feel safe and supported to report bullying or discrimination, and where they are able to know action will be taken
- Provide guidance and information (based on research) to educational settings as to the benefits and challenges of different types of learning approaches that are effective for autistic students, including online learning environments for all educational settings.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 144 What we found – Education
3.4 Employment
3.4.1 The “1,000 Insights” community views survey
A total of 526 respondents answered at least one of the questions on employment. This included 305 autistic people and 313 family members or carers of autistic people. The 10 most frequently reported responses are detailed within this section. On occasions when there are multiple responses with the same frequency in the tenth position, the total number of responses reported will be greater than 10 to ensure all categories with equal frequencies in the tenth position are represented. However, the full list of response codes for each question within the employment domain is available in Appendix G-1.
The tables for each question describe the response categories (with example participant responses) in order from the most frequently reported to the least frequently reported. For each category, percentages are provided to indicate the proportion of a respondent group whose response reflected the specific category. These groups are: (a) the entire sample (i.e., everyone), (b) autistic people, (c) family members/caregivers of autistic people, and (d) all respondents who are not represented in one of these groups.
3.4.1.1 Problems experienced by autistic people in relation to employment
A total of 526 respondents opted to answer this question on employment. This included 305 autistic people and 313 family members or carers of autistic people. The problems experienced were coded into 17 categories, which fall under the following eight broad areas:
- Lack of education and awareness about autism in the workplace, which can lead to discrimination, stigma, stereotyping, and bullying in the workplace
- Support from employers with flexible working arrangements
- Problems with fitting in the workplace due to communication and sensory barriers
- Finding a job and navigating the process related to it
- Access to support and training if required in the workplace
- Access to work environments developed considering the needs of autistic people
- The fatigue of navigating the job activities and masking
- Being able to have promotions and get leadership roles.
Table 22 ranks the 10 problems that autistic people experience in relation to the employment service (based on the survey responses). The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem. Note that respondents often identified within multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the number of respondents in subgroups exceeds the total number of all respondents.
Of note is that these data show that approximately:
Research evidence, policy and landscape mapping to inform the National Autism Strategy 145 What we found – Employment
1 in 3 respondents highlight that autistic people get discriminated, stigmatised and bullied at work.
1 in 3 respondents highlight that autistic people cannot access a flexible workplace or support at their workplace.
Almost 1 in 3 respondents highlight that autistic people find navigating the social interactions and communications at work challenging.
Nearly 1 in 3 respondents highlight that autistic people feel there is a lack of understanding about autism and the needs of autistic people at workplace.
1 in 4 respondents highlight that autistic people find the process of finding a job challenging.
146 What we found – Employment
Table 22: 10 most frequently reported problems experienced by autistic people in relation to employment
| Rank | Problems experienced by autistic people in relation to employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 524$ |
Autistic people $n = 305$ |
Family member/caregiver of autistic person $n = 313$ |
Other respondent groups* $n = 250$ |
|||
| 1 | Experiencing discrimination, stigma, stereotyping and bullying (e.g., autistic people are experiencing discrimination, stigma, stereotyping and bullying and this is affecting their ability to gain and/or maintain employment) |
“Discrimination in the workplace. Employers will not accept difference as a part of the application process, and if they do, you are shoved into some sort of “autism appropriate” occupation.” (ID 935) | 31% | 32% | 30% | 33% |
| 2 | Access to flexible work environment and supports from employers (e.g., autistic people are having difficulty accessing supports or flexibility in the workplace that enable them to work well) |
“Workplace accommodations that are being asked for are being denied, ignored or “forgotten” about.” (ID 162) “Lack of freedom in some workplaces to do work in way that suits (e.g., everyone having to do work in same way and in same place rather than having freedom to work in quiet space or in way that still gets job done but feels more natural to the autistic person).” (ID 1022) |
30% | 32% | 32% | 35% |
| 3= | Challenges of navigating the neurotypical socialisation governing workplaces (e.g., it can be difficult for autistic people to “fit in” at work because the way they communicate and socialise may be different) |
“Being misunderstood, and considered ‘rude’ in the workplace, for example from not saying hello to everyone in the morning, or being too blunt with others.” (ID 1322) | 27% | 29% | 24% | 27% |
| 3= | Lack of understanding about autism and the capabilities and needs of autistic people (e.g., many employers and co-workers have very little knowledge about the strengths and needs of autistic employees) |
“Very little understanding concerning autism with employers.” (ID 452) | 27% | 23% | 29% | 27% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 147 What we found – Employment
| Rank | Problems experienced by autistic people in relation to employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 524$ |
Autistic people $n = 305$ |
Family member/caregiver of autistic person $n = 313$ |
Other respondent groups* $n = 250$ |
|||
| 5 | Navigating how to find a job and its related processes (e.g., attending interviews etc can be challenging when you may not communicate and behave in the same way as neurotypical people) |
“Speaking for myself, getting though an interview to get a job felt like a major challenge, why I haven’t changed companies in many years. Small issues for social norm like struggling with eye contact and small talk through to talking about self and thinking on the spot, topped off with rejection sensitive dysphoria.” (ID 911) | 24% | 27% | 27% | 22% |
| 6 | Workplaces not suitable for autistic people (e.g., autistic people often feel uncomfortable in their workplace) |
“Environmental barriers such as open plan offices, noisy and bright environments, no options for low-sensory spaces to work in or have breaks in.” (ID 1494) | 12% | 13% | 13% | 13% |
| 7= | Workplace not accommodating for sensory issues (e.g., the sensory issues of autistic people are not taken into account and accommodations are not always made by employers) |
“Working environments are not set up to accommodate individuals with sensory issues (uncomfortable chairs, loud music, open offices, fluorescent lights.” (ID 1215) | 10% | 13% | 9% | 11% |
| 7= | Keeping a job and meeting its requirements (e.g., autistic may have challenges in keeping a job and meeting the usual requirements expected of employees) |
“Maintaining employment due to demands that lead to Autistic burnout living.” (ID 1330) “Work schedules not accommodating for periods of regulation after intense periods of high social demand.” (ID 602) |
10% | 12% | 9% | 10% |
| 9= | Lack of training about working with an autistic person (e.g., most employers and work colleagues do not have any training in how to interact and work with autistic people) |
“Employers/Employees not taking the time to actively listen, learn and understand the person, how they see things.” (ID 1285) | 9% | 6% | 8% | 7% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 148 What we found – Employment
| Rank | Problems experienced by autistic people in relation to employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 524$ |
Autistic people $n = 305$ |
Family member/caregiver of autistic person $n = 313$ |
Other respondent groups* $n = 250$ |
|||
| 9= | Limited job opportunities for autistic people (e.g., job opportunities for autistic people may be limited) |
“Hard to get employed sometimes due to many reasons such as presenting awkward/shy/weird in interviews, or feeling anxious to apply for jobs in fear of the unknown— in my case, it was easy to get employed for a job I applied for but I found that I burnt out very quickly and had to quit after 6 months” (ID 1472) | 9% | 6% | 10% | 10% |
Note. *all other groups that have not been identified separately
Research evidence, policy and landscape mapping to inform the National Autism Strategy 149 What we found – Employment
3.4.1.2 Factors causing the problems experienced by autistic people in relation to employment
A total of 490 respondents opted to answer this question on employment. This included 272 autistic people and 299 family members or carers of autistic people. The factors that respondents felt were causing or leading to the problems experienced by autistic people with employment were coded into 15 categories. These categories fall under the following seven broad areas:
- A lack of understanding and awareness about autism, leading to bullying and discrimination
- Training and education about autism (including associated strengths and needs) is needed in the workplace to reduce discrimination and improve acceptance
- Support at work and flexible working arrangements
- Incentives for employers to hire autistic people
- Incorporate autistic perspectives at work and allocate them to roles best suited to their strengths
- Suitable workplace and accommodation
- Limited job opportunities.
Table 23 ranks the 13 most commonly reported factors that respondents felt were causing the problems that autistic people experience in relation to employment reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.
Importantly, these data show that:
More than half of respondents stated that the problems were due to a lack of understanding about autism and strengths and needs associated with it in the workplace.
1 in 3 respondents reported that the problems were due to a lack of training for employers about how to support their autistic employee in the workplace.
1 in 4 respondents stated that the problems were due to the culture of the workplaces not being inclusive.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 150 What we found – Employment
Table 23: 13 most frequently reported factors causing the problems experienced by autistic people in relation to employment
| Rank | Factors causing the problems experienced by autistic people in relation to employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 478$ |
Autistic people $n = 269$ |
Family member/caregiver of autistic person $n = 291$ |
Other respondent groups* $n = 238$ |
|||
| 1 | Lack of understanding, awareness or acceptance of autistic people, leading to ignorance and misinformation (e.g., there is a general lack of understanding, awareness and acceptance of autism in the community. This leads to ignorance and misinformation being perpetuated in the workplace) |
“Ignorance and stereotyping about autism. Being scared of difference, being scared of problems.” (ID 48) | 58% | 54% | 59% | 61% |
| 2 | Lack of training and education about autism in the workplace (e.g., very few employers, HR officers or other staff have any education or training about autism and how it might present in the workplace) |
“HR understanding of what autism is, inclusion education for all staff members.” (ID 233) | 32% | 21% | 36% | 36% |
| 3 | Lack of support from employers (e.g., many employers do not give adequate support or accommodations to their autistic employees) |
“Lack of accommodations in workplaces for autistic people.” (ID 151) “Lack of ongoing support and empowerment to sustain and retain people once they commence work.” (ID 959) |
31% | 36% | 32% | 33% |
| 4 | Workplaces’ ableist culture and limited willingness to change (e.g., a lot of employers are not willing to make changes to the ways they have always done things) |
“Inability to adapt to change, update knowledge and show compassion to autistic employees.” (ID 753) | 26% | 27% | 23% | 31% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 151 What we found – Employment
| Rank | Factors causing the problems experienced by autistic people in relation to employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 478$ |
Autistic people $n = 269$ |
Family member/caregiver of autistic person $n = 291$ |
Other respondent groups* $n = 238$ |
|||
| 5 | Discrimination, stigma, stereotyping, and bullying at work (e.g., autistic people are often a target of workplace discrimination or bullying) |
“Discrimination - which is hidden, not overt enough to fight.” (ID 639) “Co-workers perception of flexibility and supports as preferential treatment increasing potential for bullying.” (ID 1020) |
24% | 25% | 25% | 23% |
| 6 | Communication and interaction differences (e.g., there is a lack of understanding that autistic people may communicate or interact with people differently) |
“Being reprimanded and discouraged for communicating in more comfortable ways i.e. email rather than face-to-face, or needing to ‘smile’ to be considered friendly.” (ID 842) | 21% | 22% | 21% | 21% |
| 7 | A workplace culture dominated by deficit-based models of autism and not acknowledging the autistic employees’ strengths (e.g., most employers seem to know about the challenges that autistic people may bring to the workplace, but know nothing about their strengths) |
“Lack of knowledge about the special skills, talents, attributes, thinking, and communication styles people with autism have and can bring to a workplace.” (ID 1440) | 15% | 18% | 16% | 17% |
| 8 | Finding a job can be taxing for autistic people (e.g., very few accommodations are offered to or made for autistic people which would make the process of getting a job easier for them) |
“The people making the recruitment decisions and then managing staff don’t know anything about autism and/or don’t communicate with the autistic person to ask what they need to participate in recruitment processes or function in their role.” (ID 159) | 13% | 15% | 13% | 9% |
| 9 | A dominant capitalist culture (e.g., profits are valued more highly than people) |
“Capitalism. Yeah I know, but a system that at its core values profit ahead of societal good definitely contributes.” (ID 1075) | 9% | 9% | 9% | 11% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 152 What we found – Employment
| Rank | Factors causing the problems experienced by autistic people in relation to employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 478$ |
Autistic people $n = 269$ |
Family member/caregiver of autistic person $n = 291$ |
Other respondent groups* $n = 238$ |
|||
| 10= | Limited job opportunities for autistic people (e.g., potential employers not willing to take a chance on employing an autistic person) |
“Attitudes that we will cost money to accommodate so it’s not viable to employ us.” (ID 1410) | 8% | 7% | 8% | 8% |
| 10= | Workplace environment not accommodating for autistic people’s needs (e.g., the needs of autistic people are often not able to be met in the workplace environment) |
“Office layouts, particularly open-plan or shared offices, without individual offices, or quiet places to work. This environment, as well as having to mask / camouflage for extended periods of time, is exhausting to neurodiverse people, and actually prevents me from working effectively.” (ID 1458) | 8% | 10% | 8% | 8% |
| 10= | Limited support available to autistic people in workplace (e.g., some employers expect the autistic employee to work out what accommodations they want, rather than working with them to accommodate their needs) |
“Placing the burden on people with disabilities to actively set out reasonable adjustments that can be made.” (ID 873) | 8% | 5% | 9% | 8% |
| 10= | Lack of flexible working options (e.g., many employers do not realise that accommodating for autistic needs will increase productivity; do not allow flexible working arrangements) |
“Companies believing that flexible working arrangements will decrease productivity or needing to be open during business hours and needing employees to work then.” (ID 1051) | 8% | 9% | 9% | 8% |
Note. *all other groups that have not been identified separately
Research evidence, policy and landscape mapping to inform the National Autism Strategy 153 What we found – Employment
3.4.1.3 Factors that could prevent or reduce the problems experienced by autistic people in relation to employment
A total of 449 respondents opted to answer this question on employment. This included 253 autistic people and 274 family members or carers of autistic people. The factors that respondents identified as preventing or reducing the problems experienced by autistic people with employment were coded into nine categories. These categories fall under the following six broad areas:
- Training and education about autism (including associated strengths and needs) in the workplace to increase acceptance and reduce discrimination
- Support and incentives for employers to hire autistic people
- Improve the process of getting a job for autistic people
- Support at work and flexible working arrangements
- Incorporating autistic perspectives at work and allocating them to roles suited to their strengths
- Suitable workplace and accommodation.
Table 24 ranks the 11 most commonly reported factors that respondents indicated could prevent or reduce the problems that autistic people experience in relation to accessing employment reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.
Importantly, these data show clear predominant factors highlighted by respondents:
Almost 1 in 3 respondents stated that training and educating employers and staff about autism and related strengths and challenges could prevent or reduce the problems experienced by autistic people in relation to employment.
Almost 1 in 3 respondents stated that training and educating employers and staff about autism and related strengths and challenges could prevent or reduce the problems experienced by autistic people in relation to employment.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 154 What we found – Employment
Table 24: 11 most frequently reported factors that could prevent or reduce the problems experienced by autistic people in relation to employment
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 449$ |
Autistic people $n = 253$ |
Family member/caregiver of autistic person $n = 274$ |
Other respondent groups* $n = 217$ |
|||
| 1 | Education and training for employers and staff at workplaces (e.g., improving education and training about autism for all staff would improve understanding, awareness and acceptance of autistic employees) |
“Training for employers and people generally around what autism actually is. Social health campaigns around autism, neurodiversity and disability in general may also help.” (ID 882) | 36% | 36% | 37% | 33% |
| 2 | Accommodations, mentorship, and supports from employers (e.g., making accommodations and providing mentors and/or other required supports to autistic employees will enable them to work to the best of their ability) |
“Accommodations within the workplace to enable autistic people to work to the best of their ability.” (ID 1158) | 33% | 36% | 32% | 32% |
| 3 | Realistic representations of autism in social media, showing what employing an autistic person means (e.g., there needs to be more realistic depictions in the media of autistic people and what it is like to employ an autistic person. This would give potential employers a better understanding of what it might look like for them) |
“Increased promotion of what employing an autistic person looks like and avoid standardised perceptions - i.e., they are great at IT and prefer to work on their own because they don’t like making friends.” (ID 690) “Autistic people being showcased, promoted and presented as role models within their workplaces. Reframing of autistic people being different, not difficult.” (ID 852) |
14% | 13% | 14% | 17% |
| 4 | Improved understanding of autistic strengths (e.g., there needs to be a better understanding of the strengths that autistic people can bring to the workplace) |
“Start valuing people as people and believing that they can be contributing members of society.” (ID 1251) “Asking people about their strengths and preferences and accommodating those where possible.” (ID 440) |
13% | 13% | 12% | 15% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 155 What we found – Employment
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 449$ |
Autistic people $n = 253$ |
Family member/caregiver of autistic person $n = 274$ |
Other respondent groups* $n = 217$ |
|||
| 5= | Training and accommodations for autistic people applying for a job (e.g., potential employers need to make adjustments to the process of employing people, so it will be more inclusive) |
“Relook at how we value workers in a society, what is required in a job interview and what is unnecessary. (e.g. If you have typed up a resume and are applying online, you don’t need to input your resume into specific boxes, and then upload your resume and a cover letter that doesn’t get read. That is so difficult for a neurodivergent person to complete! So many steps.” (ID 935) | 11% | 11% | 10% | 11% |
| 5= | Increased financial support/ incentives for employers, government funding (e.g., the government should give financial support to employers to employ more autistic people) |
“Financial incentives for private businesses to hire and retain autistic people e.g., no payroll tax on autistic employees, along with financial penalties for discriminating against disabled employees which are strong enough to deter and easy to enforce so that they are actually effective.” (ID 195) “To help influence societal change enforce quota systems in all government departments to employ people with autism. Allow government to act instead of just talk. Actively advertise and communicate the benefits of employing people with autism and celebrate the unique skills, talents and qualities they bring to a workplace. We’re not all good just at IT stuff!” (ID 1436) |
11% | 8% | 11% | 13% |
| 5= | Improve understanding, awareness and acceptance of autism in the workplace (e.g., employers and other staff should have a better understanding and awareness of autism and be more accepting of autistic differences) |
“Acceptance of different work styles and preferences, including for sensory regulation.” (ID 187) “Increased employer knowledge and understanding of how autism could effect an individual in the workplace and how best to support them with succeeding.” (ID 372) |
11% | 13% | 8% | 9% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 156 What we found – Employment
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 449$ |
Autistic people $n = 253$ |
Family member/caregiver of autistic person $n = 274$ |
Other respondent groups* $n = 217$ |
|||
| 5= | Boost inclusivity culture at workplace (e.g., there needs to be more willingness to change and improve attitudes towards including more diverse people) |
“A top-down culture change that is precipitated by open communication about differences. Changes to policies and procedures affected by the employee lifecycle. Opening up a channel for employees with neurodiversity (or disability in general) where there is forum for constant communication to senior levels of management Awareness training for all would be- or already are- managers, regardless of whether their employees have disclosed disability.” (ID 1415) | 11% | 11% | 13% | 14% |
| 9= | Improve discrimination, stigma, stereotyping and bullying in the workplace (e.g., there should be a willingness to make changes to workplace procedures and policies to protect autistic people) |
“Improve stigma around autism by education (sic) the public. Supports in the workplace available to all” (ID 1411) “More stringent policies that businesses must comply to for Neurodiverse people Easier way to report any instances of bias and other negative issues Rewarding businesses for being neurodiverse friendly. Not superficially ND [neurodiverse] friendly.” (ID 417) |
8% | 5% | 9% | 6% |
| 9= | Develop job readiness programs for autistic people (e.g., autistic people may benefit from help to prepare for work from organisations and people such as Disability Employment Services, support workers and other programs) |
“Having more readily available access to workplace training that can be geared to a variety of workplace types and sizes.” (ID 330) | 8% | 10% | 7% | 8% |
| 9= | Listen to the thoughts and ideas that autistic people have (e.g., autistic people often know what they want or need, so ask them to share that information) |
“Fund autistic led organisations to help autistic workers develop self-advocacy skills.” (ID 343) “Include input from autistic staff in designing position descriptions.” (ID 532) |
8% | 8% | 8% | 10% |
Note. *all other groups that have not been identified separately
Research evidence, policy and landscape mapping to inform the National Autism Strategy 157 What we found – Employment
Note. *all other groups that have not been identified separately
Research evidence, policy and landscape mapping to inform the National Autism Strategy 158 What we found – Employment
3.4.1.4 Factors that are working well, or have worked well, for autistic people in relation to employment
Overall, 381 respondents replied to this question. This included 226 autistic people and 229 family members or carers of autistic people. From these responses, the factors that, when available, are reported to be working well, or have worked well, for autistic people in relation to employment were coded into 12 categories, which fall under the following broad areas:
- When flexible workplace accommodations and support are available to autistic employees
- When workplaces are inclusive, and the employers and staff are aware and trained about autism
- When the job matches the autistic person’s interests and strengths
- “Do not know” or nothing is/has worked well
- When there is an autism-friendly employment process available, they are self-employed, or work in small businesses
- When autistic employees are supported at work.
Table 25 ranks the 12 most commonly reported factors that respondents indicated to be working well, or have worked well, for autistic people in relation to employment. The data are ranked from most frequently reported to least frequently reported factors that are working well across all respondents. The right-hand columns report what proportion of specific respondent groups reported this as a factor that is, or has, worked well.
Importantly, these data show that approximately:
1 in 4 respondents expressed that when there are flexible workplaces available, employment works well for autistic people.
1 in 4 respondents stated that when the workplace culture is inclusive, employment works well for autistic people.
1 in 4 respondents stated that when the workplace accommodates their sensory needs, employment works well for autistic people.
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Table 25: 12 most frequently reported factors that are working well, or have worked well, in relation to autistic people accessing employment
| Rank | What is working well, or has worked well, in relation to autistic people accessing employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 56$ |
Autistic people $n = 34$ |
Family member/caregiver of autistic person $n = 42$ |
Other respondent groups* $n = 56$ |
|||
| 1 | Flexible workplace arrangements (e.g., autistic people work best when they feel supported and their workplace needs are being met; flexibility contributes significantly to that) |
“Giving reasonable accommodations to the work environment to make it more accessible.” (ID 51) | 24% | 32% | 24% | 20% |
| 2 | Supportive employers who promote inclusivity (e.g., inclusive employers support autistic employees to work the way that suits them best) |
“My first two bosses gave me lots of space to grow my own interests and they also allowed me extra time. They celebrated when I was right and also when I was wrong. I had two great bosses.” (ID 185) | 23% | 24% | 22% | 24% |
| 3 | Accommodations at work supporting autistic peoples’ sensory needs (e.g., when autistic sensory needs are met, autistic people feel valued and can work well) |
“Sensory needs met whether it’s regular movement breaks, lighting dimmed, work from home so noise and other sensory needs are met.” (ID 75) | 22% | 25% | 21% | 20% |
| 4 | Colleagues who embrace inclusivity and neurodiversity (e.g., when other staff are accepting of neurodiversity, it is easier to feel comfortable at work) |
“People who are understanding and accommodating of differences even if they do not experience those challenges themselves.” (ID 422) | 17% | 20% | 17% | 18% |
| 5 | Employment that matches autistic people’s interests or strengths (e.g., autistic people work exceptionally well when their work tasks match their strengths) |
“If you manage to get a job and it is a role that suits your strengths you do an amazing job.” (ID 88) | 12% | 10% | 13% | 9% |
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| Rank | What is working well, or has worked well, in relation to autistic people accessing employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 56$ |
Autistic people $n = 34$ |
Family member/caregiver of autistic person $n = 42$ |
Other respondent groups* $n = 56$ |
|||
| 6 | Nothing has worked or I do not know (e.g., for some people, nothing they have tried seems to have worked, or they do not know what is likely to work for them) |
“Nothing has worked well. ASD [autism] is taken advantage of, their technical ability, paid less for working harder, paid less than anyone else, male or female. Taken advantage of their deep and often knowledge especially their special interests.” (ID 469) “I have no idea. I’ve not managed to keep one job for longer than a few years.” (ID 436) |
11% | 12% | 11% | 9% |
| 7 | Educating employers and staff about autism (e.g., having education sessions about autism and neurodiversity can help staff to be more accepting and understanding) |
“Workplace education campaigns focused on neurodivergent conditions (I lead this recently at my workplace with great success).” (ID 246) | 7% | 5% | 8% | 5% |
| 8 | Workplace routines, consistency, and clear instructions (e.g., having regular routines and clear instructions helps autistic people to be competent and confident at work) |
“Explicit workplace feedback, with constructive information to help them know how to improve.” (ID 1079) | 6% | 4% | 6% | 8% |
| 9= | Supportive and autism-friendly recruitment process (e.g., changing the recruitment process to make it more inclusive can help autistic people to gain employment) |
“A great example is Reframing Autism’s options when interviewing for a job. For example, do you want to answer questions in writing, in a recording or in a telephone interview? This is a really good practice, I think” (ID 479) | 5% | 4% | 4% | 5% |
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| Rank | What is working well, or has worked well, in relation to autistic people accessing employment and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 56$ |
Autistic people $n = 34$ |
Family member/caregiver of autistic person $n = 42$ |
Other respondent groups* $n = 56$ |
|||
| 9= | Supported employment programs (e.g., supported employment can be a meaningful alternative for those who may find employment on the open market to be unsuitable) |
“Supported employment is a viable option for some autistic people like my son - his provider [name of a service provider] in WA is amazing - they support his mental health challenges every day and expand his work capacity. Lots of disability advocates criticise supported employment but it does have a place for some people.” (ID 859) | 5% | 3% | 7% | 6% |
| 9= | Autism-specific employment or internship opportunities (e.g., positions that are created specifically for autistic people give them opportunities to learn and show employers their skills and strengths) |
“Specialist internships for autistic people (a long work trial where they get paid, but are also learning).” (ID 190) | 5% | 5% | 5% | 5% |
| 9= | Being self-employed or work in a family business (e.g., self-employment or family businesses give autistic people opportunities to utilise their strengths in a workplace of their own, or with people who know them well, who will support them to succeed.) |
“Supporting entrepreneurship and self-employment for autistic people. I was self-employed for much of my career so I could design my working schedule to suit.” (ID 190) | 5% | 7% | 4% | 6% |
Note. *all other groups that have not been identified separately
Research evidence, policy and landscape mapping to inform the National Autism Strategy 162 What we found – Employment
3.4.2 Umbrella review
An umbrella review is a form of research that brings together the findings of all existing reviews (systematic and scoping) that report on a specific topic. This umbrella review aimed to identify the systematic reviews relating to any aspect of employment for autistic individuals. This included all situations related to an autistic individual being a (potential) employee, including gaining employment, maintaining employment, and employment-related skills. The terms used for the searches and the number of articles identified, screened, and included are provided in Appendix G-2 and Appendix G-3. The final umbrella review consisted of 32 articles, eight of which were written by Australian authors. More than two thirds ($k = 23$) of the reviews were written in the last 5 years. The 32 reviews collectively report on 865 individual studies related to employment and autistic individuals.
The information and findings from the included reviews are summarised in the subsections below. When reporting on the number of people or participants in the review, this will be represented as $n =$ [number of participants]. When reporting on the number of reviews that considered a topic, this will be represented as $k = [number of reviews]$.
3.4.2.1 Participants within included reviews
In total, the reviews that reported total sample sizes included 205,864 participants, with sample size for individual studies ranging from 1 to 49,623. Only six of the 32 reviews reported the overall sample size mean, standard deviation, or median of their included studies. Of the total reported participants, 201,217 (97.74%) were reported to be, or presumed to be, autistic.
Only 16 systematic reviews provided information on the gender of autistic participants. The majority of the autistic participants in these 16 reviews were male (average percentage = 78.26%). Autistic participants, or the case studies reported, ranged in age from four to 70 years.
3.4.2.2 Quality of included reviews
The quality of the included systematic reviews was assessed using the JBI Critical Appraisal Tool for Systematic Reviews. This tool assesses the methodological quality of a systematic review. The maximum score is 33, which indicates a very high-quality systematic review. The average quality score for the 32 included systematic reviews was 27.41 (83.05%), with the quality score ranging from 17 to 32.
3.4.2.3 Topics of included reviews
The 32 reviews identified in the area of employment covered six topics. These were interventions to support employment or employment-related skills ($k = 20$), predictors of employment for autistic people ($k = 5$), experiences of employment from the perspective of autistic people ($k = 3$), benefits of autistic employment ($k = 2$), barriers and facilitators to employment for autistic people ($k = 1$), and international policy related to employment of autistic people ($k = 1$). The key findings for each topic are presented in Table 26.
3.4.2.4 Research gaps
After reading the 32 reviews, the research team identified a number of key research gaps. These
Research evidence, policy and landscape mapping to inform the National Autism Strategy 163 What we found – Employment
are combined, with relevant research gaps noted within the reviews, and summarised into Table 26. While there were several reviews of interventions and supports for autistic people to gain employment or improve employment-related skills, there are still several gaps in this research area, such as a lack of understanding about what autistic people consider meaningful employment- related outcomes, and a need for higher quality research to evaluate interventions and programs, including their effect on long-term employment outcomes.
A range of factors were identified as predictors of employment in the research literature. These included higher IQ, family supportiveness, level of education, and the presence of workplace supports. Further research is required to develop and evaluate strategies to address the negative employment predictors, such as the presence of co-occurring conditions or being part of a racial or ethnic minority.
There also appears to be a need for greater research around workplace experiences, accommodations, and the impacts of the work environment on employment outcomes for autistic people. The research identified that non-disclosure of an autism diagnosis is a large barrier to accessing accommodations. The identification of strategies to support safe-disclosure is needed. There also appears to be a need to understand the differences between autistic employees’ and their employers’ perspectives on workplace supportiveness, as this appears to differ between the two perspectives.
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Table 26: Umbrella review findings for employment
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Interventions for employment or employment-related skills | $k = 20$ (Anderson et al., 2017) (Barbaro & Sharardass, 2022) (Bross et al., 2021) (Carnett et al., 2022) (Chen & Yakubova, 2021) (Davis et al., 2019) (Fong et al., 2021) (Kim et al., 2022) (Le et al., 2021) (Lorenc et al., 2018) (Lounds Taylor et al., 2012) (Mak & Zhao, 2020) (Munandar et al., 2020) (Ogawa et al., 2021) (Schall et al., 2020) (Seaman & Cannella-Malone, 2016) (Walsh et al., 2017) (Weld-Blundell et al., 2021)* (Westbrook et al., 2015) |
Relating to sheltered employment: - Evidence does not support sheltered employment as a recommended strategy to support competitive employment - Some evidence suggests that sheltered employment results in worse outcomes compared to pre-employment Technology-based supports - Virtual reality was used for interview training and to learn job-specific task skills - Video modelling was frequently used to improve both interviewing and job-specific task skills Vocational training programs: - Project SEARCH with ASD improved employment outcomes (including open employment) compared to control (high school special education services); some studies reported this program as the most evidence-based support Social skills training programs - Some programs reviewed included PEERS, and other non-manualised social skills training programs |
- Future studies should be of a higher methodological quality - Future higher level of evidence studies are required (e.g. RCTs) - Studies should include larger sample sizes, and longer follow-up periods - Studies should be conducted in more naturalistic settings, and evaluate the generalisability of employment - Future evaluation of supports for employment for autistic people should be conducted with more diverse samples (including age, gender, ethnicity, presence of co-occurring conditions) - Meaningful outcomes of employment interventions should be explored and understood from the perspective of autistic people and their families - Supports should aim to target skills relevant to desired employment types - Further research is required to continue to explore the benefit of technology-based interventions, psychosocial interventions, peer supports, advocacy programs, programs to support family members, and allied health (e.g., occupational therapy) - Further research is required to continue to explore supports targeting language and communication, interviewing, increasing independence in the workplace, accessing ‘customised employment’, and developing ‘soft’ skills |
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| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Predictors of employment | $k = 5$ (Eilenbeg et al., 2019) (Holwerda et al., 2012) (Pillay & Brownlow, 2017) (Schwartzman & Corbett, 2022) (Scott et al., 2019) |
Predictors of positive employment outcomes (in which positive employment includes having competitive employment or higher hours) - Higher IQ - Higher language abilities - Level of education - Family supportiveness - Functional independence - Higher income/socioeconomic status (family) - Workplace supports - Autism-related strengths Predictors of negative employment outcomes - More ‘severe’ autism symptoms - Co-occurring conditions - Maladaptive behaviours - Difficulties with social skills and communication - Lack of motivation - Institutionalisation - Being part of a racial or ethnic minority |
- Lack of appropriate measures for assessing employment interventions - Need to build understanding of what constitutes successful employment outcomes from the perspective of autistic people - Need to build understanding of intersectionality and impact on employment (e.g., mechanisms to understand the relationship between racial and ethnic identity and employment outcomes) - Greater need for adequate interventions and services to support autistic people in employment - Need for higher quality studies on predictors of work participation (e.g., longitudinal studies) that consider the person-environment fit |
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| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Experiences of employment | $k = 3$ (DePape & Lindsay, 2016) (Hayward et al., 2018)* (Lindsay et al., 2021) |
- High levels of unemployment or underemployment were identified for autistic people - Employment could be matched to a person’s interests and skills, and work provides meaning to autistic employees - Rates of disability disclosure in autistic employees ranged between 25% and 69% - Reasons for non-disclosure include fear of judgement, stigma, and discrimination - Benefits of disclosure included greater acceptance in the workplace, access to accommodations, greater awareness of autism in the workplace, and possible friendship development - When disclosing their autism diagnosis, many employees did not discuss their strengths and strategies to overcome challenges - Workplace context and culture was a significant factor affecting disclosure, alongside the person’s individual attributes and the level of understanding and knowledge of their co-workers - While a significant number of autistic employees were receiving workplace accommodations, a significant number were not receiving any, or they wanted to receive more autism-specific accommodations; this may be impacted by disclosure rates - Accommodations included: - Adjustments to the job application and interview process - Changes to job requirements to increase consistency and predictability - Environmental modifications - Flexibility to work from home or adjust their work environment - On-the-job training for core employment skills such as communication - The quality and benefit of accommodations may be perceived more favourably by the employer than the autistic employee - Employers also acknowledged the need for and value of training and support from external disability employment agencies for managers and staff |
- Employment support programs should focus on supporting autistic employees and employers to understand social differences as this appears to be one of the most significant areas that many individuals struggle with in the work environment - Future research should identify ways to facilitate the transition from high school to post-secondary education and/or employment, with translation to policy - Further and more rigorous research is required to understand the different experiences, including disclosure and requesting accommodations at work, for sub-groups of autistic people, including exploring differences between genders, cultures, and ages - Further investigation is required to explore the experiences of autistic individuals who have been in the workforce for long periods of time - Greater understanding of the process of disability disclosure and how accommodations are requested and received, and the impact of social and workplace policies, is required - Further research is needed to explore the application of inclusive workplace environments as a workplace accommodation, to shift the focus to modifying the environment rather than requiring the autistic employee to change |
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| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Benefits of employment | $k = 2$ (Bury et al., 2020) (Jacob et al., 2015) |
- Employment of autistic people provides benefits to governments in the reduction of government-paid benefits and insurance, and an increase in tax contributions - The economic cost of providing vocational rehabilitation to autistic individuals can be considered a ‘worthwhile investment’ as they have a high likelihood of becoming employed after receiving appropriate supports - Employment of autistic adults significantly reduces the lifetime cost of autism in terms of lost productivity, as well as decreasing reliance on adult care or daily activity services - Employment of autistic individuals in sheltered workshops led to higher costs in vocational rehabilitation compared to those employed directly in supported employment - Autistic employees have been shown to maintain consistent hours worked for a significant period of time, and show an interest and motivation to work, making them valuable for employers who are seeking reliable employees - Autistic employees can bring strengths and values to the workplace, including: - Attention to detail - Sensory strengths (vision, taste, hearing, etc.) - Tolerance for repetitive tasks - Special interests - Adherence to rules and protocols |
- Further research to identify incentives for employers is required, as overall societal cost benefit is unlikely to be sufficient - Further research is required to explore costs, benefits, and cost-benefit ratios of employing autistic individuals, particularly from the perspective of employers - Ecologically valid research is required to gain a deeper understanding of restricted and repetitive behaviours and interests, and the mechanisms that underpin the potential advantage autistic employees may bring to the workplace - More ecologically valid research is required to gain a more accurate and individualised understanding of the strengths and support needs of autistic employees |
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| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Barriers and facilitators to employment | $k = 1$ (Khalifa et al., 2019) |
Described impact of environmental facilitators and barriers to employment outcomes as including: Products and technology - Technology-based interventions and supports, such as video modelling, video-based prompting, covert audio coaching were beneficial - Low-tech interventions, such as visual prompts and schedules and communication devices, were beneficial Support and relationships - Supports offered by employers to employees including on-the-job training, explanation about workplace culture, and direct communication styles were beneficial - Supports offered by external job coaches/supports to employees, including for the job application process, training for specific skills (e.g., communication and interpersonal skills), were beneficial - Supports from external disability service providers for employers, including building capacity of employers and co-workers to understand and support the needs of an autistic employee, were valued Attitudes - The attitudes of colleagues and employers were highly influential on the success of autistic employees; supervisors of autistic staff should be respectful, patient, and understanding. Services, systems, and policies - Specific employment support programs were found to be beneficial, and included supports for job seeking, job site training, and long-term supports |
- More research is required in the area of workplace accommodations - Need to explore the implementation of more workplace accommodation services - Need to establish a standard process for assessing abilities and accommodations for autistic people in the workplace |
| Policy related to employment | $k = 1$ (Bunt et al., 2020) |
- Disability employment quotas were found in Germany, France, The Netherlands, the UK, Poland, Slovakia, and Romania; some countries appeared to not be enforcing these quotas, and some had replaced them with anti-discrimination laws - The same countries also had anti-discrimination laws - None of the quotas or anti-discrimination laws in any country were specific to autism |
- There is a need to understand the employment rate of autistic people across different countries - Further research should focus on additional strategies to increase the employment rate of autistic people, such as employment programs and educating existing employees how to work with autistic people |
* Denotes review led by Australian author.
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3.4.3 Policy and guideline review
A search of publicly available domains, including government websites, search engines, and policy databases, was conducted using various combinations of the following keywords: “employment”, “workforce”, “autis/m/tic”, and “policy”. The search yielded research outputs, valuable initiatives supporting autism employment, and relevant submissions to the Select Committee on Autism inquiry. However, no government or organisational policies providing guidelines or recommendations for the employment of autistic adults were found via these search methods. Therefore, two additional search methods were utilised: (a) broadening the search terms to include “disabilit/ies”, and (b) target searching of relevant national and state government departments.
Inclusion criteria for policies or guidelines were limited to those that were current or those that had not yet been superseded. Across all states and territories, the employment of people with disabilities remains a strategic priority in disability action plans. However, no state-level policy provides specific guidance related to autism, so Table 27 summarises comments on disability more broadly. It should be noted that some documents explicitly state that they are informed by the relevant state/territory Disability Services Acts; these are not referenced in this review.
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Table 27: Policy and guideline review findings for employment
| Organisational level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National (Federal) | Australian Government | Australian Government Response to the Select Committee on Autism (report): Services, support and life outcomes for autistic Australians | 2022 | ✓ | ✓ | - For a National Autism Employment Frame to be developed to promote benefits of employment, increase employment in public and non-public sectors, and support self-employment options - Align Employ My Ability, the Disability Employment Support Model and autism-specific recommendations. |
| National (Federal) | Australian Government | Australia’s Disability Strategy (2021-2031) Plus embedded Employ My Ability Disability Employment Strategy |
2021 | × | ✓ | - An overall outcome for people with disability to have economic security, enabling them to plan for the future and exercise choice and control over their lives - Prioritises increased employment rates - Prioritises transition pathways from education to employment - Outlines benefits to employers and provides employer tools and abilities to confidently hire, support, develop, and retain more people with disability - Facilitates organisations to engage with their own disability action/employment plan. |
| State (WA) | State Government | A Western Australia for Everyone; State Disability Strategy (2020-2030) | 2020 | × | ✓ | - Increased representation of people with disability employed in the public sector (e.g. Public Sector Commission – Workforce Diversification and Inclusion Strategy for WA Public Sector Employment 2020–2025) - Welcomes workplace cultures, opportunities for advancement, recognition as valued contributors and leaders - Equal employment requires revised recruitment processes, employment service providers, and appropriate supports to enable success. |
| State (SA) | State Government | Inclusive SA; State Disability Plan (2019-2023) | 2019 | × | ✓ | - Promotes inclusive places of study that provide pathways to meaningful and inclusive employment and volunteering opportunities - Prioritises better supports within the workplace - Focus of public sector increasing opportunities under Section 65 of the Public Sector Act 2009 (SA) - Data to measure percentage of people with disability employed and retained in public sector workplaces. |
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| Organisational level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State (NT) | Territory Government | Northern Territory Disability Strategy (2022-2032) Northern Territory Disability Strategy Action Plan (2022-2025) |
2022 | × | ✓ | - Employment to allow participation in the economy and to be financially secure - Support for employers to be disability confident - Expand options for young people transitioning from school to employment - Implement the Disability Employment program - Support non-government agencies to develop and implement their own disability action plans - Specific reference to the NTPS EmployAbility Strategy 2018-2022. |
| State (VIC) | State Government | Inclusive Victoria State Disability Plan (2022-2026) | 2022 | ✓ | ✓ | - Prioritises employment and economic participation - Specific reference to some government-funded initiations such as Impact21 (Fostering skill development, transition to work and job coaches for Adults with Down Syndrome and Intellectual Disability) and Microenterprise (supporting small business success for people with disability as entrepreneurs) - Implement round tables with social enterprise sector representatives to identify resource and capability needs for implementing the Social Enterprise Strategy 2021–2025 and other opportunities including social procurement - Reference to Amaze’s autism awareness campaign. |
| State (VIC) | State Government | Victorian Autism Plan (2019) | 2019 | ✓ | ✓ | - Opportunity is about having the means to control and improve your circumstances through access to education, employment, and positions of leadership and influence - For individuals to generate income through employment, business ownership, and entrepreneurship and participate freely as consumers - Increase employment of autistic Victorians - Specific reference to Every opportunity: Victorian economic participation plan for people with disability 2017-2020, Jobs Victoria Innovation Fund, Dandelion Program, RISE employment initiative to enhance employment opportunities and job-matching of autistic people. |
| State (TAS) | State Government | Accessible Island Tasmania’s Disability Framework for Action (2018-2021) | 2018 | × | ✓ | - To lead by example with state government goals for employment opportunities, support for employers via the Tasmanian State Service Diversity and Inclusion Policy and Framework 2017–2020. |
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| Organisational level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State (QLD) | State Government | All Abilities Queensland: Opportunities for All State Disability Plan (2017-2020) | 2017 | × | ✓ | - Data to measure proportion of employment (with a public sector goal of 8%). |
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3.4.4 Community views, research evidence, and policy/guideline alignment and gap analysis
As well as the research gaps identified as part of the research landscape mapping, the gap analysis (see Figure 5 for process) allows comparison of the current state (predominantly based upon the community views analysis but also some findings of the umbrella review and policy review) to an improved future state (based upon community views around what is working well, policy review, and some umbrella review findings).
Figure 5: Gap analysis: Current to improved future state
The gap analysis work for the employment section highlighted the following elements that need to be addressed in order reduce the problems experienced by autistic people in relation to employment:
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3.4.4.1 There is a need to improve the level of autism knowledge, acceptance, and understanding of those in workplaces (including employers and employees)
Current state
The community views survey highlighted a large amount of discrimination, ignorance, misinformation, and lack of understanding, awareness, or acceptance of autism, in the workplace. This included reports of bullying and extreme pressure to mask to fit in with other (neurotypical) employees. While some of the research landscape mapping noted a desire from employers for training and information about autism, autistic employees’ negative experiences of discrimination, ignorance, and bullying in the workplace was not captured in the research found. State and federal strategies identified as part of the policy review describe providing supports to employers to improve their knowledge and skills to employ disabled people, but there is no mention of acceptance and attitudes, and this was not specifically in relation to autism.
Improved future state
The community views survey highlighted the need to provide training for employers and other staff about autism and how it might impact their autistic colleagues’ experiences at work. Particularly, respondents noted training that highlighted the autistic strengths and understood autism as a difference rather than a disability. They described the value in having staff who understand and practise inclusion, and are neurodiversity friendly. As described in the strategies identified in the policy review, further supports and training should be delivered to workplaces to ensure this accepting environment for autistic employees.
Steps that can be taken to move from current to future state include:
- Co-produce training and materials to increase employers’ and other staff’s understanding and acceptance of autism, including specific training for HR professionals who may be managing situations that escalate to disciplinary action
- Increase the awareness of employers and employees (including autistic employees) of applicable anti-discrimination legislation and employer policies
- Further research to understand the experiences of autistic employees and discrimination, ignorance, and bullying in the workplace is required
- Further evaluation and implementation of materials such as the Integrated Employment Success Tool (IEST) that provide resources and training to ensure workplaces are neurodivergent friendly
- Further education and awareness about autism in the general community, which will influence attitudes and knowledge of those in workplaces.
3.4.4.2 There is a need to improve access to suitable workplaces and accommodations for autistic people
Current state
The community views survey highlighted that many workplaces were inaccessible and unsuitable for autistic employees for a range of reasons, including workplace culture, company structure and hierarchy, and physical environments. The research landscape mapping identified many potential accommodations that could support autistic employees; however, it was noted that being able to
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access accommodations relied on the person disclosing their diagnosis. The research identified many barriers to disclosing and therefore barriers to receiving appropriate accommodations. In the policy review, most of the strategies and policies identified focussed on broader disability supports and accommodations in the workplace, with limited reference to autism. As a sometimes “invisible” disability, autistic employees may face additional barriers to disclosure and accommodations than a co-worker with a physical disability.
Improved future state
The community views survey highlighted the need for workplaces to be more accessible and suitable for neurodivergent people, and for accommodations to be provided to autistic employees where required. Providing autistic employees with options and flexibility, such as being able to modify their work environment, work remotely, receive more direct and structured feedback, and changes to job requirements to provide greater consistency, greatly facilitated their success in the workplace. The research landscape mapping also identified a range of accommodations that were beneficial to autistic employees in the included studies.
Steps that can be taken to move from current to future state include:
- Provide training and resources to employers about creating a neurodivergent-accessible workplace (e.g., the IEST)
- Conduct further research to identify useful strategies and accommodations for autistic individuals in the workplace. These can then be shared with employers and autistic employees for whom they may be beneficial.
3.4.4.3 There is a need to develop appropriate and accessible employment pathways and opportunities for autistic people
Current state
The community views survey highlighted the lack of accessible and appropriate pathways into employment for autistic people, particularly as part of transition planning for young adults moving from education to employment. Without the opportunity to develop employment-related skills, autistic young people miss out on many employment opportunities. The community also noted that there are limited appropriate job opportunities available to autistic people, particularly considering the inaccessibility of many workplaces. The research landscape mapping identified that sheltered employment is not an appropriate pathway to encourage open employment for autistic people, and can even have negative impacts. Rather, having programs to develop autistic individuals’ strengths and match them with appropriate workplaces was encouraged.
Improved future state
The community views survey highlighted the need for effective and relevant employment support, such as disability employment services, and the need to match work tasks with the interests and strengths of the autistic individual. The opportunity for training and skill development relevant to employment was also described as beneficial. The research landscape mapping also supported developing skills relevant to job roles that were relevant to or of interest to autistic people, and having workplace supports was a predictor of positive employment outcomes. The policy review also identified several strategies that prioritised transition pathways to employment and the need for employment service providers.
176 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Employment
Steps that can be taken to move from current to future state include:
- Embed programs to develop employment-related skills for autistic students in high school
- Develop evidence-based pathways from education to employment for autistic young people
- Integrate tools that identify and build on autistic individuals’ strengths and interests (e.g., MyWay Employability) into transition planning and employment services
- Develop an evidence base of strategies and supports that lead to employment-related outcomes that are meaningful to autistic people and their families.
3.4.4.4 There is a need to increase the interest and openness of employers to employ autistic people
Current state
The community views survey identified that many employers were disinterested in, avoidant of, or hostile to employing autistic people. This was seen as being due to being unsure of how to work with an autistic person, a lack of understanding of the strengths of autistic people, or a view that employing autistic people would have a negative impact on business productivity. The research landscape mapping identified that employers often wanted to support autistic employees; however, they lacked the knowledge and skills on how to do so. The research also identified that employers may perceive the supports and accommodations they provide to their autistic employees as more beneficial than they actually are to the person. The policy review identified several targets for the employment of people with disabilities; however, there were no targets specific to autistic people.
Improved future state
The community views survey highlighted the benefit of having supportive management and employers who promoted inclusivity and a supportive work environment. It identified that having employers who understood autism and were open to supporting neurodiverse employees was of great benefit when seeking and maintaining employment. The research landscape mapping identified that supports for employers from disability service and advocacy organisations were a great facilitator to their knowledge and confidence to employ autistic people, and to support their autistic employees.
Steps that can be taken to move from current to future state include:
- Develop and provide education and resources to explain the benefits and strengths autistic employees can bring to a workplace
- Develop and provide education and resources to employers so they can feel comfortable and knowledgeable about supporting autistic employees
- Develop and provide resources for autistic employees and their employers to discuss their strengths and accommodation needs clearly to ensure they are effective
- Government programs and incentives to encourage the employment of autistic individuals
- Further research to identify, measure, and describe the benefits to employing autistic people for businesses and employers.
177 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Employment
3.4.4.5 There is a need to improve accessibility of the job application pathway for autistic people
Current state
The community views survey highlighted the inaccessibility of the job application process, including interviews. Interviews were described as being a significant barrier, noting that even if the person is perfectly capable of performing the job, they may not be able to “think on their feet” or connect socially with the interviewer. The research landscape mapping identified that modifications to the job application and interview processes were a common accommodation provided to autistic employees.
Improved future state
The community views survey highlighted that adaptations to recruitment processes were of significant benefit in obtaining employment. The option to participate in job trials as a method for assessing a person’s suitability for a role was also suggested, as this provided a more accurate picture than a traditional interview of how an autistic person might perform at a job. The research landscape mapping included several studies that evaluated video modelling and virtual reality to prepare autistic people for job interviews.
Steps that can be taken to move from current to future state include:
- Conduct research to identify the needs and preferences related to employment interviews for autistic people and employers
- Conduct research to identify and assess the acceptability of suitable methods, other than interviews, of assessing candidates’ suitability for job roles
- Co-design, with autistic people and employers, resources for employers to assist with modifying recruitment processes to be more neurodivergent accessible.
178 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Employment
3.5 Housing and independent living
3.5.1 The “1,000 Insights” community views survey
A total of 186 respondents answered at least one of the questions on housing. This included 105 autistic people and 122 family members or carers of autistic people. The 10 most frequently reported responses are detailed within this section. On occasions when there are multiple responses with the same frequency in the tenth position, the total number of responses reported will be greater than 10 to ensure all categories with equal frequencies in the tenth position are represented. However, the full list of response codes for each question within the housing domain is available in Appendix H-1.
The tables for each question describe the response categories (with example participant responses) in order from the most frequently reported to the least frequently reported. For each category, percentages are provided to indicate the proportion of a respondent group whose response reflected the specific category. These groups are: (a) the entire sample (i.e., everyone), (b) autistic people, (c) family members/caregivers of autistic people, and (d) all respondents who are not represented in one of these groups.
3.5.1.1 Problems experienced by autistic people in relation to housing
A total of 186 respondents opted to answer this question on housing. This included 105 autistic people and 122 family members or carers of autistic people. The problems experienced were coded into 18 categories, which fall under the following five broad areas:
- Difficulties accessing safe and affordable options for supported independent living
- Lack of access to financial support and employment to make independent living sustainable
- Limited access to accommodation that is autism-friendly
- Problems with making adjustments to shared accommodation, accommodating different sensory profiles and communication needs
- Lack of support with the renting process and its related communications.
Table 28 ranks the 11 problems that autistic people experience in relation to the housing service (based on the survey responses). The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem. Note that respondents often identified with multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the number of respondents in subgroups exceeds the total number of all respondents.
Of note is that these data show that approximately:
- 1 in 2 respondents highlight that autistic people cannot afford to live independently from their parents/carers.
- 1 in 5 respondents highlight a long wait time for accessing a rental property, especially those provided through public housing systems.
- 1 in 5 respondents highlight that autistic people need sustainable incomes to be able to live independently.
179 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Housing and independent living
Table 28: 11 most frequently reported problems experienced by autistic people in relation to housing
| Rank | Problems experienced by autistic people in relation to the housing and sample quotes from responses | Direct insight | % who stated this as a problem |||||
| — | — | — | — | — | — | — |
| | | | All respondents
$N = 186$ | Autistic people
$n = 105$ | Family member/caregiver of autistic person
$n = 122$ | Other respondent groups*
$n = 83$ |
| 1 | Access to affordable living accommodations
(e.g., low availability of public/social housing; complex housing pathway; high rental costs; inadequate government assistance for housing) | “Lack of support to get and sustain housing NDIS is not appropriately supporting or funding this.” (ID 105) | 48% | 48% | 51% | 53% |
| 2 | Timely access to public housing as currently there is a long wait list
(e.g., shortage of social/public housing results in living with family or trying to get private rentals in a competitive rental market) | “It takes a long time to get public housing and they are often dependent on family or rental market… [there is] huge shortage in current rentals and public housing, [and] waitlist is huge.” (ID 705) | 21% | 16% | 25% | 28% |
| 3 | Ability to cover the costs related to housing
(e.g., unemployment or under-employment of autistic people affects ability to afford housing within budget; high costs of living) | “Cost vs income - which may be lower due to not being able to work full time or struggling to find work. Poor work prospects leading to low incomes. Lack of access to employment opportunities reduces income and makes housing unaffordable” (ID 48) | 19% | 23% | 18% | 20% |
| 4 | Suitability of accommodation to autistic needs
(e.g., interpersonal challenges with shared housing; limited consideration for the best fit housing options for autistic people) | “Relationship difficulties in share housing situations, including conflict arising from the person’s particular sensory, privacy & communication needs. Sometimes it is better that they live alone with a pet, being able to access housing with a pet, rather than being told they cannot.” (ID 168)
“Lack of suitable options for those who can’t live in group settings or with family - need bespoke options” (ID 790) | 18% | 16% | 19% | 18% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 180 What we found – Housing and independent living
| Rank | Problems experienced by autistic people in relation to the housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 186$ |
Autistic people $n = 105$ |
Family member/caregiver of autistic person $n = 122$ |
Other respondent groups* $n = 83$ |
|||
| 5 | Ability to choose from a variety of housing options (e.g., lack of a range in living options, prejudice over group options) |
“Lack of understanding and putting those who don’t want to live in a group home no other option but to do so” (ID 409) “Lack of consideration of what an individual might require and the different types of housing needed for different groups of people on the spectrum” (ID 416) |
17% | 13% | 19% | 18% |
| 6 | Support with navigating the renting process and its related communication and interactions (e.g., rental process is complex and hard to understand; lack of support to assist autistic people with understanding rental processes including rental contracts) |
“The behaviour of real estate agents who manage rental properties. They are often the sort of people who try to take advantage, and Autistic people are often very vulnerable in that situation. The states that have clear rules about rental rights and responsibilities make this situation easier to deal with, but it’s still a huge problem. Oh! The biggest, maybe! Rental contract instability! Rents seem to go up every time the contract renews, which is usually every six months, which often means you have to move out. It’s horrendous. There is no certainty, so much fear and stress. I believe some people negotiate or some such, but that would involve dealing with shady real estate agents and reading their social cues (e.g., are they being serious or should I push here?) - a process that can be beyond the skills of many Autistic people. Getting a rental or home loan is extremely hard because of my lack of communication skills and my social anxiety. Getting bad references if you screw up when you can’t cope with work or life. Real Estates often perceive you as mentally challenged and won’t rent to you.” (ID 479) | 14% | 18% | 14% | 12% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 181 What we found – Housing and independent living
| Rank | Problems experienced by autistic people in relation to the housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 186$ |
Autistic people $n = 105$ |
Family member/caregiver of autistic person $n = 122$ |
Other respondent groups* $n = 83$ |
|||
| 7= | Feeling safe when living independently (e.g., lack of robust housing or housing that is physically and psychologically suitable for the needs of autistic people; areas where public/social housing is available may be dangerous) |
“Housing in dept housing estates can be very confronting, even dangerous to autistic people due to lots of social / drug and alcohol abuse fueling violence that gets targeted to the most vulnerable. Safe housing (by safe I mean safe to that person and their nervous system; sensory wise, accessibility wise, close to their connections etc.) is pretty much inaccessible to us.” (ID 300) | 13% | 8% | 16% | 16% |
| 7= | Receiving financial support from the NDIS (e.g., inadequate funding from NDIS to support housing needs; lack of accountability within government agencies related to housing support for autistic people) |
“Lack of accountability from State Governments to provide especially for those with severe and profound autism buck passing between state and federal governments. NDIS should not artificially limit amount of SDA [specialist disability accommodation] that can be provided. Lack of housing for supported independent living. The NDIS needs to provide accommodation for people like me in this matter. I am currently living in the private rental market in a very small duplex and paying high rent. I am concerned about this rent increasing and the cost of living. I also am concerned about social isolation and lack of both awareness and support.” (ID 775) | 13% | 11% | 13% | 13% |
| 9 | Suitability of the accommodation structure (e.g., lack of housing designed with consideration for sensory sensitivities and spatial needs of autistic people; autistic people unable to make modification to rental houses to meet their needs) |
Autistic renters are unable to alter their homes to meet Autism specific needs such as sensory needs. Small lot sizes make neighbours noisier, which I struggle to cope with and there is a lack of privacy from neighbours. Noise and other sensory-related issues” (ID 290) | 12% | 12% | 11% | 11% |
182 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Housing and independent living
| Rank | Problems experienced by autistic people in relation to the housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 186$ |
Autistic people $n = 105$ |
Family member/caregiver of autistic person $n = 122$ |
Other respondent groups* $n = 83$ |
|||
| 10= | Lack of support with the rental process and with understanding a tenant’s rights, having pets, routine inspections (e.g., lack of support to assist autistic people in understanding their rights, responsibilities, and expectations related to rentals) |
“Landlords constantly showing up cuz they don’t trust you cuz you’re different, long contracts we usually don’t get to read through until after the fact, having to be social to even get a place” (ID 202) | 11% | 15% | 9% | 7% |
| 10= | Living independently (e.g., lack of support to develop independent living skills among autistic people who desire to live alone or outside the family home) |
“Not having the life skills to live on their own. I have a son who would love to move out eventually but would struggle immensely house sharing with people he doesn’t know. He struggles to clean, cook, maintain a yard and access emergency services” (ID 594) | 11% | 6% | 12% | 13% |
Note. *all other groups that have not been identified separately
183 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Housing and independent living
3.5.1.2 Factors causing the problems experienced by autistic people in relation to housing
A total of 145 respondents opted to answer this question on housing. This included 80 autistic people and 95 family members or carers of autistic people. The factors that respondents felt were causing or leading to the problems experienced by autistic people with housing were coded into 18 categories, each falling under five broad area:
- Lack of affordable and suitable housing options
- Stigma and lack of understanding about the needs, preferences, abilities, and capacities of autistic people, at times leading discrimination
- Limited resources, funding and financial support from the government
- Lack of support and the required staff to navigate the housing systems and processes
- Lack of autistic input in amending the existing policies.
Table 29 ranks the 14 most commonly reported factors that respondents felt were causing the problems that autistic people experience in relation to housing reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.
Importantly, these data show that approximately:
- 1 in 3 respondents stated that the problems were due to insufficient affordable housing options.
- 1 in 3 respondents reported that the problems were due to a lack of understanding of autism amongst people who are involved in the housing process (e.g., housing organisations, real estate agents, renters).
- 1 in 4 respondents stated that the problems were due to limited suitable housing options.
- 1 in 5 respondents stated that the problems were due to limited housing availability that would accommodate an autistic person’s needs.
184 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Housing and independent living
Table 29: 14 most frequently reported factors causing the problems experienced by autistic people in relation to housing
| Rank | Factors causing the problems experienced by autistic people in relation to housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 145$ |
Autistic people $n = 80$ |
Family member/caregiver of autistic person $n = 95$ |
Other respondent groups* $n = 65$ |
|||
| 1 | Lack of affordable housing options (e.g., lack of available public/social housing; high costs of rentals and high costs of living) |
“The private rental market is not affordable to most people on DSP [disability support pension] and people with ASD have support needs that normally exceed what is suitable for mainstream housing options.” (ID 60) | 30% | 29% | 26% | 35% |
| 2 | Lack of understanding and awareness about autism (e.g., lack of understanding of the needs and experiences of autistic people in the public, among health workers, housing organisations and the NDIA) |
“Social workers, employers, housing organisations and real estates do not understand how ASD symptoms can present and they do not fully understand the impact this has on an Autistic individual.” (ID 616) | 29% | 28% | 18% | 10% |
| 3 | Lack of suitable housing options (e.g., lack of appropriate social housing; lack of consideration and accommodation for the needs of autistic people; difficulties with interpersonal relationships) |
“No social housing. Being autistic makes living with others very difficult.” (ID 206) “Group residential settings not giving autistic adults and young people voice and agency.” (ID 696) |
26% | 21% | 15% | 15% |
| 4 | Limited government housing (e.g., shortage of social/public housing; lack of focus on housing as a priority) |
“Lack of public housing for people at high risk.” (ID 24) “Lack of supply of building materials, lack of insight by the government to increase housing. Limited options to support people impacted by these decisions by the government, NGO’s.” (ID 705) |
23% | 21% | 18% | 12% |
185 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Housing and independent living
| Rank | Factors causing the problems experienced by autistic people in relation to housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 145$ |
Autistic people $n = 80$ |
Family member/caregiver of autistic person $n = 95$ |
Other respondent groups* $n = 65$ |
|||
| 5 | Limited resources and funding (e.g., lack of funding for disability housing; lack of appropriate and targeted government funding for autistic people) |
“Lack of funding for disability homes.” (ID 290) | 20% | 14% | 16% | 10% |
| 6 | Support from government (incl NDIS and DSP, rent assistance) (e.g., inadequate funding support for housing needs; limited planning for social housing; DSP [Disability Support Pension] and JobSeeker payment inadequate support for autistic people) |
“Lack of Government support or housing options for autistic people which results in them heavily relying on family. Lack of money to look for housing independently.” (ID 47) | 19% | 19% | 10% | 8% |
| 7 | Employment, income and work capacity issues (e.g., limited working capacity and income potential for autistic people; high unemployment or under-employment of autistic people) |
“Many autistic people have significant permanently limited work capacity but would not qualify for the Disability Support Pension due to unfair criteria. Money - holding down a job while being autistic can be hard.” (ID 81) | 15% | 21% | 9% | 6% |
| 8 | Support with systems and processes (e.g., poorly integrated government systems; long processes to access support and lack of support to navigate government systems) |
“The SDA [Specialist Disability Accommodation] process is too long and difficult to manage. It took three years for us to go through with our young person, and $11,000 in assessments. Inability to Advocate for themselves and/or their families or unable to get access to an advocate support service. I can no longer access the NDIS because the amount of work involved to gain access to the support I need has become too overwhelming for me to comprehend.” (ID 91) | 10% | 10% | 7% | 6% |
186 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Housing and independent living
| Rank | Factors causing the problems experienced by autistic people in relation to housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 145$ |
Autistic people $n = 80$ |
Family member/caregiver of autistic person $n = 95$ |
Other respondent groups* $n = 65$ |
|||
| 9 | Stigma and discrimination (e.g., lack of awareness among stakeholders about the discrimination autistic people experience; limited support available unless perceived as ‘high needs;’ real estate agents will not rent to autistic people if they perceive them as ‘mentally challenged’) |
“Shame and stigma for the person experiencing difficulties. People automatically assuming the worst about people who are different.” (ID 381) | 9% | 9% | 7% | 3% |
| 10= | Renting and its related communications are complex (e.g., lack of understanding among autistic people about the rental process, rules and social and non-verbal cues that guide negotiations when renting) |
“The rental system. It’s horrendous. Horrible for everyone, but particularly for the more vulnerable, such as Autistic people… Rents seem to go up every time the contract renews, which is usually every six months, which often means you have to move out. It’s horrendous. There is no certainty, so much fear and stress. I believe some people negotiate or some such, but that would involve dealing with shady real estate agents and reading their social cues (e.g., are they being serious or should I push here?) - a process that can be beyond the skills of many Autistic people.” (ID 479) | 7% | 11% | 5% | 3% |
| 10= | Lack of support with activities related to housing (e.g., lack of support to help autistic people with housing processes such as applying for rental or getting home loans; poor understanding among autistic people of how to run a household) |
“No supports available unless perceived to be ‘high needs’. Disability was mostly associated with physical access to housing. Autistic needs relate closer to normal housing but with some executive functioning assistance - hence ILO [NDIS Individual Living Options funding]. The environment and each autistic personality may be triggers to other autistic people” (ID 381) | 7% | 10% | 5% | 3% |
187 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Housing and independent living
| Rank | Factors causing the problems experienced by autistic people in relation to housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 145$ |
Autistic people $n = 80$ |
Family member/caregiver of autistic person $n = 95$ |
Other respondent groups* $n = 65$ |
|||
| 10= | Unknowledgeable support staff (e.g., support staff lack sufficient education; understanding of autism and ill-equipped to help advocate for autistic people) |
“Inability to Advocate for themselves and/or their families or unable to get access to an advocate support service.” (ID 1351) “Ignorant staff and not qualified.” (ID 597) |
7% | 4% | 3% | 2% |
| 10= | Government policies are a barrier (e.g., lack of government investment or interventions to improve access to public/social housing; lack of policies that support autistic people with housing access) |
“Both commonwealth and state gov not investing sufficiently in programs that could lead to more effective housing solutions.” (ID 1227) | 7% | 4% | 5% | 3% |
| 10= | There is limited understanding about the abilities and capacity of autistic people (e.g., lack of understanding among decision-makers about the needs and capacity of autistic people to guide funding allocations and policy) |
“People who make decisions have very little knowledge of the real impact a severe ASD diagnosis has on a person and family and they restrict access to services and funding that is desperately required to keep the person with ASD safe.” (ID 835) | 7% | 3% | 6% | 3% |
188 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Housing and independent living
3.5.1.3 Factors that could prevent or reduce the problems experienced by autistic people in relation to housing
A total of 142 respondents opted to answer this question on housing. This included 81 autistic people and 99 family members or carers of autistic people. The factors that respondents identified as preventing or reducing the problems experienced by autistic people with housing were coded into 18 categories. These categories fall under the following six broad areas:
- More autism-friendly housing options with physical features that accommodates varied sensory profiles
- Educating the community about the needs, preferences, abilities, and strengths of autistic people
- Improved financial support or availability of affordable government housing
- Providing support, adjustment and diversity for accommodation suitable for autistic people who pursue independent living
- Improved rental systems and communications associated with it
- Improve government housing policies by increasing clarity of the processes and reducing their complexity.
Table 30 ranks the ten most commonly reported factors that respondents reported could prevent or reduce the problems that autistic people experience in relation to accessing housing reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.
Importantly, these data show that approximately:
- 1 in 4 respondents stated that providing accommodation that is more autism-friendly could prevent or reduce the problems experienced by autistic people in relation to housing.
- 1 in every 5 respondents identified acceptance and awareness about autism as a factor that could prevent or reduce the problems experienced by autistic people in relation to housing
189 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Housing and independent living
Table 30: 10 most frequently reported factors that could prevent or reduce the problems experienced by autistic people in relation to housing
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 128$ |
Autistic people $n = 60$ |
Family member/caregiver of autistic person $n = 88$ |
Other respondent groups* $n = 77$ |
|||
| 1 | More housing options for autistic people (incl. location, rent/own/build, structure, singles/families, supported accommodation) (e.g., provide more public/social housing; more supported accommodations specific to the needs of autistic people) |
“Having more housing, options for people mid-level support needs under NDIS. Actually asking autistic people what will work for them and building services based on needs.” (ID 105) | 25% | 21% | 17% | 25% |
| 2 | Education to increase acceptance and understanding about autism (e.g., provide autism training for housing staff, architects, families, people in the education system about the sensory and spatial needs of autistic people) |
“It starts with reforming the school system. With reforming and reframing societies perception of Autistic people. Make schools & employers more autism-friendly.” (ID 1131) | 22% | 20% | 22% | 21% |
| 3 | More flexible financial support opportunities (e.g., NDIS provide flexibility in guidelines and funding for home modifications; flexibility in funding different housing options) |
“Funding support to cover costs of making accommodation accessible in different ways to encourage a patchwork of accessibility. Better access to NDIS support for independent living.” (ID 77) | 19% | 19% | 19% | 21% |
190 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Housing and independent living
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 128$ |
Autistic people $n = 60$ |
Family member/caregiver of autistic person $n = 88$ |
Other respondent groups* $n = 77$ |
|||
| 4 | Access to autism-specific support (e.g., make schools and employers more autism-friendly; increase housing support; mandate housing as a human right) |
“More autistic training for Housing staff along with more specialised supports, options and assistance available for autistic clients. Housing linking and partnering with more autistic based specialised supports. Supports to assist with securing and sustaining private housing. Financial ‘translators’ that autistic people can access for large life changing commitments and decisions. Contracts/rental agreements to be in plain language and having a support person to explain.” (ID 446) | 18% | 19% | 14% | 16% |
| 5 | More affordable and appropriate public housing (e.g., increase social housing; stricter regulations on pricing for community housing providers; more rules and regulations regarding the maintenance of rental properties) |
“Need a lot more investment in affordable housing. Cheaper and safer housing options for people at the edges of society.” (ID 935) | 17% | 15% | 19% | 16% |
| 6 | More housing options for autistic people (incl. for singles/ families/ shared, supported accommodation) (e.g. increase funding for single occupancy arrangements; improve selection processes for shared housing to reduce interpersonal conflicts; provide more need/preference-based housing options) |
“More individual supports and services for those who wish to live alone. More individual flats or villas for individual accommodation. More options of smaller one bedroom houses. Develop concepts of ILO [NDIS Individualised Living Options] much more with perhaps some innovative arrangements” (ID 553) | 14% | 14% | 15% | 16% |
191 Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found – Housing and independent living
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 128$ |
Autistic people $n = 60$ |
Family member/caregiver of autistic person $n = 88$ |
Other respondent groups* $n = 77$ |
|||
| 7 | More accessible financial assistance (e.g., better pensions to account for cost of living and housing expenses; provide rent assistance; flexibility in requirements for Disability Support Pension) |
“Loosen the restrictive requirements for the disability support pension so autistic people can access appropriate financial assistance. Many people do not get funding or the Disability Support Pension, even though they have autism because they are considered ‘too high functioning’, despite the fact that they may have extreme difficulty getting and keeping a job. Make DSP more accessible for autistic people” (ID 81) | 13% | 9% | 7% | 12% |
| 8= | More autism-specific and autism-friendly accommodation (e.g., recognise unsuitable housing; increase autism specific housing; provide specialised trained staff for supported living) |
“Create housing and supported living opportunities for neurodivergent people who do not require carers but do require consultative mentorship. We need Autism specific disability homes staffed by specially trained staff. Accommodation specifically for adults on the autism spectrum with privacy issues and other areas being addressed.” (ID 247) | 11% | 14% | 9% | 9% |
| 8= | Improved and manageable renting system (e.g., improve government policies and regulations that cap the prices of rentals; regulations that allow autistic people to make some modifications to rental properties) |
“The rental market needs regulations which allow Autistic renters to make subsidised changes to their homes (e.g., in types of heating/cooling and paint colours). The government needs to put renters first. Capping rent so it can’t go up every six months, making it harder for landlords to send their minions (i.e. the real estate agents) out to harass their tenants.” (ID 290) | 11% | 9% | 12% | 9% |
| 8= | Improved access to public housing, reducing wait times (e.g., increase funding of social housing; provide more homelessness support; have special listings for autistic people) |
“Reduce the waiting lists for public housing. A special listing for people with autism.” (ID 528) | 11% | 12% | 10% | 12% |
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3.5.1.4 Factors that are working well, or have worked well, for autistic people in relation to housing
Only 76 respondents replied to this question. This included 43 autistic people and 54 family members or carers of autistic people. From these responses, the factors that are reported to be working well, or have worked well, for autistic people in relation to housing were coded into 11 categories and fall under the following broad areas:
- No good options, don’t know, and needs work
- When there is access to financial/governmental support (e.g., NDIS) based on individual needs
- When autistic people live with their family/carers or other neurodivergent people
- When there are support networks that can help autistic people navigate the housing process and independent living activities
- When there is autism-specific housing available.
Table 31 ranks the 11 most commonly reported factors that respondents reported to be working well, or have worked well, for autistic people in relation to housing. The data are ranked from most frequently reported to least frequently reported factors that are working well across all respondents. The right-hand columns report what proportion of specific respondent groups reported this as a factor that is working well or has worked well.
Importantly, these data show that:
- 1 in 3 respondents did not feel that anything is working well for autistic people in relation to housing.
- Almost 1 in 5 respondents stated that when there is NDIS support, housing works well for autistic people
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Table 31: 11 most frequently reported factors that are working well, or have worked well, for autistic people in relation to housing
| Rank | What is working well, or has worked well, in relation to autistic people accessing housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 56$ |
Autistic people $n = 34$ |
Family member/caregiver of autistic person $n = 42$ |
Other respondent groups* $n = 56$ |
|||
| 1 | Nothing is working well/has worked well (e.g., unable to identify any aspect of housing that is working well; feeling unsupported when trying to meet housing needs) |
“Nothing atm as we won’t let our foster son move into the areas that are offered for his own safety. It’s all on me. No (suitable) help (yet). Nothing much. Families have to constantly fight for services to be done competently and are always raising concerns of neglect from staff not following care plans.” (ID 504) | 33% | 30% | 31% | 33% |
| 2 | When there is NDIS support (e.g., NDIS support for those who qualify for supported independent living; NDIS housing support services) |
“NDIS providing supports for daily living activities.” (ID 1499) | 22% | 21% | 15% | 15% |
| 3= | When autistic people live with their family/carer (e.g., living with family; having family that make accommodations for sensory and spatial needs) |
“Most autistic adults I know have struggled with housing and still live with their parents. Living with families or siblings. The ability to stay at home with family for longer has benefited some with ASD.” (ID 1091) | 11% | 2% | 13% | 13% |
| 3= | When autistic people are supported with independent living (e.g., able to live alone with support; low density social housing options that allows for more independence) |
“Supported independent living is great. Having support to help look after house.” (ID 195) | 11% | 12% | 9% | 13% |
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| Rank | What is working well, or has worked well, in relation to autistic people accessing housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 56$ |
Autistic people $n = 34$ |
Family member/caregiver of autistic person $n = 42$ |
Other respondent groups* $n = 56$ |
|||
| 3= | When there are existing support networks (including family) (e.g., having supportive family that can assist financially or with navigating housing processes; having compatible housemates who support each other) |
“People such as parents joining together to purchase properties for their children. With strong support from my husband who has ADHD but not autistic, we were able to buy our first home together - his mother also supported us to make our first deposit to crack into the housing market. Without that, we wouldn’t be home owners now.” (ID 1251) | 11% | 7% | 33% | 0% |
| 6 | When the system is based on individual needs (e.g., funding that is provided based on specific needs; self-advocacy important to access tailored housing support; housing that is suitable based on individual needs and preferences) |
“Flexible funding for flexible needs. We moved to a farm to support our daughter so that we could afford a big enough house that she could have her own bathroom and decent sized room to retreat. The housing solution has made a big difference but it has imposed a long commute to town for our family.” (ID 1199) | 9% | 7% | 4% | 5% |
| 7= | When autistic people live with other neurodivergent people (e.g., better compatibility when living with other neurodivergent people; mutual understanding and more respect) |
“Living with other neurodivergent people. Housing with others whom they are compatible with not just all disability (not segregating).” (ID 1227) | 8% | 9% | 6% | 10% |
| 7= | When there is financial support for housing and independent living (e.g., availability of financial assistance such as rent assistance but increased funding for housing is needed) |
“RENT ASSISTANCE IS GOOD BUT NOT ENOUGH.” (ID 1199) | 8% | 9% | 7% | 3% |
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| Rank | What is working well, or has worked well, in relation to autistic people accessing housing and sample quotes from responses | Direct insight | % who stated this as a problem | |||
|---|---|---|---|---|---|---|
| All respondents $N = 56$ |
Autistic people $n = 34$ |
Family member/caregiver of autistic person $n = 42$ |
Other respondent groups* $n = 56$ |
|||
| 9= | When there is a choice for varied types of accommodation that are safe (e.g., having a choice in housing option; housing options that are safe from violence and interpersonal conflict) |
“I like being independent and living on my own without random people showing up unannounced so being in my own peace is definitely a plus. Low density social housing options that allow for independence, tenancy sustainment and quality of life.” (ID 226) | 7% | 7% | 4% | 3% |
| 9= | When there are supports available for shared accommodation (e.g., low density social housing; adapted housing with access to support as needed) |
“Disability housing with Supports in place.” (ID 1227) | 7% | 2% | 7% | 8% |
| 9= | When there are autism-friendly accommodations available (e.g., living with people with similar interest and lifestyles; accommodation that is simple and easy to navigate) |
“Special housing/complex for disabled people. From lived experience with a family member I know that the Autistic person is happier, they feel safe, they have something of their own, and something to be proud of. They have their own privacy, and space. Their mental health stabilises. They feel like everyone else.” (ID 1217) | 7% | 2% | 7% | 5% |
Note. *all other groups that have not been identified separately
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3.5.2 Umbrella review: Housing design
Two umbrella reviews were conducted under the Housing and independent living sections namely 1) housing design and 2) independent living. An umbrella review is a form of research that brings together the findings of all existing reviews (systematic and scoping) that report on a specific topic. The first review on housing design is presented below. However, the independent living review is presented towards the end of the section as this review was conducted in response to the findings of the housing research about autistic people’s independent living needs. This review focuses on the area of housing and housing design, particularly as it relates to the built environment. The search terms used, and the number of articles identified, screened, and included, are provided. Four systematic reviews were included in this umbrella review. Two of the four were led by Australian authors, and all reviews were conducted in the last 2 years. There were 96 individual studies reported across the four systematic reviews.
The information and findings from the included reviews are summarised in the subsections below. When reporting on the number of people or participants in the review, this will be represented as $n = [number of participants]$. When reporting on the number of reviews that considered a topic, this will be represented as $k = [number of reviews]$.
3.5.2.1 Setting of included reviews
The articles included in the systematic reviews ranged from peer-reviewed journal articles to conference papers, reports, and grey literature. Residential settings, including family homes and group or support care homes ($k = 47$), were considered in the systematic reviews, as were a range of additional settings. These included school or learning environments ($k = 36$), workplaces ($k = 1$), plazas ($k = 1$), vocational settings ($k = 1$), laboratory ($k = 1$), outdoor environment ($k = 3$), multiple settings ($k = 4$), and general spatial design for autistic people ($k = 2$). Only one study reported on the number of participants (Dargue et al., 2021; 73 participants), while two reviews highlighted that stakeholder consultations were conducted to validate their findings (Black et al., 2021, 6 participants; Nguyen et al., 2022, 13 participants).
3.5.2.2 Quality of included reviews
The quality of the included systematic reviews was assessed using the JBI Critical Appraisal Tool for Systematic Reviews. This tool assesses the methodological quality of a systematic review. The maximum score is 33, which indicates a very high-quality systematic review. The average quality score for the four included systematic reviews was 28 (84.8%), with the quality score ranging from 27 to 29.
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3.5.2.3 Topics of included reviews
The findings of the four systematic reviews identified in the area of autism and housing design can be summarised into three key topics: building structure considerations for autistic people ($k = 2$), sensory considerations in the built environment for autistic people ($k = 4$), and considerations for building interior features to accommodate autistic people ($k = 3$). The key findings for each topic are presented in Table 32.
3.5.2.4 Research gaps
Several research gaps were identified in the four reviews, which were combined with research gaps identified by the authors of this review in consultation (personal communication) with A/Prof Ebba Högström from the School of Planning at Blekinge Institute of Technology, Sweden. A/Prof Högström has conducted work in the area of planning sustainable living environments for people with psychiatric disabilities. These research gaps are summarised in Table 32.
Overall, there is a scarcity of research examining the experiences and needs of autistic people as it relates to housing design and the built environment generally. Consequently, there is a need for more high-quality research with larger samples in order to improve the generalisability of findings and translation to policy. Additionally, there is a need for research that is co-created or inclusive of autistic people as first-person sources, to ensure that their views, experiences, and needs are appropriately represented. Furthermore, there is a large gap in research related to the built environment needs of autistic adults. Much more research focuses on children, including the built classroom environment, which can be informative in understanding aspects of the environment that are supportive of autistic people.
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Table 32: Umbrella review findings for housing design
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Building structure considerations | $k = 2$ (Black et al, 2022)* (Tola et al., 2021) |
Flexible and adaptable design principles acknowledge that decisions made in the design of built environments can potentially facilitate the participation of autistic people. Some key considerations around structural elements include: - Building materials: Building materials that are easily cleaned and may provide a calming effect, such as cork, cotton, porcelain, and other natural materials are preferred. Materials that may be toxic, emit chemicals or gases, or hold dust should be avoided as they can cause unnecessary sensory stimulation. Additionally, non-slip vinyl floor coverings, durable wall paint, brick with impact resistance, and fortified windows were recommended to foster safety and reduce potential building damage that may be caused by behaviours of concern - Ceilings: Different ceiling heights should be adapted in different types of spaces based on their function. Generally, the study reported that lower ceilings improve the feeling of calm and comfort; however, higher ceilings are recommended for active, high-energy spaces. A ceiling height of nine feet (2.74m) was recommended by one study to reduce damage to building as well as reduce the risk of harm to individuals with higher support needs - Walls: Within interior spaces, half walls and curved walls help to create visual boundaries. Too many wall openings should be avoided in classroom settings as views outside may be distracting. Also, using bevelled wall corners instead of sharp corners helps to protect against injury - Entrance: It is recommended that buildings have multiple entrances and exits to help decrease noise levels and socio-sensory barriers to activity and participation for autistic people - Windows: Use double-paned or triple-glazed windows and place them above eye-level, or lower half-window covers to reduce distractions, especially in classroom settings |
- Limited research available that examines the housing design and the built environment experience and needs of autistic people - Need for more high-quality studies that are rigorously conducted and generalisable to groups of autistic people - Lack of co-produced research that focuses on exploring the needs, perspectives, and experiences of autistic people related to general built environment design - Need for more experimental practices and policies about design for autism and monitoring the outcomes of these for sustainability |
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| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Sensory considerations | $k = 4$ (Black et al., 2022) (Nguyen et al., 2022) (Dargue et al., 2021) (Tola et al., 2021) |
Most autistic people have concerns related to sensory stimuli. While personal variation exists, general recommendations were made: Orientation: - (Workplace settings) Autistic people who are hypersensitive to sensory stimuli are recommended to sit in an area where they can see the external landscape, or on the upper levels of a building. Hyposensitive individuals are recommended to sit near echoic city views or on the lower levels of the building Lighting: - Natural light is preferred to artificial light - LED light is preferred to fluorescent lighting, which tends to flicker and hum - Use dimmable or adjustable lighting with diffused light source as this reduces glare - Provide shade structures and trees in outdoor spaces Sound: - One review suggested that average sound level should be kept at 50 dB or below - Sounds from external sources, such as rain, adjacent rooms, appliances, or passing traffic, should be reduced where possible - Spatial sequencing and zoning can be used to reduce noise transfer across spaces - Use sound-proof walls, or thick concrete walls with hard plaster finish to reduce noise transmission - Sound-absorbing floors, carpets, non-reflective sound-absorbing materials on walls and ceilings, window coverings, and under-floor heating are also useful ways to reduce noise - Sound dampening techniques such as acoustic tiles with a high noise reduction coefficient (NRC) can also be used in high noise-producing areas - Odours: strong odours can also be a major concern for autistic individuals. - Spatial sequencing can be used to group odours (e.g., grouping kitchens and pools) |
- Need for more high-quality single case design studies exploring whether lighting and auditory modifications have a positive impact for autistic individuals in the home environment - Research needs to include details of the sensory profile of participants as a key descriptor in explaining research findings, so that context can be given when applying findings to real world situations and translation to practice and policy - Larger samples are needed in a variety of built environment settings to determine the impact of making sensory modifications and to enhance the generalisability of findings - Research focus on the sensory and other needs of autistic adults in the built environment, specifically related to housing |
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| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Considerations for building interior features | $k = 3$ (Black et al., 2022)* (Nguyen et al., 2022) (Tola et al., 2021) |
One review pointed to the importance of including autistic people in co-design of residential spaces to ensure that the space addresses their needs, helping to reduce anxiety about moving into a new space However, general recommendations focused on the importance of buildings’ interior features being predictable, clear, and consistent with the order of daily routines to reduce anxiety and disorientation. These recommendations included: Layout: - Organise spaces in a sequential manner consistent with users’ daily routine. One-way or straightforward circulations aided with wayfinding - Compartmentalise spaces into zones with clear boundaries and use wide corridors that are not too long. Circulations with sudden corners, blind corners, and abrupt transitions should be avoided - Spaces designed for socialising should be large enough to allow for personal space to be maintained without feeling crowded - Classroom settings can offer a choice of spaces to allow autistic children to navigate the classroom while allowing the teacher to see them easily - In residential care settings, floor plans should be repetitive and identical across units Wayfinding: - Use signs, maps, and colour coding to help navigate paths independently. Add visual features such as vegetation, distinct flooring, or walls to help with space differentiation Quiet room: - Provide a defined space that is low-stimulation or stimulation free to allow for calming as needed Transition spaces: - Transition spaces allow autistic people to orient themselves to sensory stimuli or manage social interactions (e.g., semi-private transitional spaces such as specially designed gardens, benches, and hammocks) Clutter: - Visual and physical clutter has been linked to disruptive behaviour among autistic children in the classroom. Keeping learning spaces organised and clean is recommended |
- Research findings tend to offer generic guidelines; research is needed that defines spatial criteria in such a way that they can be truly inclusive - Need for inclusion of autistic people and their supporters in co-design and consultation related to design of residential and urban building spaces where they will be users - Increase the quantity and quality of research related to the housing design and residential situation for autistic adults - More research is needed into the meaning of home and aspects of independent living needs and experiences of autistic people in different residential settings such as group, family or living alone |
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| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Colour: - Use soft, natural colours on walls, ceilings, and floors, and avoid bright, shiny, or reflective colours. Limit colour contrasts but use distinct colours for colour coding of spaces to aid wayfinding Patterns and textures: - Autistic people may have difficulty processing complex and bold geometry shapes, so simple designs are recommended. A balance of smooth and rough textures, and matte-finished tiles or textures, are preferred to shiny or polished textures Furniture and seating: - Personal taste in living space is important for autistic adults, so they should have choice in stating their preferences. As it relates to children in the classroom, one review found inconclusive results about whether balls and cushion seating were better than other traditional forms Indoor air quality: - Proper ventilation and airflow is important for autistic people as many tend to be sensitive to odours. A ventilation standard of around 40 cubic feet per minute per occupant and carbon filters for the removal of particulate matter was recommended in one review |
* Denotes review led by Australian author.
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3.5.3 Policy and guideline review
A search of publicly available domains, including government websites, search engines, and policy databases, was conducted using various combinations of the following keywords: “housing”, “accommodation”, “living arrangements”, “built environment”, “autis/m/tic”, and “policy”. Inclusion criteria for policies or guidelines were limited to those that were current or had not yet been superseded. This review focused on government (state, territory, and federal) policies concerning accommodations for living despite the policies including some broader discussion on built environment such as public transport, access to services and community spaces, use of technology, and access to information.
The National Disability Insurance Scheme Act 2013 legislates a participant’s plan to include living arrangements with reasonable and necessary support to enable inclusion in community as fully participating citizens. Many policies reference the NDIA as a funding source for adaptations or as an important collaborator when considering personalised housing options. Policies also reference compliance with the Liveable Housing Design Guidelines 2017, National Construction Code 2022, Australian Building Codes Liveable Housing Design Standard 2022, and Disability (Access to Premises - Buildings) Standards 2010. All are set to enable better choice for housing, to allow for adaptability, and to mandate design for physical accessibility. Notably, none of these guiding documents, nor the implemented state/territory disability plans, provide specific policy or recommendations on housing for autistic individuals. Statements related to broader disability are reviewed in Table 33.
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Table 33: Policy and guideline review findings for autism and housing
| Organisation name | Policy name | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|
| Australian Government (Federal) | Australian Government Response to the Select Committee on Autism (report): Services, support and life outcomes for autistic Australians (20202 | ✓ | ✓ | - NDIS funded supports to consider high proportion of autistic adults living in their family home and therefore the informal burden of care on parents and independent living options following the death of the participant’s parents or carers (Recommendation 68) - Review the Specialist Disability Accommodation Design Standard to ensure it accounts for the sensory issues experienced by autistic participants (Recommendation 69) which led to the NDIS Specialist Disability Accommodation Design Standard 2019 - Improved livability incorporates physical access and enhanced provision for people with sensory, intellectual, or cognitive impairment. |
| Australian Government (Federal) | Australia’s Disability Strategy (2021-2031) | × | ✓ | - An overall outcome for people with disability to live in inclusive, accessible, and well-designed homes and communities - Prioritises an increased availability of affordable housing - Prioritises choice and control about where to live, with whom they live, and who comes into their home. |
| State Government (WA) | A Western Australia for Everyone; State Disability Strategy (2020-2030) | × | ✓ | - Housing to support living well - Prioritises individual choice - Plans to equip the key services workforce with the right skills and attitudes. |
| State Government (WA) | WA Housing Strategy (2020-2030) | × | ✓ | - Providing tailored housing options - Strategic focus on purpose-built, safe, financially sustainable, and well-located homes with access to services - Utilising NDIS funding opportunities for building Specialist Disability Accommodation and property modifications - Reducing pressure on social housing and decreasing the number of young people with disabilities in aged care accommodation. |
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| Organisation name | Policy name | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|
| State Government (WA) | State Planning Policy 7.0 Design of the Built Environment (2019) | × | ✓ | • New developments should have some capacity to adapt to changing uses and demographics, such as an ageing population and people with disability. |
| State Government (SA) | Inclusive SA; State Disability Plan (2019-2023) The Community housing disability access and inclusion policy |
× | ✓ | • Integrating Universal Housing Principle in all social housing • Investment into 100 houses for use by community housing providers • Providers to have trained staff, necessary systems in place, and well-developed networks to support customers. |
| Territory Government (NT) | Northern Territory Disability Strategy (2022-2032) Northern Territory Housing Strategy (2020-2025) |
× | ✓ | • Increase the availability of housing that meets universal design principles, including urban and rural/remote stock • Specialist Disability Accommodation to be developed and designed for people who require a specialised housing solution that can assist with the delivery of supports. |
| State Government (VIC) | Inclusive Victoria State Disability Plan (2022-2026) | × | ✓ | • Mandated the “silver” Liveable Housing Design Guidelines as the minimum accessibility requirements in Victoria for new social housing and collaborates with the building and construction industry and disability advocates to transition • Prioritises affordable, stable, secure, and suitable housing for people requiring supported living, considering the principles of choice and control • The 10-Year Strategy for Social and Affordable Housing commenced but not completed by predicted 2022. |
| State Government (VIC) | Victoria Autism Plan (2019) | ✓ | ✓ | • For people with disability to have housing choices that are flexible, suitable, affordable, and accessible • Respond to the housing needs of autistic Victorians • A better understanding of the housing challenges for autistic people needed to drive greater oversight and accountability. |
| Organisation name | Policy name | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|
| State Government (TAS) | Accessible Island Tasmania’s Disability Framework for Action (2018-2021) Tasmania’s Affordable Housing Action Plan (2019-2023) |
× | ✓ | • To increase the supply of public and social housing properties with accessible design features • Dedicated investment to deliver more suitable homes to NDIS participants, including regional and rural areas • Assess needs of people with chronic mental illness and construct homes to ensure secure lease terms and the clinical support required to sustain their home. |
| State Government (QLD) | All Abilities Queensland: Opportunities for All State Disability Plan (2017-2020) The Queensland Housing Strategy (2017-2027) The Queensland Housing and Homelessness Action Plan (2021-2025) |
× | ✓ | • Ensuring people with disabilities exercise rights and control over their housing and community participation, promoting rights, choice, control, accessibility, and inclusion • Partnering with real estate, agencies, and key groups for inclusive housing responses that support vulnerable tenants, including those with disabilities • Co-design housing responses with people with disabilities • Recognising the increased vulnerability to disasters, abuse, and neglect affecting housing options. |
| State Government (NSW) | Better Placed: An integrated design policy for the built environment of New South Wales (2017) | × | ✓ | • A well-built environment is equitable (inclusive and accessible public spaces). |
3.5.4 Community views, research evidence, and policy/guideline alignment and gap analysis
In addition to the research gaps identified as part of the research landscape mapping, a comprehensive gap analysis was conducted (see Figure 6 for process). The gap analysis provides a comparison between the current state (predominantly based upon the community views analysis but also some findings of the umbrella review and policy review) and an improved future state (based upon community views around what is working well, policy review, and some umbrella review findings).
Figure 6: Gap analysis: Current to improved future state
The gap analysis for the housing and independent living section puts into focus steps that can be taken to better meet the housing needs of autistic people.
3.5.4.1 There needs to be improved housing accessibility for autistic people
Current state
The community views survey indicated that autistic people face a number of challenges when trying to access housing. The primary issue noted was related to a lack of adequate support or government funding to get or sustain housing. This was explained in the context of long wait times for public housing and high rates of unemployment among autistic people which prevents them from being able to independently afford housing. The community views survey also pointed out that autistic people experience difficulty navigating the government systems and rental processes which become barriers to their ability to access housing. There was an absence of research identified in the umbrella review that considered accessibility of housing for autistic people; however, it is clear that this is a central concern for autistic people.
Improved future state
The community views survey indicated that rent assistance, disability housing with supports, and providing flexible funding that addresses individual circumstances work well for autistic people. Multiple policies specified the provision of housing support that is tailored for people with disabilities. “Australia’s Disability Strategy” (2021) document in the policy review indicated the need to increase housing availability and affordability for people with disability. However, among the government policies reviewed, only two spoke to housing in relation to autistic people. The Australian Government response to the Select Committee on Autism (report): Services, support and life outcomes for autistic Australians specifically addressed the housing needs of autistic people and spoke to the need for government agencies that provide funding support for housing, such as the NDIS, to consider the informal burden of care on parents and independent living options available to autistic people. Furthermore, the “Victoria Autism Plan” (2019) outlined the need for a better understanding of the housing needs of autistic people to be able to improve oversight and accountability in aligned government bodies.
Steps that can be taken to move from the current to the improved future state include:
- Further consultation with the autistic community to identify the specific challenges that autistic people experience with accessing housing to enable simplifying processes and identifying ways that funding support can be made more flexible to better meet their housing needs.
- Co-developing (developing along with the autistic people and autism communities) autism-specific pathways for housing access for autistic people with varying levels of support needs.
- Government initiatives to address general rental shortages (relevant to, but not specific to, the autistic community).
3.5.4.2 There needs to be more education across government and non-government agencies and bodies about autism and the needs of autistic people
Current state
The community views survey revealed that many of the challenges autistic people experience related to accessing housing are due to a lack of awareness and understanding of autism and the needs of autistic people and what works for them. This results in autistic people feeling that government policies and decisions are inadequate in meeting their needs as they are made without consideration of their needs and experiences. It also results in autistic people feeling that they are stigmatised and discriminated against in the rental market. The research landscape mapping results align with the community views, also indicating that there is a lack of co-produced research that focuses on the needs, perspectives, and experiences of autistic people as it relates to housing.
Improved future state
The community views survey indicated that having housing staff in government and non-government agencies that understand autism and the needs of people with autism would help to reduce the problems autistic people experience with housing. The community views survey also highlighted that having partnerships with autism specialised support, and support to assist with securing and sustaining private housing, would be very beneficial to autistic people. None of the policies in the policy review directly addressed autism training needs of personnel in housing agencies. However, the community views survey highlights that this is an important step to be able to improve the experiences and housing outcomes for autistic people.
Steps that can be taken to move from the current to the improved future state include:
- Co-creation (where the autistic community equally collaborates and contributes) of evidence-based autism-specific training that is tailored towards professionals in the housing space including government bodies as well as rental estate associations or networks
- Provide rights-based training for autistic people that will sensitise them to their rights and responsibilities regarding housing and tenancy. This should include outlining rental processes, expectations and rights related to home maintenance and home inspections
- Provide assistance that supports autistic people to better understand rental contracts/agreements and better navigate private rental processes
- Increase awareness and advocacy for autistic people in the housing sector among government and non-government bodies to foster understanding of autism and aid in autistic people securing private housing.
3.5.4.3 There needs to be more suitable housing options for autistic people
Current state
The community views survey highlighted that there is a lack of suitable housing options for autistic people that meet their various needs. Many autistic people have specific needs relating to building layout, sensory exposure, safety, and personal space. However, the community views survey revealed that there is an absence of available public housing designed specifically to meet the needs of autistic people. These challenges extend to the private rental market that often has strict rules prohibiting tenants from having pets or making modifications to properties. These restrictions prevent autistic people from making adaptations to their living spaces to meet their needs.
The research landscape mapping supports the community views that speak to the needs of autistic people. It highlighted that autistic people may have varying levels of sensory sensitivities and suggested a number of considerations that can be made to building and residential design that can best accommodate them. Additionally, it pointed out the need for experimental practice and policies that foster inclusion of autistic people in the design processes of residential and urban spaces of which they will be users, and monitoring of these outcomes for sustainability.
Improved future state
The community views survey highlighted that having regulations that allow autistic people to make subsidised changes to their homes is one way to reduce the problems they experience with suitable housing. All the policy documents reviewed discuss the need for suitable housing accommodations for people with disability. However, only the “Australian Government Response to the Select Committee on Autism (report): Services, support and life outcomes for autistic Australians” policy review outlines the need for improved suitability of housing that accommodates the varying sensory, physical, and intellectual needs of autistic people.
Steps that can be taken to move from the current to the improved future state include:
- Co-design and consultation with the autistic community (with autism community involvement and contribution) related to suitable residential design for new public housing accommodations for which they will be users. Michelle Dival’s Churchill Fellowship report (2017) offers a thorough examination of informed neurodiverse housing and design, complete with clear guidelines that could help government bodies, industry organisations, and private housing providers better understand and allow for such choice (churchilltrust.com.au/fellow/michelle-dival-wa-2017/)
- Further consultation with the autistic community and other relevant stakeholders regarding a scope of practical modifications that may be permissible in the context of private rental accommodations that can be used for legislative purposes
- Increase advocacy and accountability measures that ensure that policy guidelines related to access to suitable housing are upheld
- Consideration for housing design should take into consideration the wider living environment and issues that relate to accessibility for autistic people.
3.5.4.4 Autistic people need to have more options and choice about the type of living arrangement that will work best for them
Current state
The community views survey highlighted that autistic people feel that they have few options and little choice in their living arrangements. Specifically, there are a lack of options for autistic people to live independently outside of shared housing or with family. The community views survey indicated that autistic people may experience challenges to safety and well-being in shared housing, yet may lack the support they need and/or financial resources to live alone. The research landscape mapping also showed a lack of research exploring the needs and experiences of autistic people living in various residential settings and the specific skills autistic people need to live in each setting, such as in shared housing or on their own.
Improved future state
The community views survey highlighted that housing arrangements work well for autistic people when they have a choice in where they live and have independent living support. Multiple policies in the policy review indicated that people with disabilities have a right to choose where they live and that, as much as possible, housing arrangements should accommodate the preferences of individuals. However, only the “Australian Government Response to the Select Committee on Autism (report): Services, support and life outcomes for autistic Australians” policy initiative gave direct consideration to autistic people’s need for choice in living options to affirm their autonomy and right to self-direction.
Steps that can be taken to move from the current to the improved future state include:
- Further consultation with the community to explore the independent living needs of autistic people. These findings can be used to inform strategies to improve independent living skills of autistic people as well as to identify specific types and levels of support that autistic people need to live independently
- Co-development (developing along with the autistic people and autism communities) of autism-specific pathways for different housing options, including living alone. This should take into consideration various levels of independent living support available and be built using a needs and feasibility approach.
3.5.5 Umbrella review: Independent living
The research team, in recognising the gap in information related to the independent living in the housing component of the section, undertook an umbrella review to bring into focus existing research reviews (systematic and scoping) on this specific topic. The search terms used, and the number of articles identified, screened, and included, are provided in Appendix H-6. Eighteen systematic reviews were included in this umbrella review; none were led by Australian authors and 10 (56%) were conducted in the last 5 years. There were 353 individual studies reported across the 18 reviews.
The summarised findings and information from included studies can be found in the subsections below. When reporting on the number of people or participants in the review, this will be represented as n = [number of participants]. When reporting on the number of reviews that considered a topic, this will be represented as k = [number of reviews].
3.5.5.1 Participants within included reviews
Fourteen reviews reported on the number of participants, which represent a total of 1,042 with sample sizes in individual studies ranging between one and 50 participants. Of these participants, 919 were reported to be autistic. Only nine reviews provided information on the gender of autistic participants; most were male (average percentage = 79.2%) and ranged in age from 2 to 55 years.
3.5.5.2 Quality of included reviews
The quality of the included systematic reviews was assessed using the JBI Critical Appraisal Tool for Systematic Reviews. This tool assesses the methodological quality of a systematic review. The maximum score is 33, which indicates a very high-quality systematic review. The average quality score for the 18 included systematic reviews was 27 (81.8%), with the quality score ranging from 18 to 33.
3.5.5.3 Topics of included reviews
The findings of the 18 systematic reviews identified in the area of autism and independent living can be summarised into three key topics. These were strategies for teaching independent living skills to autistic people (k = 18), under-researched aspects of independent living skills (k = 7), and under-researched populations (k = 11). The key findings for each topic are discussed in Table 34.
3.5.5.4 Research gaps
All of the included reviews were conducted on intervention research to assess the effectiveness of various strategies to teach independent living skills to autistic people. Across the systematic reviews, several research gaps were identified and combined with other research gaps identified by the authors. These research gaps are summarised in Table 34.
It is noteworthy that none of the reviews identified under the umbrella review for independent living were conducted in Australia. This indicates a large research gap within the autism research space. The review indicates that a wide range of intervention strategies and designs have been found to be successful in teaching independent living skills to autistic people, with video-based instruction leading as the most common strategy being employed across the literature. Caregiver and peer-implemented interventions were also found to be promising in teaching independent living skills. However, across the body of research, there was a lack of consistency in definition and type of independent living skills being taught, as well as inconsistency in outcome measures and methodological quality across studies. This poses challenges to drawing conclusions and confirming best practices for interventions in this domain.
Another notable limitation in the review is the lack of evidence related to the maintenance and/or generalisation of independent living skills captured in research studies. This also limits the generalisability of the findings as there is a lack of conclusive evidence that acquired skills lead to long-term improvements in daily functioning. Consequently, there is a need for more high-quality research that targets the core independent living skills needed for navigating daily life and that embeds mechanisms to assess maintenance and skill generalisation into the design and reporting process. There is also substantial need for research that includes females, adults, and autistic people from diverse backgrounds to more holistically assess intervention strategies that work best across populations or that are specific to certain populations.
FOI 24/25-1567
Table 34: Umbrella review findings for independent living
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Strategies for teaching independent living skills to autistic people | k = 18 (Aljehany & Bennett, 2019) (Auld et al., 2022) (Bennett & Duke, 2014) (Flynn & Heely, 2012) (Hong et al., 2017) (Hong et al., 2016) (Hrabal et al., 2022) (Kirby, 2016) (Marcotte et al., 2020) (McGinnis et al., 2023) (Munsell & Coster, 2021) (Neely et al., 2016) (Palmen et al., 2012) (Skjoldborg et al., 2022) (Syriopoulou–Dell & Sarri, 2022) (Taconet et al., 2023) (Wertalik & Kubina, 2017) (Yakubova & Baer, 2022) |
• The most common independent living skills across the literature were housekeeping (cleaning, washing, laundry skills, etc.), self-help skills (meal preparation), social skills (initiating and engaging in social interaction, understanding social cues, etc.) and practical skills (money management, time management, navigation, etc.) • A wide range of intervention modalities are effective in teaching independent living skills to autistic people to increase their autonomy • Teaching strategies for independent living skills largely incorporated prompting in various forms (video, auditory, gestural, hand-over-hand, or least-to-most prompting) • The use of video-based instruction has emerged as a dominant modality for teaching independent living skills • The use of technology-based interventions such as video modelling and video prompting has demonstrated positive outcomes in teaching independent living skills: – Multiple diagnostic categories: autism, autism and intellectual disability, and cognitively “high-functioning autism” or Asperger syndrome – Age groups: young children to adults – Video modelling is moderately effective for teaching employment skills, house chores, and community access skills to autistic adolescents and adults and strongly effective for teaching self-help skills – Video modelling and video prompting are well accepted as an intervention method by autistic adolescents as it allows greater autonomy and decreases the need for human intervention providers – Video modelling and video prompting are effective when used as a specific intervention modality, as well as when combined with other strategies – Video-based instruction demonstrates positive results for skill maintenance and generalisation – Technology tools are versatile and can be used to teach multiple skills; for example, a tablet can show videos, provide an app for scheduling activities, and a budgeting app for expenses |
• Most research conducted in school settings where skills are not applicable. There is a need for intervention research conducted in natural and community settings • Future research should evaluate generalisation of acquired skills continuously, particularly in the natural setting • Additional research should continue to explore the effectiveness of technology such as smartphone or tablet applications, audio prompts, videoconferencing, visual schedules, and augmented or virtual reality to teach independent living skills as an incorporation in the daily living practices of autistic adults • Co-design of interventions with the autistic and autism community that will facilitate the optimising of integration of interventions into daily living and improve outcomes • There is a lack of methodologically strong designs in the area of virtual reality via head-mounted display to provide firm conclusions about its effectiveness • There is a need for more research with bigger sample sizes to improve generalisability of findings related to outcomes • Future studies should examine the level and type of training necessary to train parents to implement video-based instruction as primary agents of change versus complementary agents of change • There is a need for more group design studies that can increase the generalisability of findings |
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| (Table 34 continued) | • Peer-mediated intervention (PMI), which involves training peers to act as intervention agents that implement instructional programs and teach self-help and social skills and behaviours, was identified as being very effective • Caregiver-implemented interventions also improve outcomes for autistic individuals: – Caregivers rate these interventions as being high in social validity and implement interventions with high fidelity to outlined intervention protocols – Behaviour skills training (i.e., written or verbal instructions, modelling, rehearsal, and feedback) were key components of the training package for caregivers conducting these interventions – The inclusion of caregivers in the development of independent living skills interventions can increase adherence to procedures – Caregiver-implemented interventions occur in natural settings where skills can be used, generalised, and maintained through practice in the everyday context • Interventions using virtual reality technology using head-mounted display suggest general positive outcomes on target independent skills such as handling money, shopping skills, and riding the bus. This technology may show promise in advancing the teaching of independent living skills through: – The use of sensory input adjusted scenarios based on the individual’s needs, or through the gradual increase of difficulty in the learning scenario – Its ability to be manipulated in real time. Participants are able to replay the same scenario and implement changes in behaviour in response to the scenario and observe effects and outcomes – Its flexibility for individualised design and implementation – Further research should explore the potential advantages of modulating sensory stimuli and adjusting task difficulty to improving learning outcomes as well as personalised design to improve outcomes • Interventions conducted in natural settings yield more positive outcomes relating to generalisation and maintenance of skills than those conducted in contrived settings • High school special education services that taught independent living skills are positively predictive of adult employment and independent living outcomes |
• Future comparative research that examines virtual reality head-mounted display interventions to other intervention modalities to determine relative effectiveness • More research that includes an assessment of improvements in life skill in real-world settings along with follow-up assessments. This would allow for firmer conclusions regarding the ability of autistic individuals to successfully transfer skills acquired within the virtual learning environment to the real world • Additional replication studies needed that assess the effects of social validity on video-based instruction with diverse samples • Future studies using caregiver implemented interventions need to include specific, detailed description of parent training methods, parent characteristics, and child demographic information and autism characteristics to improve generalisability |
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Under-researched aspects of independent living skills | k = 7 (Auld et al., 2022) (Bennett & Duke, 2014) (Flynn & Heely, 2012) (Hong et al., 2017) (Hrabal et al., 2022) (Neely et al., 2016) (Taconet et al., 2023) |
• Self-help skills, house chores, safety skills, and skills related to accessing the community are largely absent from the independent living research • There is limited research targeting personal care skills such as grooming, hygiene, and dressing as areas of focus for independent living skills. This is notable as challenges with dressing, grooming, and hygiene are particularly prevalent among autistic individuals • Very few studies included the subjective experience of autistic individuals and their families about perceived barriers and enablers to acquiring independent living skills. A thorough understanding of perceived barriers and enablers to skill acquisition can result in interventions that are customised and better suited to meet the needs of autistic people |
• More focus on independent living skills that focus on core skills needed for autistic people to improve their independent functioning • More research should position parent as implementer of interventions to enhance application of independent living skills in daily living • Future research that explores the enablers and barriers to acquiring independent living skills among autistic people and their families • Need for more replication studies that can serve to improve the generalisability of their conclusions • More research designed to measure and assess generalisation and maintenance of acquired skills over medium to long term |
| Under-researched populations | k = 11 (Aljehany & Bennett, 2019) (Bennett & Duke, 2014) (Flynn & Heely, 2012) (Hong et al., 2016) (Kirby, 2016) (Marcotte et al., 2020) (McGinnis et al., 2023) (Munsell & Coster, 2021) (Palmen et al., 2012) (Taconet et al., 2023) (Wertalik & Kubina, 2017) |
• Current research mainly done with autistic males and not representative of females or other gender identities • Most of the independent living skills research is conducted with children and adolescents. There is a need for more research among the adult population • There is limited research on teaching independent living skills to young autistic adults with low support needs; however, one review indicated that behavioural interventions can be successfully used to improve adaptive skills among this group, particularly around improving task engagement • There is a paucity of research on teaching independent living skills to autistic people with a diagnosis of severe or profound autism • There is a paucity of independent living research related to autism that incorporates or reports on diversity in participant characteristics such as ethnicity, co-morbidities (physical and mental health), and socioeconomic status |
• Research should report on basic participant characteristics such as age and gender • More research that considers the independent living skills needs of students at the post-secondary education level • Need for more studies that include autistic adolescents/youth in the development of intervention or goal-selection process to increase the social validity of interventions |
3.6 Justice
3.6.1 The “1,000 Insights” community views survey
A total of 166 respondents answered at least one of the questions on the justice system. This included 86 autistic people and 110 family members or carers of autistic people. The 10 most frequently reported responses are reported within this section. However, the full list of response codes for each question within the justice domain is available in Appendix I-1.
The tables for each question describe the response categories (with example participant responses) in order from the most frequently reported to the least frequently reported. For each category, percentages are provided to indicate the proportion of a respondent group whose response reflected the specific category. These groups are: (a) the entire sample (i.e., everyone), (b) autistic people, (c) family members/caregivers of autistic people, and (d) all respondents who are not represented in one of these groups.
3.6.1.1 Problems experienced by autistic people in relation to the justice system
A total of 166 respondents opted to answer this question on the justice system. This included 86 autistic people and 110 family members or carers of autistic people. The problems experienced were coded into nine categories, which fall under the following six broad areas:
- Lack of autism-specific knowledge, awareness, and understanding of professionals in the justice system
- Adjustments and accommodations not offered or supported within the justice system for autistic people
- Autistic language and communication styles or preferences not accounted for or misinterpreted
- Autistic people feeling scared of, dismissed by, or experiencing discrimination from those in the justice system
- Lack of consideration about how autism may be a factor in how a person became a victim and/or committed a crime
- Limited identification of autism and/or co-occurring conditions.
Table 35 ranks the nine problems that autistic people experience in relation to the justice system (based on the survey responses). The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem. Note that respondents often identified within multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the number of respondents in subgroups exceeds the total number of all respondents.
Of note is that these data show that approximately:
4 in 10 respondents highlight that professionals in the justice system have a poor understanding or knowledge of autism and how it presents in different people or contexts.
1 in 4 respondents highlight that the justice systems or settings (including physical or sensory settings) are not supportive for autistic people, sometimes leading to an inability to function or cope.
1 in 5 respondents highlight that characteristics of autism or the behaviour of autistic people (including meltdowns and shutdowns) are misinterpreted or treated as a criminal issue.
Table 35: 9 most frequently reported problems experienced by autistic people in relation to the justice system
| Rank | Problems experienced by autistic people in relation to the justice system and sample quotes from responses | Direct insight | % who stated this as a problem |
|---|---|---|---|
| All respondents N = 166 |
|||
| 1 | Poor understanding or knowledge of autism and how it presents in different people or contexts (e.g., specific presentations of autism, and variability in autism profiles, are not understood) |
“Professionals in the justice sector having extremely inaccurate ideas about what autism is and how autistic people might function or present in a given context.” (ID 195) “Appalling understanding in fact (I am a Dr/GP working in justice health) in that even the forensic psych have little awareness.” (ID 448) |
39% |
| 2 | Justice systems or settings (including physical or sensory settings) not supportive for autistic people, sometimes leading to an inability to function or self-regulate (e.g., justice system contexts like courtrooms are overwhelming on a sensory level; processing and responding to complex information under stress is very difficult for autistic people) |
“Autistic victims of crime may have more difficulty describing their experiences to police due to their sensory/social needs not being accommodated.” (ID 290) “The rigid structure of the justice system often does not accommodate the needs of an autistic person. They often need a /ot of support to stay involved. The drawn out process of a judicial case can be very traumatic for an autistic person, to the point that they will not continue to participate.” (ID 1511) |
24% |
| =3 | Characteristics of autism or autistic behaviour (including meltdown, shutdown) misinterpreted or treated as criminal issue (e.g., minimal eye contact viewed as sign of guilt) |
“Meltdowns perceived as defiance and aggression.” (ID 381) “My brother used to have a /ot of issues with the local police because they didn’t understand his behaviours were the result of autist meltdowns.” (ID 935) |
22% |
| Rank | Problems experienced by autistic people in relation to the justice system and sample quotes from responses | Direct insight | % who stated this as a problem |
|---|---|---|---|
| All respondents N = 166 |
|||
| =3 | Adjustments or accommodations not offered or system not taking into account needs of autistic people (e.g., lack of access to advocates experienced in supporting needs of autistic people; lack of support during police interviews; lack of clearly communicated information) |
“Lack of support to provide us with legal info, legal advice and support through am [sic] end to end legal process.” (ID 1085) “Lack of access to independent advocates who are experienced with the support needs of autistic people.” (ID 1159) |
22% |
| 5 | Autistic language and communication styles or preferences not accounted for or misinterpreted (e.g., autistic people’s communication style/needs not respected or heard) |
“Police and courts not being able to talk at their level of understanding and mistaking not understanding questions asked as lying.” (ID 528) “Not being heard or understood by law enforcement and the justice system.” (ID 1004) |
20% |
| 6 | Autistic people feeling scared of, dismissed by, or experiencing discrimination from those in justice system (e.g., being treated as having less rights than non-autistic people; not getting a fair say/fair defence) |
“The fear that professionals instil into people with AUS.” (ID 1303) “Rights and interests are not addressed or even recognised.” (ID 1436) |
18% |
| 7 | Autistic people may not understand laws or legal or justice system (e.g., autistic people may not understand legal systems/processes; may not understand, or may have a different perspective of, what they have done) |
“Not really knowing what [it’s] all about. Others thinking the person with autism does understand [what’s] happening when they engage with justice system when they do not or at least not fully.” (ID 1093) “They could be misled by the police into a false confession because they are easily led, want to please and may believe it if the police inform them they do not need a lawyer.” (ID 1172) |
12% |
| Rank | Problems experienced by autistic people in relation to the justice system and sample quotes from responses | Direct insight | % who stated this as a problem |
|---|---|---|---|
| All respondents N = 166 |
|||
| 8 | Increased risk of entering criminal justice system including through manipulation, coercion, or not fully understanding the implications of an act (e.g., autistic people’s trust may mean they do not recognise when they are victims of, or committing, crime) |
“People with autism are being manipulated and coerced by criminals to commit crimes they have no understanding of - even if they have high IQ. I have a university degree but was naive when someone asked me to hold a brown paper bag full of drugs. He told me there was ‘stuff’ in the bag and I believed him. It was only when I told the story to someone else they told me it was illegal and I could have been convicted of assisting with drug dealing.” (ID 60) | 10% |
| 9 | Limited identification or understanding of undiagnosed autism and/or co-occurring conditions (e.g., behaviours of undiagnosed autistic people may be misinterpreted as criminal; lack of understanding around higher incidence of mental health challenges in autistic population) |
“Lack of understanding of co-occurring conditions.” (ID 910) “[Many] incarcerated people would qualify for a diagnosable mental health ‘disorder’ many are undiagnosed neurodivergent.” (ID 974) |
7% |
Note. *all other groups that have not been identified separately
3.6.1.2 Factors causing the problems experienced by autistic people in relation to the justice system
A total of 124 respondents opted to answer this question on the justice system. This included 64 autistic people and 89 family members or carers of autistic people. The factors that respondents felt were causing or leading to the problems experienced by autistic people within the justice system were coded into eight categories, each falling under their own broad area:
- Lack of autism training/education to enhance knowledge, minimise misinterpretations, or address stigma/assumptions
- Limited adjustments or accommodations provided to autistic people accessing the justice system
- Funding limits access to supports and services for autistic people accessing the justice system
- Issues relating to the policy, laws, and systemic factors governing the justice system
- The justice system is based on neurotypical norms and expectations
- Many people within the justice system are undiagnosed autistic and there is no pathway to receive a diagnosis within justice system
- Autistic people experience ableism and other forms of discrimination/indifference from those in justice system
- Autism characteristics may increase vulnerability to becoming involved in justice system.
Table 36 ranks the eight most commonly reported factors that respondents felt were causing the problems that autistic people experience in relation to the justice system. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.
Importantly, these data show that approximately:
3 in 5 respondents stated that the problems were due to the lack of autism training/education to enhance knowledge, minimise misinterpretations, or address stigma/assumptions.
1 in 5 respondents reported that the problems were due to limited adjustments or accommodations provided or available to autistic people accessing the justice system.
Table 36: 8 most frequently reported factors causing the problems experienced by autistic people in relation to the justice system
| Rank | Factors causing the problems experienced by autistic people in relation to the justice system and sample quotes from responses | Direct insight | % who stated this as a problem |
|---|---|---|---|
| All respondents N = 124 |
|||
| 1 | Lack of autism training/education to enhance knowledge, minimise misinterpretations, or address stigma/assumptions (e.g., lack of training for police on autism; lack of understanding/awareness of autism within the justice system) |
“Police are improperly trained regarding interactions with autistic people and misidentify autism symptoms as drug use or uncooperative behaviour.” (ID 81) “Lack of training regarding neurodivergent needs and accommodations.” (ID 1471) |
57% |
| 2 | Limited adjustments or accommodations provided or available to autistic people accessing the justice system (e.g., adjustments not made in prisons and courts; lack of safe spaces away from crowds) |
“Disability rights and reasonable adjustment not being applied consistently throughout Australia’s justice systems.” (ID 937) “Sensory overload. For example physical contact from strangers being unpleasant and uncomfortable for people with Aspergers.” (ID 1481) |
19% |
| 3 | Funding limits access to supports and services for autistic people accessing the justice system (e.g., Legal Aid is busy and has too many cases to get through) |
“Not having full legal aid help available here in Australia for low-income earners.” (ID 153) | 15% |
| 4 | Policy, laws, and systemic issues governing the justice system (e.g., the justice system does not listen to the community) |
“Lack of desire to be inclusive. A culture of exclusion and suppression of marginalised groups.” (ID 195) “Systemic disrespect for anyone in trouble with the law — treated like a ‘criminal’ even before trial and it is very distressing for a person with autism.” (ID 897) |
13% |
| Rank | Factors causing the problems experienced by autistic people in relation to the justice system and sample quotes from responses | Direct insight | % who stated this as a problem |
|---|---|---|---|
| All respondents N = 124 |
|||
| 5 | Justice system is based on neurotypical norms and expectations (e.g., concepts of criminal or untrustworthy behaviour are centred on neurotypical norms; the structure of the justice system is designed for neurotypical/male people; justice system doesn’t cater for those who struggle with self-advocacy/communication) |
“Neurotypical bias of systems, processes, policies, expectations.” (ID 699) “Neurotypical world view which feeds stigma and discrimination against autistic people. For example, in a court room, an autistic person giving evidence may not give eye contact, look around, have pauses between questions, answer questions without hearing them and require questions be repeated. Neurotypical people in a jury could view these behaviours as showing the witness is untrustworthy, not telling the truth etc.” (ID 873) |
10% |
| =6 | Undiagnosed autism and no pathway to receive a diagnosis with justice system (e.g., lack of diagnosis of autism; lack of diagnosis of co-occurring conditions) |
“Law enforcement is not equipped to deal with undiagnosed disabilities such as ASD.” (ID 60) “[Autism] assessment of people in judicial system is flawed and inadequate.” (ID 1499) |
7% |
| =6 | Autistic people experiencing ableism and other forms of discrimination/indifference from those in justice system (e.g., discrimination of those with intersectional identities; police aggression) |
“Systemic issues and intersectional discrimination.” (ID 637) “Police too aggressive and not listening (I have physical bruises and cuts).” (ID 1475) |
7% |
| 8 | Autism characteristics may increase vulnerability to becoming involved in justice system (e.g., criminals identify autistic people as gullible and exploitable; autistic people can experience grooming and predatory behaviour) |
“Vulnerability to social isolation and malicious group influences.” (ID 492) “Not being able to differentiate between who is a ‘good’ friend and who is a ‘bad’ friend.” (ID 1212) |
6% |
3.6.1.3 Factors that could prevent or reduce the problems experienced by autistic people in relation to the justice system
A total of 128 respondents opted to answer this question on the justice system. This included 60 autistic people and 88 family members or carers of autistic people. The factors that respondents identified as preventing or reducing the problems experienced by autistic people within the justice system were coded into eight categories. These categories fall under the following six broad areas:
- Enhancing autism-specific knowledge, awareness, and understanding of professionals in the justice system and broader community
- Providing supports, adjustments, and accommodations within the justice system for autistic people
- Making amendments to the policy, law, and systemic issues governing the justice system to take into consideration autistic people
- Support the acceptance and awareness of autism within the broader community/society
- Consultation with autistic/neurodivergent people to ensure the justice system is appropriate for autistic people
- Develop a means to better identify that a person is autistic (e.g., through assessment and diagnostic services within the justice system and more broadly; identification cards).
Table 37 ranks the eight most commonly reported factors that respondents reported could prevent or reduce the problems that autistic people experience in relation to the justice system. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.
Importantly, these data show that there was a clear, predominant factor highlighted by respondents:
Nearly 2 out of every 3 respondents stated that training in autism could prevent or reduce the problems experienced by autistic people in relation to the justice system.
Table 37: 8 most commonly reported factors that could prevent or reduce the problems experienced by autistic people in relation to the justice system
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to the justice system and sample quotes from responses | Direct insight | % who stated this as a problem |
|---|---|---|---|
| All respondents N = 128 |
|||
| 1 | Provide education/training to improve awareness understanding, and knowledge of autism associated characteristics, and how to work with/ support autistic individuals in the justice system (e.g., knowledge of how to respond to autistic people; training for police) |
“We need to provide more education to lawyers, [m]agistrates, barristers and anyone else involved in the justice system around autism and how we could be better supported during what most likely could be the lowest point in our lives as victims or accused.” (ID 400) “Education and professional support about what it means to live with autism, how to communicate effectively with people with communication difficulties, and the implication of living with sensory issues and other factors that impact behaviour and experience in the world.” (ID 1308) |
63% |
| 2 | Improve access to appropriate and sufficient supports across areas (i.e., social supports, legal supports, other professional supports, mental health, written information) (e.g., extra time to process questions; not needing to attend court in person; access to support people) |
“Disabled people should automatically be granted […] a case worker/social worker to help them understand what is happening.” (ID 81) “Provision of information pamphlets with photos of the court environment and information about procedures. Provision of an information pamphlet explaining procedures when police are involved e.g., witness interview, what happens when arrested, explain protective custody.” (ID 1546) |
20% |
| =3 | Amendments needed to the policy, laws, and systemic issues governing the justice system (e.g., policy reform to be more inclusive of difference; reform to state discrimination laws) |
“Severe punishments for those that use force against autistic meltdowns.” (ID 277) “Law reform and embedded processes on recognising and understanding ASD in the legal system for both criminal and civil matters.” (ID 616) |
15% |
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to the justice system and sample quotes from responses | Direct insight | % who stated this as a problem |
|---|---|---|---|
| All respondents N = 128 |
|||
| =3 | Foster the use of an individualised approach and accommodation of individual needs (e.g., use of interpreters when communication is difficult) |
“Well we’ve busted our redacted in recent years trying to mitigate [state police] responses to my son’s incidents by application for an interagency response team of [state ambulance services] and [state police] in a tiered response plan to attend the house instead of [supported independent living] staff calling [state police] alone for emergency assistance when negotiation between my son and his staff fails (2:1).” (ID 1119) |
15% |
| 5 | Develop ways to positively impact broader community/societal factors that increase autism acceptance or awareness (e.g., more widespread information about autism; public education about autism) |
“Education including community awareness program.” (ID 47) | 10% |
| 6 | Ensuring the perspectives of autistic people are included in training/education or decisions about the justice system (e.g., education about autism from neurodivergent/autistic individuals; including the perspectives of autistic people in police training) |
“Voice of autistics in police training and ongoing learning.” (ID 1127) “Education and training from Autistic led organisations.” (ID 1512) |
8% |
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to the justice system and sample quotes from responses | Direct insight | % who stated this as a problem |
|---|---|---|---|
| All respondents N = 128 |
|||
| 7 | More neurodivergent or trained/caring professionals within the justice system (e.g., specialised staff within the justice system; employing autistic/neurodivergent correctional officers) |
“Employment of neurodivergent individuals at all levels.” (ID 501) “Actually employ people who understand and care in all the systems that try and prevent a person from being engaged in the justice system. I had a client in his 20’s who was functioning at 2 year old level and could not speak so would enter shops and take items — and was charged for shop lifting and then thrown in Jail — he was mentally 2 years old. Everyone feared him because he was 7 foot tall.” (ID 853) |
6% |
| 8 | Develop a means to better identify that a person is autistic (e.g., through assessment and diagnostic services within the justice system and more broadly; identification cards, etc.) (e.g., diagnostic assessments should be available for those in the justice system) |
“On licence or identification stating [autistic] with need for quiet tone, gentle lights and extra processing or something equivalent.” (ID 596) “Clinical assessment for all individuals at risk of a custodial sentence (not a court clinician but an experienced consultant with appropriate qualifications).” (ID 426) |
5% |
Note. *all other groups that have not been identified separately
3.6.1.4 Factors that are working well, or have worked well, for autistic people in relation to the justice system
A total of 56 respondents opted to answer this question on the justice system. This included 34 autistic people and 42 family members or carers of autistic people. From these responses, the factors that are reported to be working well, or have worked well, for autistic people in relation to the justice system were coded into five categories, which fall under four broad areas:
- Nothing is working well/has worked well
- When there is autism-specific knowledge, awareness, and understanding of professionals in the justice system gained via training and first-hand knowledge and experience
- When there is advocacy, access to supports/funding, and accommodations when engaging with the justice system
- “Don’t know”.
Table 38 ranks the five most commonly reported factors that respondents reported to be working well, or have worked well, for autistic people in relation to the justice system. The data are ranked from most frequently reported to least frequently reported factors that are working well across all respondents. The right-hand columns report what proportion of specific respondent groups reported this as a factor that is working, or has worked well.
Importantly, these data show that approximately:
1 in 2 respondents did not feel that anything is working/has worked to support autistic people within the justice system.
1 in 4 stated that when there is autism-specific knowledge, awareness, and understanding of professionals (gained via training and first-hand knowledge and experience), the justice system works well.
Table 38: 5 most frequently reported factors that are working well, or have worked well, in relation to autistic people accessing the justice system
| Rank | What is working well, or has worked well, in relation to autistic people accessing the justice system and sample quotes from responses | Direct insight | % who stated this as a problem |
|---|---|---|---|
| All respondents N = 56 |
|||
| 1 | Nothing is working well/has worked well | “Nothing is working because normally if you get too emotional you are put on a Psych hold and therefore are demeaned and ignored over your true innocence.” (ID 793) “Nothing from what I hear. Jailing a 19 year old autistic boy for 9 months is NOT the solution to him having aggression.” (ID 860) |
45% |
| 2 | When there is autism-specific knowledge awareness, and understanding of professionals in the justice system gained via training and first-hand knowledge and experience (e.g., when front line workers understand autistic behaviours; when court social workers are aware of barriers autistic people face) |
“I’ve found police officers who have autistic children/family are able to identify early and be supportive rather than authoritarian.” (ID 381) “Most police in the field we have come across are very understanding and knowledgeable.” (ID 587) |
23% |
| 3 | When there is access to support people/advocacy (e.g., the use of intermediaries for witnesses; access to disability advocates) |
“Autistic people can generally have support persons present with police interviews and when giving evidence.” (ID 866) “Court [liaison] officers who understand autism are gold.” (ID 1167) |
20% |
| 4 | When there is access to other supports within the justice system (e.g., links between the justice system and the NDIS; support animals/therapy animals in court) |
“[When] paperwork is helped with.” (ID 858) “Separate listings in court to the regular listings (for example the ARC [Assessment and Referral Court] List in the Magistrate’s Court in Victoria).” (ID 1365) |
16% |
| Rank | What is working well, or has worked well, in relation to autistic people accessing the justice system and sample quotes from responses | Direct insight | % who stated this as a problem |
|---|---|---|---|
| All respondents N = 56 |
|||
| 5 | “Don’t know” | “I don’t know but minorities are at a disadvantage.” (ID 196) “Don’t know, sorry.” (ID 1269) |
11% |
Note. *all other groups that have not been identified separately
3.6.2 Umbrella review
An umbrella review is a form of research that brings together the findings of all existing reviews (systematic and scoping) that report on a specific topic. This umbrella review aimed to identify the systematic reviews relating to any aspect of the justice system for autistic individuals. This included legal, policing, judicial, and custodial services, with the autistic person being a victim, witness, or offender. The terms used for the searches and the number of articles identified, screened, and included are provided in Appendix I-2 and Appendix I-3. The final umbrella review consisted of 20 articles, none of which were written by Australian authors. Over half (k = 12) of the reviews were written in the last five years. The 20 reviews collectively report on 272 individual studies.
The information and findings from the included reviews are summarised in the subsections below. When reporting on the number of people or participants in the review, this will be represented as n = [number of participants]. When reporting on the number of reviews that considered a topic, this will be represented as k = [number of reviews].
3.6.2.1 Participants within included reviews
In total, the reviews included 705,833 participants, with sample size for individual studies ranging from 9 to 633,051 (M = 32,791.90; SD = 141,577.95). Of these 30,693 (4.35%) were reported to be autistic.
Only six systematic reviews provided information on the gender of autistic participants. The majority of the autistic participants in these six reviews were male (average percentage = 89.81%). Autistic participants, or the case studies reported, ranged in age from 5 to 74 years.
3.6.2.2 Quality of included reviews
The quality of the included systematic reviews was assessed using the JBI Critical Appraisal Tool for Systematic Reviews. This tool assesses the methodological quality of a systematic review. The maximum score is 33, which indicates a very high-quality systematic review. The average quality score for the 20 included systematic reviews was 25.15 (76.21%), with the quality score ranging from 17 to 32.
3.6.2.3 Topics of included reviews
The 20 reviews identified in the area of the justice system covered nine topics; some reviews discussed multiple topics. These were the prevalence and factors/characteristics associated with contact with the justice system (generic k = 4 reviews; as offenders of specific offences k = 12 reviews); autistic and autism community’s experiences with, and perceptions of, the police (k = 2); professionals working in justice system: autism training, knowledge, and experience (k = 5); interviewing autistic individuals (k = 2); court experiences and outcomes (k = 2); custody and confinement experiences (k = 3); treatments for specific offence types (k = 3); and victimisation (k = 4). The key findings for each topic are presented in Table 39.
3.6.2.4 Research gaps
After reading the 20 reviews, the research team identified a number of key research gaps. These are combined with relevant research gaps noted within the reviews and summarised into Table 39.
Overall, there is a dearth of research which considers autistic people’s experiences of interacting with the justice system as a victim or witness. Such work is critical given that victims and witnesses have to experience many of the same justice system processes or environments as offenders (e.g., being interviewed, the courtroom). There is also a need for research to identify ways to make those environments more inclusive and supportive for autistic people.
Almost all of the research on autistic offenders is based on case studies and the significant majority of those case studies are male, meaning that little is known about non-male autistic offenders. Many of the studies, including intervention studies, use approaches designed for non-autistic people, meaning that little is known about autism-specific pathways into or out of crime, or factors which may put autistic people at increased likelihood of specific crimes.
There was a consistent finding that members of the justice system lack of knowledge of autism, how autistic people may present in justice settings, and ways to support autistic people in justice settings. This highlights the need for research to address this issue through co-developed and co-delivered training, the impact of which should be assessed through subjective and objective methods.
Table 39: Umbrella review findings for justice
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Prevalence and factors/characteristics associated with contact with justice system | k = 4 Collins et al. (2022) Cooper et al. (2022) King & Murphy (2014) Railey et al. (2021) |
• Prevalence of autism in unbiased samples of offenders is 3%, slightly higher than that reported in adult community samples. However, some studies with a non-autistic control group suggest no difference in offending rate between autistic individuals and non-autistic individuals. None of these studies used Australian data. • A late diagnosis of autism, co-occurring intellectual disabilities and mental health challenges, conduct problems, and a history of family/childhood adversity are associated with an increased likelihood of offending in autistic individuals • Substance use and personality disorder, whilst lower in autistic offenders than in non-autistic offenders, are still associated with an increased risk of offending. |
• Autistic people’s perspectives on the pathways that led them into offending or being close to offending • High-quality, unbiased studies (with a well-matched control group) to provide an accurate prevalence rate of autism amongst offenders. Once this unbiased sample is identified, risk factors (including autism-related factors, environmental factors, and the role of mental health) for offending can be evaluated. • Prevalence and risk factor for offending across the lifespan • Studies which report on other genders, a broader ethnicity group, and those with varying cognitive ability levels are needed as almost all studies in autistic offenders are based on autistic white males without an intellectual disability • The factors that put autistic individuals at increased risk of being a victim of an offence, and therefore coming into contact with the justice system for a different reason. |
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Prevalence and factors/characteristics associated with specific offence types | k = 11 Allely et al. (2014) Allely (2018) Allely & Creaby-Attwood (2015) Allely & Dubin (2018) Bjorkly (2009) Cooper et al. (2022) Im (2015) King & Murphy (2014) Mercer & Allely (2020) Rutten et al. (2017) Schnitzer et al. (2020) |
• Autistic people may be more likely than non-autistic people to commit offences against people, and less likely to commit offences against property or driving or drug offences. Some small empirical studies suggest there may be an elevated risk of arson but this requires further evaluation. • Many of the reviews relied heavily on case study reports. There were few empirical studies, and few with unbiased samples • Autism-related factors, such as social misunderstandings, differences with perspective taking, and special/deep interests are frequently identified as motivations for multiple offence types (sex offending, arson, stalking). Sensory elements are also discussed in relation to violence • If the contributing factors leading to offending differ for autistic people, then risk assessment tools designed for non-autistic people may not be accurate and treatments designed for non-autistic people may not be effective |
• Autistic people’s perspectives on the pathways that led them into a specific offence type • High-quality, unbiased studies (with a well-matched control group) to provide an accurate prevalence rate of autism amongst offenders convicted of specific offence types. Once this unbiased sample is identified, risk factors (including autism-related factors, environmental factors, and the role of mental health) for each offence type can be evaluated. Identifying prevalence and risk factors across the lifespan will help to identify stable and dynamic risk factors and avenues for early support or prevention • Development of reliable measures and tools. This includes measures of specific crime types as well as the factors (general and autism-specific) which may lead or, or contribute to, offending or re-offending |
| Autistic and autism community experiences with, and perceptions of, the police | k = 2 Cooper et al. (2022) Railey et al. (2021) |
• American and Canadian studies suggest that approximately 1 in 5 autistic people (16-20%) will have had contact with the police within the last 12-18 months. Australia-specific data are not reported. • A series of studies, including an Australian study, indicate that almost two-thirds of the autistic or autism community who have contact with the justice system are “dissatisfied” with their experience • Negative experiences are generally related to unmet needs and a lack of knowledge and awareness of autism amongst the police. These negative experiences lead to distrust and fear, and a reluctance to go to the police in the future. • Parents of autistic children generally report that their autistic child’s experience with the police was satisfactory, with some suggesting the police provided a calming effect. |
• Australia-specific data of how often autistic people interact with the police or other members of the justice system officials and their experiences of these interactions. These interactions may be when they are victims, witnesses, or offenders. • Australia-specific data on how often an autistic person may have wanted to interact with the police (or other members of the justice system) and not done so • Autistic people (and their supporters’) perspectives on how to make different parts of the justice system more autism inclusive. This includes procedures and physical spaces such as police stations, interview rooms, cells, court rooms and prisons. • Whether knowledge of autism within the justice system impacts the autistic person’s experience or perception of the interaction. |
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Professionals working in justice system: autism training, knowledge, and experience | k = 5 Cooper et al. (2022) Railey et al. (2020) Railey et al. (2021) Schnitzer et al. (2020) Sreckovic et al. (2022) |
• Professionals within the justice system may have incorrect beliefs about autism, which may come from media coverage rather than from professional training. Professionals within the justice system who have a personal connection to autism have higher and more accurate knowledge of autism than those without a personal connection. • The majority of professionals within the justice system cannot identify the key characteristics of autism and do not feel equipped to work with autistic people. Most identify a need for training on autism. • Studies evaluating autism-specific training with American and Irish police used a range of methods, from a 13-minute video to multiple interactive sessions with live feedback, coaching, and debriefing. Less than half were co-developed and/or co-delivered with autistic people. No Australian studies on training were identified in the reviews. All the training resulted in increased autism knowledge and confidence. Whilst improving knowledge is positive, there is a need to ensure that this leads to action, as even professionals within the justice system who feel able to recognise the characteristics of autism report difficulty in knowing how best to support autistic individuals when accessing the justice system. • Staff training on autism should be a prerequisite to delivering treatments to reduce reoffending. |
• Document current autism knowledge and training for professionals working within the Australian justice system • International comparisons of autism knowledge and training amongst professionals within the justice system; Love et al.’s (2023) Global Criminal Justice Survey enables this to occur • Co-development of autism-specific training for all professionals in the justice system, evaluated by objective methods (e.g., role-play, video observations) both immediately and 6 months post training. With the ongoing expansion of knowledge in this area, this training may need to be refreshed (e.g., every 2 years). • Co-development of training for professionals in the justice system which addresses intersectionality redacted autistic people (e.g., race, co-occurring conditions). |
| Interviewing autistic individuals (as witnesses, victims, or offenders) | k = 2 Cooper et al. (2022) Railey et al. (2021) |
• Standard interviewing processes (using open-ended, non-leading questions) are ineffective for many autistic individuals • Adjustments, such as narrowing parameters in a non-leading manner and the use of intermediaries, can help improve the amount of information shared during interviews • Autistic children and adults are no more suggestable than non-autistic people. |
• Training required for, and the efficacy of, intermediaries for autistic people • Given the increased risk of being a victim to specific crimes (noted above) – development of effective and acceptable interviewing practices for autistic people, evaluated by an independent research team |
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Court experiences and outcomes | k = 2 Allely & Cooper (2017) Cooper et al. (2022) |
• Autistic people report court experiences as “overwhelmingly negative” and, compared to matched controls, had more difficulty in understanding the processes and proceedings. Few accommodations made for communication or sensory needs • Informing judges and jurors that the person providing evidence is autistic improves their perception of the autistic individual and their credibility • Informing judges that a defendant is autistic influences their decision-making and sentencing, with therapy and supports being seen as more appropriate than prison for autistic offenders |
• Autistic people (and their supporters’) perspectives on what court supports are needed • Evaluation of the impact of reasonable court/trial modifications on autistic people’s understanding of, and engagement with, court experiences • Co-development of processes for disclosing an autism diagnosis and methods to effectively explain this to jurors • Juror/judge perceptions of live, interactive testimonies from autistic people (previous studies have relied on video testimonies). This can be conducted in conjunction with evaluating the impact of training on autism or a person’s disclosure of their autism diagnosis on judge/juror perceptions |
| Custody and confinement experiences | k = 3 Allely (2018b) Cooper et al. (2022) Railey et al. (2021) |
• Prevalence of autistic individuals in confinement varies widely (2-17%) based on methodology • Confinement is accompanied by sensory and communication challenges for autistic individuals. These challenges are further exacerbated by the anxiety caused by the uncertainty and unpredictability of such settings • Relatively dated studies suggest a prevalence rate of autism of 2.4% within secure psychiatric hospitals in the UK, which was approximately three times higher than the rate in the community at the time those data were published • Legal terminology and jargon make the explanations of an individual’s rights and entitlements “inaccessible” for many autistic individuals • The structure and routines of prison are appreciated by some autistic offenders. However, the majority of autistic offenders report challenges with the prison environment, and high levels of victimisation from other inmates. This leads to increased self-harm and to attempts to self-isolate |
• Accurate prevalence of Australian autistic children, adolescents, and adults currently in confinement (e.g., prison, juvenile detention centre, or forensic hospital) and support provided to prevent negative outcomes during such time • Development and evaluation of accessible ways to explain rights and entitlements for autistic individuals and ways to assess that such information has been understood • The experiences of autistic people after release from prison; their access to mental and physical healthcare and supports to facilitate a safe and effective transition back into the community |
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Treatments for specific offence types | k = 3 Cooper et al. (2022) Melvin et al. (2017) Schnitzer et al. (2020) |
• Research to date is predominantly reporting on case studies or case series. The main focus has been on treatment for sex offending. • Whilst some treatment programs designed to reduce reoffending in non-autistic offenders are reported to offer social benefits for autistic offenders, they do not have sufficient quantitative evidence for reducing reoffending. Some qualitative reports exist on improvements • A lack of suitable treatments for autistic offenders • Adaptations made to therapy included simplification of concepts, making concepts more concrete, visual aids, social stories, and additional repetition of techniques and homework |
• Development and high-quality evaluation of autism-specific treatments for specific offences, with long-term, objective data collection • The experiences of autistic people who have received treatment for their offences and how, if at all, it has supported them to prevent reoffending behaviour |
| Victimisation | k = 4 Collins et al. (2022) Cooper et al. (2022) Hellstrom (2019) Trundle et al. (2022) |
• International data indicate that autistic people (predominantly children) are more likely to be victims of specific crimes, including sexual victimisation, abuse, assault, and robbery • A meta-analysis on victimisation (predominantly based on child data) estimates prevalence of 16% for child abuse and 40% for sexual victimisation. Only one Australian study contributed data to these prevalence rates. • A history of victimisation is one the most robust predictors of later offending in autistic individuals |
• Prevalence of different forms of victimisation, revictimisation, and polyvictimisation in Australian autistic children and adults • Reporting rates of victimisation, support received, and perceived effectiveness of the support • The impact of victimisation in autistic people on mental health and well-being |
Policy and guideline review
To capture a broad range of policies and guidelines at a national and/or state/territory-based level, a series of internet searches were conducted (see Appendix I-5 for more information). The policies and guidelines identified covered a range of sectors relevant to the justice system, including Australian Federal Police, Law Council of Australia, Australian Human Rights Commission, state/territory-level Attorney General, and Queensland Police Service. Information within the identified policies relevant to autistic individuals or people with disability is summarised in Table 40.
These policies and guidelines were all published or updated between 2000 and 2023, with 87% (k = 26) published or updated in the last 5 years (2018 to 2023). All 30 included policies provided some information relevant to individuals with disabilities; only five (17%) provided informed directly relevant to autistic individuals. The policies summarised in Table 40 were distributed across national and state/territory level: eight from a national level, three from Australian Capital Territory, three from New South Wales, three from Northern Territory, three from Queensland, five from South Australia, two from Tasmania, three from Victoria, and 0 from Western Australia. While additional policies were considered during this review (including those from Western Australia), only those that provided (a) information relevant to either autistic people or people with disability, or (b) additional unique information over and above that already summarised in Table 40, were included.
Where policies could not be found, it may indicate that autism-related policies or guidelines are not available for that sector of the profession, that they are accessible only for individuals working within the profession, or that they are difficult to access. The latter suggests that people working in, or interested in, this sector or profession may have difficulty accessing information that may assist in supporting autistic people.
3.6.2.5 Policy and guideline relevant to autistic people
The five documents that specifically discussed information pertinent to autistic individuals highlighted that within the justice system:
- There are differing definitions of cognitive impairment, yet within the documents, cognitive impairment is often written about as if it is similar to autism. Sometimes autism is conflated with cognitive impairment, potentially and incorrectly implying that all autistic individuals experience cognitive impairment.
- Autism diagnosis should be considered when interpreting behaviour in court.
- The physical environment (e.g., lights, sounds) should be considered to support accessibility. This relates to the sensory differences experienced by autistic people.
- A specialist court process (Assessment and Referral Court List) has been developed in Victoria to address the underlying factors that may have contributed to offending.
3.6.2.6 Policy and guideline relevant to people with disability
The 30 polices and/or guidelines that provided information pertinent to individuals with disabilities revealed that, within the justice system:
- Accessibility needs to be considered throughout the justice system to overcome barriers within the system. This includes: – Communication methods being tailored to support the needs of people with disabilities, including Easy English options (e.g., simple words and pictures). This is relevant throughout the justice system, including during the moment of arrest and within the court system – Creating a physical environment that is responsive to the needs of people with disability – Modifications being made where reasonable to support the participation of people with disability in the justice system. This aligns with policies stating that people with disability should not experience discrimination based on the grounds of disability and should be treated with dignity during the justice process.
- A person’s cognitive impairment or disability should be considered when: – Making decisions regarding the fitness of a person to stand trial or be a witness. Where possible, accommodations should be made to support the individual (e.g., providing evidence in a closed court; having an advocate stand in their place; having a support person) – Determining a sentence for an offence – Identifying whether special care and treatment is required within or outside of the facility.
- People with disability are overrepresented in the criminal justice system in Australia. Reforms are required to support better access to legal systems for this population. Additionally, the underlying factors that may be associated with this overrepresentation need to be considered. These factors include higher rates of poverty and unemployment and lower educational outcomes for this population
- Individuals with disabilities should be consulted in discussions about the law, with ongoing input into its the design, implementation, and evaluation
- Inclusive practice should be implemented, including when considering the setting in which people with disability are detained. This should also be recovery oriented, acknowledging individual differences in the meaning of recovery or rehabilitation.
Table 40: Policy and guideline review findings for justice
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National | Australian Federal Police | Australian Federal Police Act 1979 | 2021 | × | ✓ | • Where a protective service officer who arrests a person for an offence believes or has reasonable grounds for believing that the person is unable, by reason of inadequate knowledge of the English language or any physical or mental disability, to understand the substance of the offence for which the person is arrested, the protective service officer must, as soon as practicable, take all reasonable steps to ensure that the person is provided with an explanation of the substance of the offence that the person is able to understand. |
| National | Australian Law Reform Commission | How we Talk with People with Disability | n/a | × | ✓ | • Communicate in Easy English (i.e., simple words and pictures) • Include people with disabilities in discussions regarding law. |
| National | Attorney-General Department | Criminal Code Act 1995 | 2022 | × | ✓ | • If the police officer who is detaining a person under a preventative detention order has reasonable grounds to believe that the person is unable, because of inadequate knowledge of the English language or a disability, to communicate with reasonable fluency in that language: – The police officer has an obligation under subsection 105.31(3) to arrange for the assistance of an interpreter in informing the person about: (1) the effect of the order or any extension, or further extension, of the order; and (2) the person’s rights in relation to the order – The police officer has an obligation under subsection 105.37(3A) to give the person reasonable assistance to: (1) choose a lawyer to act for the person in relation to the order; and (2) contact the lawyer. |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National | Law, Crime and Community Safety Council | National Statement of Principles Relating to Persons Unfit to Plead or Not Guilty by Reason of Cognitive or Mental Health Impairment | 2015 | × | ✓ | • Policies, procedures and services should aim to recognise and reflect the distinction and interaction between the concepts of cognitive impairment and mental health impairment • The concepts of cognitive impairment and mental health impairment should be defined broadly, focusing in general on the effect of the impairment rather than on the inclusion or exclusion of particular conditions • Decision making should be guided by the least restriction of the rights of a person with cognitive or mental health impairment taking into account the risk of harm they may pose to themselves, victims or others • The setting in which people are detained should aim to be inclusive and recovery-orientated, acknowledging that there will be individual differences in the meaning of recovery or habilitation and what it may entail • Information about the rights of persons detained under orders and how they may be exercised should be readily available to relevant persons and their families, guardians and carers in a format and mode by which this information may be understood • People who are detained following an order are entitled to receive health care (including mental health care) and support at an equivalent level to that available to people in the community • Duty of care should be a primary consideration when treating young people with cognitive or mental health impairment. Young people should be provided with care, protection and all necessary individual assistance in view of their age, sex and personality and, if detained, young people should be separated from adults. |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National | Law Council of Australia: Department of Social Services | National Disability Strategy | 2020 | × | ✓ | • Reflect Australia’s obligations under the Convention on the Rights of Persons with Disabilities (CRPD) in protecting, promoting and fulfilling the human rights of people with disability • In terms of rights protection, justice and legislation, there are strong examples of initiatives to support people with disability to participate in the justice system on an equal basis with others. Where they have not already done so, Commonwealth, state and territory governments should implement Disability Justice Plans to champion cultural change and practical improvements across the justice system • Within the criminal justice system, people with disability face worryingly disproportionate outcomes, as well as many systemic and structural barriers to accessing justice. Legislative reforms, better access to legal assistance services, as well as preventative and rehabilitative critical support services to address the underlying factors which cause many people with disability to become embroiled in the system in the first place, are all needed to overcome these barriers • Solutions include a review of current laws concerning unfitness to plead, as well as evidence laws to allow and prompt a more flexible approach to adducing evidence from witnesses with complex communication needs, the expansion of communication intermediary schemes, the adoption of a National Justice Interpreter Scheme and targeted measures to train all parts of the criminal justice sector – including the police, judiciary, legal practitioners and corrections - on better identifying and responding to the needs of people with disability • Enhance the accessibility of Australia’s anti-discrimination framework, a shift towards formal recognition of supported decision-making, nationally consistent laws dealing with individual decision-makers, and removing barriers that prevent people with disability from participating in jury service • Provide support for a strong disability-inclusive research agenda. The Law Council is concerned by the dearth of good data and research that is needed to improve mainstream programs and policies which affect people with disability • Involve and engage people with disability during consultations. It is fundamental that people with lived experience of disability are involved on an ongoing basis with its design, implementation and evaluation. Intersectional perspectives are critical in this regard. |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National | Australian Government: Australian Institute of Health and Welfare | People with Disability in Australia | 2020 | × | ✓ | • This is a large and detailed document, so the critical parts have been summarised as: people with disability may experience higher rates of violence, abuse and neglect than people without disability. Some may also face barriers in asserting their rights before the law. Exploring the extent of violence experienced or perpetrated by people with disability, as well as their interactions with the justice system and the quality and safety of the supports they receive, can provide information to improve outcomes for this vulnerable group. |
| National | Australian Human Rights Commission | Equal Before the Law: Towards disability justice strategies | 2014 | × | ✓ | • Disability Justice Strategy should focus on: (1) Safety of people with disabilities and freedom from violence, (2) Effective access to justice for people with disabilities, (3) Non-discrimination, (4) Respect for inherent dignity and individual autonomy including the freedom to make one’s own decisions, (5) Full and effective participation and inclusion in the community • These outcomes reflect the understanding that people with disabilities: (1) Have the right to be heard and informed, (2) Should feel safe and be free from violence so that they can live in safety and with dignity, (3) Should be able to access the support, services, and programs they need to prevent disadvantage and address a range of health and social risk factors, (4) are able to easily identify and access appropriate high quality services if they experience violence, or feel they are unsafe and at risk of experiencing violence, (5) are treated with dignity when they begin or defend criminal matters, or participate in criminal justice processes, and the legal system provides the modifications, supports and aids needed to participate, (6) when lawfully deprived of their liberty are treated humanely and provided with supports, adjustments and aids needed to participate in prison life and transition successfully to the community • Factors included appropriate communication, early intervention and diversion, increased service capacity, effective training, enhanced accountability and monitoring, and better policy and frameworks are also considered. |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National | Commonwealth of Australia: Department of Social Services | Australia’s Disability Strategy 2021-2031 | 2021 | × | ✓ | • Effective access to justice for people with disability requires consideration of individual needs. Without this there can be no equitable or equal participation. This requires appropriate strategies, including aids, equipment, and accessible legal information and advice to facilitate equal and effective participation in all legal proceedings. In addition, greater awareness of disability is needed among some parts of the judiciary, legal professionals and court staff • People with disability who have complex needs, multiple impairments and/or multiple and intersecting forms of disadvantage, face even greater obstacles within the justice system compared to other people with disability and people without disability. People with disability in the criminal justice system are at a heightened risk of violence, abuse, neglect and exploitation. Reducing the over-representation of people with disability across the criminal justice systems of Australia and other systems of detention requires appropriate strategies, including adoption of diversionary approaches and transition to community supports. |
| State | New South Wales Parliamentary Council | Crimes (Administration of Sentences) Regulation 2014 | 2022 | × | ✓ | • In the case of an inmate who has a disability, a strategy to minimise any disadvantage suffered by the inmate because of the disability, including in relation to the inmate’s suitability to carry out work. |
| State | New South Wales Attorney General | Evidence Act 1995 No 25 | 2022 | × | ✓ | • Without limiting the matters that the court may take into account in deciding whether to disallow the question or give such a direction, it is to take into account the extent to which the witness’s age, or any mental, intellectual or physical disability to which the witness is subject, may affect the witness’s answers. |
| State | New South Wales Attorney General | Crimes Act 1900 No 40 | 2023 | ✓ | ✓ | • A cognitive impairment may arise from any of the following conditions but may also arise for other reasons: (a) intellectual disability, (f) autism. |
| Territory | Australian Capital Territory | Juries Act 1967 | 2018 | × | ✓ | • If a juror has a mental or physical disability that may impact their ability to properly discharge the duties of a juror, the judge must consider if support that would enable the person to properly discharge the duties of a juror can reasonably be given. If satisfied, the judge must make a direction that the support be given. |
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| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| Territory | Australian Capital Territory, Attorney General | Evidence (miscellaneous provisions) act 1991 | 2022 | × | ✓ | • A witness with a disability may have a support person and given evidence in closed court. |
| Territory | Australian Capital Territory, Law Council of Australia | The Criminal Justice System – Issues Paper: Royal commission into violence, abuse, neglect and exploitation of people with disability | 2020 | ✓ | ✓ | • This document contains a lot of relevant information. The most pertinent of which is summarised as: • Physical accessibility includes making a building physically accessible for people with impaired mobility as well as creating a physical environment that is responsive to the needs of people with disability generally. For example, fluorescent lighting or extraneous noise can be distracting for people with mental health conditions, and bright colours can affect the mood and behaviour of people on the autism spectrum. The formal design and structure of the courtroom can influence people’s experience of justice • The Assessment and Referral Court List (ARC) is a specialist court list within the Melbourne Magistrates’ Court that is designed to meet the needs of accused persons who have or are likely to have a mental health condition, cognitive impairment, intellectual disability, ABI, autism and/or neurological impairment, including dementia. The ARC aims to address the underlying causes of offending behaviour in order to reduce the likelihood of reoffending and decrease the number of prisoners with mental impairment. It also aims to ‘increase public confidence in the criminal justice system by improving court processes and increasing options available to courts in responding to accused persons with a mental impairment’ • People with disability are over-represented across the criminal justice system in Australia. While not in themselves ‘causes’ of violence, abuse, neglect or exploitation of people with disability in the criminal justice system, important ‘enablers’ include higher rates of poverty and unemployment and lower educational outcomes, often stemming from systemic discrimination • A lack of disability awareness also means that there is insufficient broader policy planning and resourcing to ensure that the diverse needs of people with disability are anticipated and met within the criminal justice system, as evidenced, for example through a lack of disability-responsive rehabilitative prison services |
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| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| Territory | Northern Territory | Juries Act 1962 | 2022 | × | ✓ | • Many people with disability who are offenders have a long history of undiagnosed or untreated impairment, poor health and/or trauma, with their behaviour misinterpreted as difficult or defiant. This leads to disproportionate interactions with police and ultimately, a ‘criminalisation of disability’ • Within the justice system, people with disability face many systemic and structural barriers to accessing justice. These include inaccessible information, formats and processes, physical inaccessibility, poor communication, inflexible court procedures, and an under-resourced legal assistance sector. Without efforts to overcome these barriers, the system will remain largely inaccessible for many people with disability and continue to produce unjust outcomes • The over-incarceration of First Nations persons with disability, including very high proportions of First Nations children and young people, is under-explored. Commonwealth, state and territory governments should implement Disability Justice Plans to champion cultural change and practical improvements across the criminal justice system. • A person with a disability who, as a result of that disability, is incapable of discharging the duties of a juror is exempt from service as a juror. |
| Territory | Northern Territory | Child Protection (Offender Reporting and Registration) Act 2004 | 2023 | × | ✓ | • A court, in determining whether a person had a reasonable excuse for failing to comply with his or her reporting obligations, must have regard to the following matter: whether a person has a disability that affects his or her ability to understand or comply with those obligations • If a reportable offender attending in person is a child or has a disability that makes it impracticable for him or her to make a report, a parent, guardian, carer or other person nominated by the reportable offender who is accompanying the reportable offender may make the report on the reportable offender’s behalf. |
| Territory | Northern Territory | Evidence Act 1939 | 2020 | × | ✓ | • A vulnerable witness means a witness in proceedings: (a) who is a child; or (b) who has a cognitive impairment or an intellectual disability. The defendant is not entitled to cross-examine the witness directly unless the court grants leave. • The court cannot grant leave under subsection (2), if the witness is a child, or has a cognitive impairment or an intellectual disability. |
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| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | Queensland Attorney General | Inspector of Detention Services Act 2022 | 2022 | × | ✓ | • For a review relating to a detainee with a disability, it may be appropriate for the inspector to consult with a: (a) parent, legal guardian or close friend of the detainee; or (b) a representative from an advocacy services agency. |
| State | Queensland Police Service | Police Powers and Responsibilities Act 2000 | 2023 | × | ✓ | • When determining whether a missing person is high risk, any disability of the person attributable to a cognitive, intellectual, neurological, physical or psychiatric impairment should be considered • An interpreter can be sought if a police officer reasonably suspects a relevant person is unable, because of an inadequate knowledge of the English language or a physical disability, to speak with reasonable fluency in English. |
| State | Queensland Children, Youth Justice, and Multicultural Affairs | Youth Justice Act 1992 | 2023 | × | ✓ | • For a child with a disability—the disability and the child’s need for services and supports in relation to the disability should be considered in making decisions about release and bail. |
| State | South Australia Attorney General | Criminal Procedure Act 1921 | 2023 | ✓ | ✓ | • Cognitive impairment includes a developmental disability (for example, intellectual disability, Down Syndrome, cerebral palsy, or an autism). |
| State | South Australia Attorney General | Summary Offences Act 1953 | 2023 | ✓ | ✓ | • When a person is disrespectful in court, it must be considered if the person has a cognitive impairment (including autism and intellectual disability). |
| State | South Australia Attorney General | Sentencing Act 2017 | 2022 | ✓ | ✓ | • In determining a sentence for an offence, a court must take into account the personal circumstances and vulnerability of any victim of the offence, including disability • Court to be notified if suitable community placement not available due to defendant’s physical or mental disability • Cognitive impairment includes autism. |
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| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | South Australia Police, Emergency Services and Correctional Services | Correctional Services Act 1982 | 2022 | × | ✓ | • Facilities and programs developed for the care, rehabilitation, imprisonment, training, therapeutic treatment or other treatment of prisoners, probationers and parolees should (1) be evidence-based; and (2) be individually designed as much as reasonably practicable— to take account of the prisoner, probationer or parolee’s age, gender, gender identity, sexuality or sexual identity, cultural identity, developmental and cognitive capacity, ability or disability, and any special needs. |
| State | South Australia Police, Emergency Services and Correctional Services | International Transfer of Prisoners (South Australia) Act 1998 | 2000 | × | ✓ | • Mental impairment includes senility, intellectual disability, mental illness, brain damage and severe personality disorder. Mentally impaired prisoner means: (a) a person serving a sentence of imprisonment on the acquittal of the person for an offence on the ground of mental impairment; or (b) a person serving a sentence of imprisonment because the person has been found mentally unfit to stand trial. |
| State | Tasmania Chief Parliamentary Counsel | Corrections Act 1997 | 2021 | × | ✓ | • Every prisoner and detainee has the following rights: if the prisoner has an intellectually disability or mentally health challenge, the right to have reasonable access within the prison or, with the Director’s approval, outside the prison to such special care and treatment as a medical officer considers necessary or desirable in the circumstances. The Director may direct that a prisoner or detainee who has a disability be removed from a prison, or a hospital or institution to which he or she has been removed under section 36, to a secure mental health unit. |
| State | Tasmania Chief Parliamentary Counsel | Anti-Discrimination Act 1998 | 2021 | × | ✓ | • A person must not discriminate against another person on the ground of disability. |
| State | Victoria Chief Parliamentary Counsel | Sex Offenders Registration Act 2004 | 2022 | × | ✓ | • If a registrable offender attending in person has a disability that renders it impossible or impracticable for him or her to make a report, any parent, guardian, carer or other person nominated by the registrable offender who is accompanying the registrable offender— may make the report on the registrable offender’s behalf. |
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| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | Victoria Chief Parliamentary Counsel | Corrections Regulations 2019 | 2019 | × | ✓ | • In determining the placement of a prisoner, varying the placement of a prisoner or developing a sentence plan for a prisoner, a sentence management panel or the Secretary may consider whether the prisoner has any physical limitations or a disability. |
| State | Victoria Chief Parliamentary Counsel | Serious Offenders Act 2018 | 2018 | × | ✓ | • If the offender has an intellectual disability or mental health problem, the right to have reasonable access within the facility or, with the approval of the Commissioner, outside the facility to any special care and treatment that is necessary or desirable in the circumstances. |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 250 What we found – Justice
3.6.3 Community views, research evidence, and policy/guideline alignment and gap analysis
As well as the research gaps identified as part of the research landscape mapping, the gap analysis (see Figure 7 for process) allows comparison of the current state (predominantly based upon the community views analysis but also some findings of the umbrella review and policy review) to an improved future state (based upon community views around what is working well, policy review, and some umbrella review findings).
Figure 7: Gap analysis: Current to improved future state
The gap analysis work for the justice system section highlighted the elements that need to be addressed in order to reduce the problems experienced by autistic people in relation to the justice system:
3.6.3.1 There is a need to improve the level of autism knowledge and understanding of professionals working in the justice system
Current state
The community views survey highlighted the level of autism knowledge, awareness, and understanding of professionals in the justice system as the most common problem experienced by autistic people within the justice system. It also highlighted that there are problems with the
Research evidence, policy and landscape mapping to inform the National Autism Strategy 251 What we found – Justice
characteristics of autism and/or autistic behaviour (e.g., meltdowns or differences in eye contact) being misinterpreted or treated as a criminal issue.
The research landscape mapping results align with the community views. The research landscape mapping highlighted that although autistic people are more likely than non-autistic people to come into contact with the justice system, there is a consistent lack of knowledge of autism amongst professionals within the justice system. While the systematic reviews included in the research landscape mapping described some evaluations of autism-specific training for police, none of these took place in Australia. Moreover, there were no studies of training of broader professionals (e.g., lawyers, judges, prison staff) within the justice system within the reviews to date.
Improved future state
The community views survey highlighted that the justice system works well for autistic people when there is autism-specific knowledge, awareness, and understanding of professionals in the justice system gained via training and first-hand knowledge and experience. Aligning with this, the most frequently suggested solution to the problems autistic people face within the justice system (within the community views survey) was increasing the autism knowledge of professionals within the justice system.
The Australian Human Rights Commission (2014) and the Commonwealth’s “Australia’s Disability Strategy” (2021) document in the policy review identify the need for effective training on disability for justice system professionals. However, none of the other policies reviewed suggested or mandated autism training for professionals in the justice system.
Steps that can be taken to move from the current to the improved future state include:
- Co-development (i.e., developed collaboratively with autistic people) and co-delivery (i.e., delivered collaboratively with autistic people) of evidence-based autism-specific training that is relevant and accessible to professionals in every aspect of the justice system. The effectiveness of this training could be supported by relevant federal and state policymakers suggesting or mandating completion of such training within policy.
- Co-development and co-delivery of specialised training for professionals whose role would benefit from specific knowledge of autism (e.g., police officers working directly with general public; prison officers supporting autistic inmates).
3.6.3.2 There is a need to find a way to identify autism and co-occurring conditions in autistic people accessing the justice system
Current state
The community views survey highlighted that undiagnosed autism and/or undiagnosed co-occurring conditions is an issue that autistic people face in relation to the justice system. A lack of access to diagnosis was highlighted as a cause of the problems faced by autistic people in relation to the justice system (i.e., lack of a pathway to receiving a diagnosis). Identifying that a person is autistic or that they have a co-occurring condition would also help to reduce another issue raised in the community views survey; that is, the characteristics of autism and/or autistic behaviour can be misinterpreted or treated as a criminal issue.
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The research landscape mapping showed that professionals in the justice system cannot identify the key characteristics of autism. Importantly, however, it also showed that if judges and jurors are informed that a person is autistic, it improves the judge/juror perception of the autistic person which influences their decision-making towards therapy and supports. Given that professionals in the justice system may experience challenges in identifying autism characteristics, it is likely that for some (potentially undiagnosed) autistic people in court, autism is not recognised and therefore not considered when interpreting their behaviour.
Improved future state
The community views highlighted that one way to reduce the issues that autistic people face with the justice system is to incorporate ways to identify that a person is autistic, with some specific recommendations for diagnostic services and others recommending ID cards. Multiple policies specify specific rights for individuals with a disability (which, in terms of policy, would include autism), which relies on a diagnosis to have been previously made and disclosed.
Steps that can be taken to move from the current to the improved future state include:
- Collaboration between justice and health systems to provide pathways to autism assessments and diagnosis, ensuring equitable access to the justice system
- Co-development of clear pathways for autistic people to disclose their diagnosis of autism, taking into consideration potential fears of stigmatisation and discrimination based upon diagnosis. Some community recommendations included autism identification cards which are used by some police services in other countries (npaa.org.uk/alert-card-schemes/)
- Gain community and justice system professional views on consistent screening for a range of neurodivergent conditions for those entering the justice system. This would not be with the aim of diagnosing, but with the aim of: (a) identifying those who may benefit from referral on for diagnosis, and (b) identifying those who may benefit from supports or accommodations (discussed below).
3.6.3.3 There is a need to make justice systems settings more accessible and inclusive for autistic people
Current state
The community views survey identified that the sensory and physical settings of justice systems are a significant problem for autistic people trying to access the justice system. The community views survey highlighted that this can result in autistic people being unable to think, process information, or communicate within these settings. This was also highlighted within the research landscape mapping which reported that courts, custody, confinement, and interviewing settings pose multiple sensory challenges for autistic people.
Improved future state
The policy review includes a statement by the Law, Crime and Community Safety Council that settings in which people are detained should aim to be “inclusive”; the Australian Human Rights Commission document also highlights how the legal system should provide modifications and supports to enable participation in the justice system.
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Steps that can be taken to move from the current to the improved future state include:
- Given the lack of knowledge and identification of autism in the justice system (discussed above), the initial focus would be to proactively make settings within the justice system inclusive for autistic people (rather than waiting for people to disclose their diagnosis, or for someone to identify that a person is autistic before making adjustments to the environment). Participative walkthroughs (like the work of Holloway et al. (2020): sciencedirect.com/science/article/pii/S0891422219302124) and environmental audits of each justice system setting (e.g., interview room, custody, court room) can provide initial feedback on the sensory elements of these settings. They can also recommend simple, low-cost, and easily implementable changes that can increase the inclusivity of the setting
- Co-development of recommendations for newly built or refurbished autism-inclusive justice system settings
- Co-development of the physical/sensory aspects required for accreditation of autism-inclusive justice settings, see autism.org.uk/advice-and-guidance/professional-practice/accreditation-prison. Accreditation could reflect that the organisation is committed to supporting autism knowledge within their establishment(s) and that the environment is designed to be supportive of autistic people and their sensory differences.
3.6.3.4 There is a need to provide effective supports and accommodations for autistic people to ensure equitable access to the justice system
Current state
The community views survey highlighted that supports and accommodations were often not offered to autistic people, and that autistic people’s communication, language, and communication styles or preferences were not accommodated. There are many potential reasons for this, including a lack of autism knowledge, a lack of funding, resource- and time-constraints of those working in the justice system, or the justice system being based on neurotypical norms and expectations.
There was limited research identified in the umbrella reviews that looked at which supports or accommodations may be effective. That which has been conducted focused on interviewing practices, yet there is a clear need for adjustments beyond interviewing practices to better support autistic people across the justice system.
Improved future state
The community views survey identified that the justice system works well for autistic people when there is access to supports. It further identified that to reduce the problems experienced by autistic people in relation to the justice system, there needs to be increased funding and access to supports, an individualised approach to accommodations, and increased input into the justice system from neurodivergent people. This could be through training or by increasing the number of neurodivergent people working in the justice system.
Multiple policies within the policy review emphasise the need to provide person-centred and evidence-based supports to people entering the justice system. For example, Australia’s Disability Strategy (2021) states, “Effective access to justice for people with disability requires consideration of individual needs. Without this there can be no equitable or equal participation”. Other policies also highlight that police and other professionals in the justice system need to ensure that any
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potential offender understands the offence of which they are being accused. However, sources for professionals in the justice system, which provide recommendations on the provision of supports, rarely mention autism. For example, the Supreme Court of Queensland’s “Equal Treatment Benchbook” contains only one mention of the word autism, and that is within a statement encouraging judges to emphasise the person rather than the disability/diagnosis.
Steps that can be taken to move from the current to the improved future state include:
- Co-development of evidence-based supports and accommodations for supporting autistic people in different aspects of the justice system. Once these are evidence supported, there needs to be a pathway to dissemination so that such supports and accommodations are proactively available and offered to autistic people in every justice system setting.
- Co-development of resources and supports for autistic people to enhance their understanding of the legal system, and evaluation of the effectiveness of these resources and supports. Dependent upon community views, this may include supporting autistic people to proactively identify (either independently or with support) the accommodations or supports they may need should they be required to access the justice system.
- Some justice systems (including those in other countries) provide intermediaries or support individuals who are trained and knowledgeable about the supports or accommodations to which each autistic person is entitled. The Law Council’s National Disability Strategy notes the adoption of the National Justice Interpreter Scheme. There is a need for Australian research into the use of intermediaries, interpreters, and/or support people and their effectiveness in supporting autistic people in order to inform the usefulness of each option as a potential support or accommodation.
3.6.3.5 There is a need to ensure that autistic people feel safe when accessing the justice system
Current state
The community views survey revealed that almost one in four autistic adults highlighted feeling scared of, dismissed by, or experiencing discrimination by justice system professionals as a problem for autistic people accessing the justice system. One in 10 autistic adults also reported discrimination and ableism as an issue which causes problems for autistic people within the justice system. The research landscape mapping identified that the distrust and fear of the police experienced by some autistic people leads to them feeling reluctant to go to the police even if they are a victim of a crime.
Improved future state
The Australian Law Council website states that “all Australians have a fundamental right to access to legal advice and services, regardless of their means, and considers that the justice system becomes meaningless if there are barriers that prevent people from enforcing their rights.” This is echoed in policies reviewed, including the Australian Human Rights Commission Disability Justice Strategy (2014) which specifically states that there should be a focus on effective access to justice for people with disabilities.
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Steps that can be taken to move from the current to the improved future state include:
- Further consultation with the autistic community as to how to maintain, or rebuild, trust between autistic people and those in the justice system.
- Co-development (with the autistic and autism communities) of alternative or autism-specific pathways and support for autistic victims and/or witnesses to feel safe and supported to report crimes and provide testimonies.
- Training (noted above) to address ableism and discrimination of autistic people.
3.6.3.6 There is a need to understand more about why autistic people come into contact with the justice system more often as victims, offenders, and/or witnesses
Current state
One in 10 people in the community views survey highlighted the increased risk of autistic people coming into contact with the justice system (e.g., through poor judgement, manipulation, or coercion) as an issue. The research landscape mapping verifies this; autistic people are more likely to come into contact with the justice system and the case study reports suggest some specific characteristics associated with autism (e.g., social misunderstandings, differences with perspective taking, and special/deep interests) that may increase the likelihood of this occurring. Many autistic people’s interactions with the justice system are as victims and witnesses, and in contrast to the research (which focuses on autistic people as the offender), many of the comments within the community views survey focussed on autistic people as the victim of crime. For autistic people who come into contact as offenders, there are specific offence types which they are more likely than non-autistic people to commit. However, the majority of this research is based on non-Australian data and almost all on case-studies, which limits the generalisability of the findings.
Improved future state
Described in the policy review, the Australian Human Rights Commission’s “Equal Before the Law: Towards Disability Justice Strategies” document states that every person with a disability should feel safe and be free from violence so that they can live in safety and with dignity. However, the research shows that autistic people are more likely to be victimised than non-autistic people. Policies also state that a person’s diagnosis should be considered when identifying supports or interventions. However, there are no autism-specific strategies for offending and the research shows that strategies designed to prevent reoffending in non-autistic people are not appropriate or helpful for autistic offenders.
Steps that can be taken to move from the current to the improved future state include:
- Australian-specific data on how often autistic people interact with the police and the nature of their interactions. This would also be useful to inform the training described above
- At present, the research predominantly focuses upon autistic people as offenders but many of the problems raised in the community survey focussed upon autistic people who are victims and/or witnesses. This highlights the need to: (a) identify how and why autistic people are victimised, (b) identify ways to make autistic people safe and supported, and (c) ensure the research documents experiences and needs of autistic people accessing the justice system
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as non-offenders. This may lead to the development of resources for autistic people and/or resources to promote community awareness and acceptance of autism and diversity
- Development and evaluation of autism-specific or autism-relevant models of offending which can then be used to develop supports or treatments tailored for autistic people who commit specific offence types.
3.6.3.7 There is a need to know more about diversionary pathways, how often they are used, and whether they provide the right support for autistic people
Current state
Although not discussed in the research specifically, alternative pathways for autistic people through the justice system are provided via The Victorian Assessment and Referral Court List, South Australia’s Treatment Intervention Court (previously the Magistrates Court Diversion Program), Tasmania’s Diversion List, and Western Australia’s Intellectual Disability Diversion Program. However, little is known about their use or effectiveness.
Improved future state
Evidence-supported, effective, and accessible diagnostic-considerate court pathways and diversionary methods are needed across Australia.
Steps that can be taken to move from the current to the improved future state include:
- Use existing data to evaluate how many autistic people were referred to the courts listed above and diversionary methods, and evaluate experiences and outcomes of autistic people compared to those who have gone through the standard court process
- Document the experiences of autistic people who have been through these courts, including noting accommodations received and the impact that these accommodations had on the justice process.
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3.7 Mental health services
3.7.1 The “1,000 Insights” community views survey
A total of 539 respondents answered at least one of the questions on the mental health service. This included 250 autistic people, 327 family members or carers of autistic people, 75 mental health professionals, and 130 medical or allied health professionals. The 10 most frequently reported responses (where applicable) are reported within this section. However, the full list of response codes for each question within the mental health domain is available in Appendix J-1.
The tables for each question describe the response categories (with example participant responses) in order from the most frequently reported to the least frequently reported. For each category, percentages are provided to indicate the proportion of a respondent group whose response reflected the specific category. These groups are: (a) the entire sample (i.e., everyone), (b) autistic people, (c) family members/caregivers of autistic people, (d) mental health professionals, (e) medical or allied health professionals, and (f) all respondents who are not represented in one of these groups.
3.7.1.1 Problems experienced by autistic people when using, or trying to access, mental health services
A total of 539 respondents opted to answer this question on using, or trying to access, mental health services. This included 250 autistic people and 327 family members or carers of autistic people. The problems experienced were coded into 20 categories, which fall under the following eight broad areas:
- Challenges with obtaining a correct diagnosis
- Insufficient access to mental health professionals
- Lack of, or poor quality, autism knowledge and therapeutic skills held by mental health professionals
- Challenges with excessive cost or accessing funds
- Practices and strategies are not tailored to, or supportive of, autistic people
- Professionals may make assumptions or have preconceived ideas of autism (including holding a deficit-based view)
- Lack of autism training for people working in the mental health field
- Lack of communication between sectors/professionals leading to autistic people falling between the cracks and/or frustration (e.g., bounced between services; poor interaction between child and adult services; argument over who is responsible for funding).
Table 41 ranks the 10 most frequently reported categories of problems that autistic people experience in relation to using, or trying to access, mental health services. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem. Note that respondents often identified within multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the total of the subgroups will exceed the total number of all respondents.
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Of note is that these data show that approximately:
- 1 in 4 respondents highlight that there is insufficient availability or access to relevant, skilled mental health workers.
- 1 in 4 respondents highlight that mental health workers have limited knowledge or understanding of autism/neurodiversity, its presentation, and its impact across the lifespan.
It is important to acknowledge that challenges associated with mental health crisis support was identified as a problem within the mental health service by 4% of respondents. When autistic people are experiencing crisis, they find there are limited crisis services, and those that are available lack quality (e.g., do not follow through on promised support; rely on phone calls which may not be a preferred or accessible contact method for autistic people).
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Table 41: 10 most frequently reported problems experienced by autistic people in relation to using or trying to access mental health services
| Rank | Problems experienced by autistic people in relation to using or trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 539 | Autistic people n = 250 | Family member/caregiver of autistic person n = 327 | Mental health professionals n = 75 | Medical and allied health professionals n = 130 | Other respondent groups* n = 192 | |||
| 1 | Insufficient availability/access of relevant, skilled mental health worker (e.g., lack of providers who can do assessments; challenges finding a neurodivergent therapist) |
“Not enough access to Occupational Therapists who can help open the door to more needed mental health help.” (ID 153) “Access to enough psychologists for assessments and therapies because only a small number of psychologists are endorsed ‘clinical’.” (ID 555) |
24% | 18% | 27% | 21% | 22% | 21% |
| 2 | Lack of knowledge or understanding of autism/neurodiversity, its presentation, and its impact across the lifespan (e.g., lack of knowledge about autism in females; lack of understanding of lived experience) |
“Very few psychologists understand autism. Even fewer understand pathological demand avoidance. Psychologists who don’t understand autism can cause harm.” (ID 955) “Most mental health service practitioners do not have enough knowledge about autism (especially as it presents in women) to be able to tailor mental health support appropriately.” (ID 1159) |
23% | 28% | 22% | 29% | 24% | 21% |
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| Rank | Problems experienced by autistic people in relation to using or trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 539 | Autistic people n = 250 | Family member/caregiver of autistic person n = 327 | Mental health professionals n = 75 | Medical and allied health professionals n = 130 | Other respondent groups* n = 192 | |||
| 3 | Prohibitive cost (e.g., very expensive; services able to charge too much) |
“I am horrified by the concept of ‘bulk billing’ and ‘gap fees’ - Australia is meant to be a First World country. Waiting lists are to be expected, but many people who need mental health support the most have given up hope of ever accessing support because they can’t afford the gap fee.” (ID 68) “Costs can be prohibitive for some families given the long-term nature of mentoring required for some clients.” (ID 380) |
22% | 28% | 22% | 12% | 15% | 23% |
| 4 | Long or closed waitlists (e.g., long waiting time to access diagnostic services, psychologists, and psychiatrists; waiting lists exacerbate issues) |
“General wait time to start seeing a psychiatrist in our area is 18 months. It took 8 months for us to get an appointment with [a] psychologist.” (ID 30) “Mine is the wait time. I needed to see/talk to my psychotherapist with an issue in early March. My appointment is in mid May.” (ID 1329) |
21% | 19% | 24% | 9% | 15% | 22% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 261 What we found – Mental health services
| Rank | Problems experienced by autistic people in relation to using or trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 539 | Autistic people n = 250 | Family member/caregiver of autistic person n = 327 | Mental health professionals n = 75 | Medical and allied health professionals n = 130 | Other respondent groups* n = 192 | |||
| 5 | Insufficient availability/access of appropriate services (e.g., lack of services specialising in autism; long distance to travel) |
“Services [are] often geographically difficult to access requiring children to miss a lot of school to attend appointments and parents to miss work to drive children to and from appointments (in my case having to move to part-time work to support driving my child to appointments)” (ID 1131) | 20% | 17% | 19% | 17% | 18% | 23% |
| 6 | Misdiagnosis of autism and/or co-occurring conditions (e.g., misdiagnosing autism as, for example, a personality disorder; diagnostic overshadowing) |
“I’ve been in and out of therapy my whole life, at one point was diagnosed with emotional [deprivation] disorder. I had an inkling when my daughter was small and I saw it in her then [realised] it was me too. I think I suggested it in therapy but it must have seemed absurd to the psychologist. Now I know, and I know my (dec) partner was autistic and that my mum likely is and so on.” (ID 477) “I’ve seen professionals for years and been misdiagnosed with anxiety, social anxiety, depression, and PTSD. I have none of these conditions.” (ID 1346) |
10% | 12% | 9% | 13% | 11% | 9% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 262 What we found – Mental health services
| Rank | Problems experienced by autistic people in relation to using or trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 539 | Autistic people n = 250 | Family member/caregiver of autistic person n = 327 | Mental health professionals n = 75 | Medical and allied health professionals n = 130 | Other respondent groups* n = 192 | |||
| 7 | Lack of knowledge or understanding of the interaction between autism and co-occurring conditions including mental health problems (e.g., lack of knowledge of mental health issues and experiences for autistic people; lack of understanding of co-occurring conditions including ADHD and mental health) |
“Finding a competent mental health professional that really understands the autistic experience of comorbid conditions such as anxiety, OCD, depression - that the autistic expression of these conditions may be different, especially if they also have intellectual disability.” (ID 91) | 7% | 6% | 7% | 7% | 9% | 7% |
| 8 | Strategies not tailored for the individual client or neurodivergent people (e.g., not tailored for individual needs or preferred goals; neurotypical strategies do not always work for autistic people) |
“Mental health workers often try to use regular interventions like CBT which isn’t always suitable for neurodivergent people, or they’re not well versed in what autistic people actually need. One example is being asked ‘Where do you feel that in your body?’ Well, autistic people sometimes don’t feel like things hunger etc, how can we be expected to know where we feel a feeling, that usually we struggle to even name the feeling in the first place.” (ID 288) | 7% | 10% | 6% | 3% | 5% | 7% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 263 What we found – Mental health services
| Rank | Problems experienced by autistic people in relation to using or trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 539 | Autistic people n = 250 | Family member/caregiver of autistic person n = 327 | Mental health professionals n = 75 | Medical and allied health professionals n = 130 | Other respondent groups* n = 192 | |||
| 9= | Access refused due to autism diagnosis (e.g., refusal of autistic client for fear of doing harm; services do not support autistic people) |
“CAMHS [Child and Adolescent Mental Health Service - WA] refusing to support children and teenagers with ASD who also have mental health concerns. Referrals are often knocked back purely on the basis of disability without taking into account the individuals mental health needs.” (ID 410) “Professionals may feel fearful of doing harm and therefore refuse to see individuals with autism, restricting [the] number of providers able to assist.” (ID 643) |
6% | 4% | 7% | 12% | 12% | 8% |
| 9= | Challenges accessing services due to lack of support, knowledge, or accommodations (e.g., challenges navigating the services; challenges booking appointments by telephone) |
“Executive dysfunction that some autistic people experience can mean that finding a psychologist with availability and expertise can take a very long time or assistance is required from a support person. It can mean sending emails about appointments or reports can take weeks or months to send, which for a neurotypical person could take 5 minutes.” (ID 873) “It’s always phone calls to try and access services so I often just don’t.” (ID 1081) |
6% | 6% | 6% | 9% | 3% | 9% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 264 What we found – Mental health services
| Rank | Problems experienced by autistic people in relation to using or trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 539 | Autistic people n = 250 | Family member/caregiver of autistic person n = 327 | Mental health professionals n = 75 | Medical and allied health professionals n = 130 | Other respondent groups* n = 192 | |||
| 9= | Professionals may make assumptions or have preconceived ideas of autism, holding a deficit based view (e.g., stereotyping; behaviours viewed as attention seeking) |
“The surprise when health professionals finally see me when my disability becomes impactful because of increased stress as [they] assume that I wasn’t as disabled as I told them.” (ID 940) | 6% | - | - | - | - | - |
Note. *all other groups that have not been identified separately
Research evidence, policy and landscape mapping to inform the National Autism Strategy 265 What we found – Mental health services
3.7.1.2 Factors causing the problems experienced by autistic people when using, or trying to access, the mental health service
A total of 452 respondents opted to answer this question on using, or trying to access, mental health services. This included 213 autistic people and 280 family members or carers of autistic people. The factors that respondents felt were causing or leading to the problems experienced by autistic people when using, or trying to access, mental health services were coded into 19 categories, which fall under the following 11 broad areas:
- Lack of, and poor quality of, autism training available for mental health professionals
- Lack of autism-relevant knowledge and skills held by mental health professionals
- Insufficient access to relevant professionals or services
- Challenges accessing funding for mental health purposes
- Problems within the mental health sector
- Strategies considered insufficient, inappropriate, or poor quality
- Negative impact of decisions made by the government
- The lack of knowledge base and deficit-based assumptions of practices
- Challenges around diagnosis
- Preconceived ideas and stereotypes of autism held by professionals
- Impact of autism characteristics (or associated characteristics) on therapy.
Table 42 ranks the 10 most commonly reported factors that respondents felt were causing the problems that autistic people experience in relation to using, and trying to access, mental health services reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem. Note that respondents often identified within multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the number of respondents in subgroups exceeds the total number of all respondents.
Importantly, these data show that approximately:
- 1 in 4 respondents stated that the problems were due to lack of, or poor quality of, training for mental health professionals.
- 1 in 4 respondents reported that the problems were due to staff in mental health settings having insufficient knowledge of autism and neurodivergent conditions, its presentation, and its impact.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 266 What we found – Mental health services
Table 42: 10 most frequently reported factors causing the problems experienced by autistic people in relation to using or trying to access mental health services
| Rank | Factors causing the problems experienced by autistic people in relation to using, or trying to access, mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 452 | Autistic people n = 213 | Family member/caregiver of autistic person n = 280 | Mental health professionals n = 70 | Medical and allied health professionals n = 118 | Other respondent groups* n = 170 | |||
| 1 | Lack of, or poor quality of, training for mental health professionals (e.g., poor training; lack of training in diagnosing and treating autism appropriately) |
“Lack of education leads to a lack of accommodations leading to a lack of appropriate care for neurodiverse people.” (ID 162) “Psychologists and mental health professionals have not been taught about autistic mental health from autistic made sources.” (ID 816) |
23% | 27% | 17% | 39% | 29% | 22% |
| 2 | Lack of knowledge or understanding of autism and neurodivergent conditions, its presentation, and its impact (e.g., lack of understanding the heterogeneous presentation of autism; lack of understanding of stresses associated with autism) |
“Lack of understanding that autism can be ‘missed’ in childhood, but masking ‘hides’ issues- especially for biological women.” (ID 842) | 22% | 28% | 22% | 31% | 28% | 20% |
| 3 | Insufficient number of professionals with an interest/expertise in autism (e.g., lack of qualified people specialising in autism; lack of specialists in rural areas) |
“There aren’t enough general psychologists let alone any that specialise in autism.” (ID 41) | 19% | 12% | 20% | 13% | 17% | 19% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 267 What we found – Mental health services
| Rank | Factors causing the problems experienced by autistic people in relation to using, or trying to access, mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 452 | Autistic people n = 213 | Family member/caregiver of autistic person n = 280 | Mental health professionals n = 70 | Medical and allied health professionals n = 118 | Other respondent groups* n = 170 | |||
| 4 | Insufficient funding (generally) (e.g., lack of funding; funding shortfall) |
“Too expensive. Some don’t have NDIS but can’t afford support, as rates are charged at NDIS prices with no acceptance of GP mental health plans or chronic disease management plans.” (ID 17) | 19% | 15% | 20% | 13% | 19% | 17% |
| 5 | Concern about therapeutic skills and/or attitude (e.g., lack of respect; ableism; not allowing time to develop relationship; ignorance) |
“Busy staff … just ticking boxes etc, without any empathy or humility or desire to truly help improve peoples’ lives.” (ID 147) “Focus on quickly getting assessments and diagnosis rather than relationship and rapport building to understand what the individual’s baseline is, and lack of critical engagement with family/caregivers.” (ID 998) |
13% | 17% | 13% | 13% | 13% | 12% |
| 6 | Overwhelmed system/professionals with insufficient resources (e.g., lack of resources; overwhelmed staff; time pressure) |
“EXTREMELY limited resources dedicated to supporting autistic people in a meaningful manner.” (ID 784) “System overburden and burnout. Clinicians have high caseloads and are time poor. Complexity associated with autism and greater time commitment results in greater unwillingness to work with Autistic people.” (ID 1357) |
10% | 7% | 11% | 9% | 8% | 11% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 268 What we found – Mental health services
| Rank | Factors causing the problems experienced by autistic people in relation to using, or trying to access, mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 452 | Autistic people n = 213 | Family member/caregiver of autistic person n = 280 | Mental health professionals n = 70 | Medical and allied health professionals n = 118 | Other respondent groups* n = 170 | |||
| 7 | Strategies and practices considered insufficient, inappropriate, or poor quality (e.g., lack of awareness of how to modify practices; neuronormative concepts of well-being applied to autistic people) |
“Mental health professionals profess to only ‘treat the mental health condition’ with no consideration of how neurodivergence is interwoven and part of the whole person.” (ID 354) “The promotion of ‘evidence based’ treatments such as CBT and ABA - these do not work for most ND clients.” (ID 852) |
10% | 9% | 10% | 13% | 14% | 12% |
| 8 | Impact of decisions made by the government (e.g., government policies; government cuts; poor management of mental health services) |
“Poor government policy and intervention - need clear guidance, programs to ensure service availability, subsidies costs, and better designed medical and mental healthcare systems to ensure early diagnosis by frontline medical, educational or caregiver staff (diagnosis should not rely on self-diagnosed first!).” (ID 1494) “Gov’t agencies playing a ‘not my responsibility card’ and yoyo’ing people between NDIS, Medicare, Private Health and Public Health.” (ID 1555) |
9% | 10% | 8% | 9% | 8% | 8% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 269 What we found – Mental health services
| Rank | Factors causing the problems experienced by autistic people in relation to using, or trying to access, mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 452 | Autistic people n = 213 | Family member/caregiver of autistic person n = 280 | Mental health professionals n = 70 | Medical and allied health professionals n = 118 | Other respondent groups* n = 170 | |||
| 9 | Lack of knowledge, understanding, or experience of co-occurring conditions including mental health, and their interaction with autism (e.g., lack of knowledge about, or experience with, mental health conditions, autistic burnout) |
“The actions of mental health services and staff just cause more trauma to people with autism. They are incapable of handling me as one human being who has autism, two serious mental illnesses and several chronic physical illnesses.” (ID 1436) | 8% | 7% | 8% | 9% | 9% | 10% |
| 10 | Insufficient number of, or access to, services (e.g., lack of services/facilities; gatekeeping; distance for rural people) |
“Gatekeeping in psychology training and registration artificially decreasing the number of psychologists.” (ID 724) | 8% | 6% | 7% | 3% | 9% | 12% |
Note. *all other groups that have not been identified separately
Research evidence, policy and landscape mapping to inform the National Autism Strategy 270 What we found – Mental health services
3.7.1.3 Factors that could prevent or reduce the problems experienced by autistic people when using, or trying to access, mental health services
A total of 422 respondents opted to answer this question on using, or trying to access, mental health services. This included 250 autistic people and 264 family members or carers of autistic people. The factors that respondents identified as preventing or reducing the problems experienced by autistic people when using, or trying to access, mental health services were coded into 14 categories. These categories fall under the following eight broad areas:
- Training and education for mental health professionals
- More providers and access to mental health services
- Reduced financial barriers
- Enhanced relevant therapeutic skills tailored to autistic clients
- Changes to practice to focus on strengths, neurodiversity affirming care, and skills relevant to supporting autistic people
- Government reform and support of mental health sector
- Improve communication and integration between professionals and/or sectors
- Co-developed research to develop an evidence base to enhance understanding of autism and practices appropriate for neurodivergent people.
Table 43 ranks the 10 most commonly reported factors that respondents reported could prevent or reduce the problems that autistic people experience in relation to using, or trying to access the mental health services reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem. Note that respondents often identified within multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the number of respondents in subgroups exceeds the total number of all respondents.
Importantly, these data show that there was a clear, predominant factor highlighted by respondents:
- Over 2 of every 5 respondents identified training in autism as a factor that could prevent or reduce the problems experienced by autistic people when using, or trying to access, mental health services.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 271 What we found – Mental health services
Table 43: 10 most frequently reported factors that could prevent or reduce the problems experienced by autistic people in relation to mental health services
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to using or trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 422 | Autistic people n = 250 | Family member/caregiver of autistic person n = 264 | Mental health professionals n = 65 | Medical and allied health professionals n = 111 | Other respondent groups* n = 154 | |||
| 1 | Increase (access to) training for people working as mental health professionals to enhance their understanding of autism (and other neurodivergence), including training from autistic people with lived experience (e.g., mandatory, regular training; autistic informed/delivered training) |
“Better education of training psychologists both to better understand autism and its different presentations and best evidence therapies for autistic clients and of neuro affirming practices. Ideally this should come from the voices of the handful of autistic psychologists currently practicing that are leading this movement.” (ID 90) | 42% | 46% | 40% | 45% | 47% | 36% |
| 2 | More mental health professionals, including those specialising in autism, and those who are autistic/neurodivergent themselves (e.g., more doctors; more psychologists; create new roles and professions to support autistic people; incentives for experts; alternative qualification pathways) |
“Government to address the lack of psychological services in the community i.e. allow provisional psychologists to be covered by Access to Mental Health Care plan sessions to increase numbers in the community and continue to improve services.” (ID 1204) | 20% | 19% | 21% | 22% | 23% | 21% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 272 What we found – Mental health services
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to using or trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 422 | Autistic people n = 250 | Family member/caregiver of autistic person n = 264 | Mental health professionals n = 65 | Medical and allied health professionals n = 111 | Other respondent groups* n = 154 | |||
| 3 | Increase funding and/or affordability of mental health services across the lifespan when autistic people need their services (e.g., government funded functional capacity assessment; price caps and/or rebates) |
“The Government needs to properly fund mental health services, so that when autistic people need their services, they are not simply referred back to their NDIS providers.” (ID 532) “Somehow reducing the cost of things like therapy and having more psychologists/ positions for psychologists available.” (ID 882) |
19% | 19% | 21% | 11% | 18% | 21% |
| 4 | Improve access to, and quality of, services (e.g., reduce the red tape; consideration of access for regional and rural areas; services for people with complex needs) |
“Have more mental health services available for transition from early childhood, to primary and secondary school, then a big increase at [the] end of high school. Transition to adult services when done effectively early, will ultimately benefit the young person with Autism and also place less strain on the medical system down the track.” (ID 559) “There should be the ability to access psychosocial support whenever needed once a diagnosis is given. Kind of like an unlimited referral that sometimes can be given for other specialists.” (ID 963) |
12% | 9% | 11% | 19% | 10% | 12% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 273 What we found – Mental health services
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to using or trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 422 | Autistic people n = 250 | Family member/caregiver of autistic person n = 264 | Mental health professionals n = 65 | Medical and allied health professionals n = 111 | Other respondent groups* n = 154 | |||
| 5 | Enhance the quality of university education and number of places availability (e.g., do not phase out psychology general registration pathway; provide education on neurodiversity-affirming practice; include information on co-occurring intellectual disability and other co-occurring conditions) |
“Increase the number of university places for mental health professionals - especially psychologists AND ensure the general registration pathway (honours degree + 2-year internship) pathway is not phased out.” (ID 60) “Psychology and psychiatry curricula need mandatory information about autism.” (ID 1092) |
11% | 9% | 11% | 14% | 14% | 11% |
| 6 | Enhance the therapeutic skills and awareness of mental health professionals to support their work with autistic clients (e.g., listen to [and believe] the client to identify challenges; account for possible challenges in identifying emotions or forming trust) |
“Listening to the individual or working their psych magic to discover what’s not ok and changing course when required. Giving time and space. Being creative. I’ve learnt a lot with toys and characters and truly benefit from a psychologist who helped me by using early childhood things like a ‘circle of friends’.” (ID 185) | 10% | 11% | 9% | 9% | 12% | 14% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 274 What we found – Mental health services
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to using or trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 422 | Autistic people n = 250 | Family member/caregiver of autistic person n = 264 | Mental health professionals n = 65 | Medical and allied health professionals n = 111 | Other respondent groups* n = 154 | |||
| 7 | Facilitate changes to practice to focus on strengths, neurodiversity affirming care, and skills relevant to supporting autistic people (e.g., use social model rather than medical model; neurodiversity affirming practice) |
“Stop looking at behaviour and search for unmet needs.” (ID 17) “Use of universal strategies that would enable any struggling individual to thrive - soothing environment, reduced demands, genuine relational basis, thorough skill building, individually tailored program. NOT providing short term superficial and inconsistent program or supports that reinforce fear of change and experience of failure.” (ID 581) |
10% | 10% | 11% | 17% | 6% | 12% |
| 8 | Make access and use of services easier and more autism-friendly (e.g., alternative methods to book appointments, increased flexibility of appointments; environment) |
“Autistic people need more options around the structure and timing of mental health appointments, such as shorter, more frequent appointments, or appointments that are not conducted in real time (like audio message appointments).” (ID 290) “Ensure that clinics and such are warm, welcoming spaces that are sensitive to the sensory needs of people with autism.” (ID 1004) |
9% | 10% | 8% | 11% | 5% | 9% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 275 What we found – Mental health services
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to using or trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 422 | Autistic people n = 250 | Family member/caregiver of autistic person n = 264 | Mental health professionals n = 65 | Medical and allied health professionals n = 111 | Other respondent groups* n = 154 | |||
| 9 | Implement NDIS specific improvements for funding access (e.g., more inclusive funding; automatic access to NDIS for autistic people) |
“NDIS needs to accept more high functioning autistic people and ALWAYS APPROVE weekly psychology for autistic people.” (ID 81) “My son is diagnosed with ASD, PDA, OCD, PTSD, and Cluster B personality disorder. He keeps falling through bureaucratic cracks because he receives the NDIS for Autism/OCD which doesn’t cater to his mental health diagnoses.” (ID 1119) |
7% | 7% | 8% | 8% | 8% | 8% |
| 10 | Implement Medicare-specific improvements for increasing affordability of mental health care (e.g., allow provisional psychologists to work under Medicare; Medicare funding for mental health) |
“Medicare and state health service models need to move towards activity and funding models that accommodate and reward complex, integrated care.” (ID 373) “Bring back the extra sessions available with a Medicare rebate on a mental health care plan.” (ID 1324) |
7% | 9% | 5% | 12% | 10% | 6% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 276 What we found – Mental health services
3.7.1.4 Factors that are working well, or have worked well, for autistic people in relation to using or trying to access mental health services
A total of 322 respondents opted to answer this question on using, or trying to access, mental health services. This included 121 autistic people and 201 family members or carers of autistic people. The factors that, when available, are reported to be working well, or have worked well, for autistic people in relation to using to trying to access mental health services were coded into 12 categories, which fall under nine broad areas:
- Nothing/not a lot
- Finding the right mental health professional, including those with good therapeutic skills and lived experience
- NDIS once funding has been provided to support needs
- Alternative or flexible access (inc. making appointment and practice) when available
- Support from family, friends, and the autistic/neurodivergent community
- Having a range of practices including those that are neurodiversity-affirming
- Developing a safe, trusting therapeutic relationship
- Having a range of different services, including crisis helplines, autism-specific services, and community services
- Increased awareness of autism/neurodivergence and the benefits of mental health support.
Table 44 ranks the five most commonly reported factors that respondents reported to be working well, or have worked well, for autistic people in relation to using, or trying to access, mental health services. The data are ranked from most frequently reported to least frequently reported factors that are working well across all respondents. The right-hand columns report what proportion of specific respondent groups reported this as a factor that is working well or has worked well. Note that respondents often identified within multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the number of respondents in subgroups exceeds the total number of all respondents.
Importantly, these data show that approximately:
- 1 in 5 respondents felt that nothing or not a lot was working to support autistic people within mental health services.
- Almost 1 in 5 stated that finding the right mental health professional for them was one factor that is working well in the mental health service. (NB. This was often accompanied by a statement regarding the need to hold onto that mental health professional at all costs.)
Research evidence, policy and landscape mapping to inform the National Autism Strategy 277 What we found – Mental health services
Table 44: 10 most frequently reported factors that are working well, or have worked well, in relation to autistic people using or trying to access mental health services
| Rank | What is working well, or has worked well, in relation to autistic people using to trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 322 | Autistic people n = 121 | Family member/caregiver of autistic person n = 201 | Mental health professionals n = 53 | Medical and allied health professionals n = 79 | Other respondent groups* n = 117 | |||
| 1 | Nothing/Not a lot | “In our experience of accessing mental health services for our son, I can honestly say that there has been nothing that has worked well. We have been constantly left trying to navigate/fight a broken system, whilst trying to keep our son alive.” (ID 48) “Nothing is working well, the cost is unaffordable and the waiting times are causing higher rates in suicide and trips to the ER where they are not receiving sufficient help with mental health, only a band aid solution and sent home with tablets.” (ID 528) |
21% | 25% | 23% | 9% | 18% | 24% |
| 2 | When you find the right mental health professional for you, who is often knowledgeable/experienced about autism and its associated needs (e.g., understands autism and neurodiversity; experience working with autistic people) |
“Extremely well trained and experienced mental health practitioners and psychologists are a godsend. Just brilliant.” (ID 935) “When you find an attuned social worker/psychologist who really ‘gets’ what it is like to be autistic and the level of anxiety that can permeate every aspect of daily life, you can really start to make therapeutic headway into teaching/earning strategies that will support during a crisis.” (ID 963) |
19% | 18% | 16% | 26% | 24% | 20% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 278 What we found – Mental health services
| Rank | What is working well, or has worked well, in relation to autistic people using to trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 322 | Autistic people n = 121 | Family member/caregiver of autistic person n = 201 | Mental health professionals n = 53 | Medical and allied health professionals n = 79 | Other respondent groups* n = 117 | |||
| 3 | When NDIS funding has been provided to support needs (e.g., NDIS can reduce mental health challenges when all needs are covered; supportive NDIS plan manager) |
“NDIS supports can generally and holistically reduce mental health burden when all needs are covered and assisted with. Prevention is better than cure. In this way NDIS is fantastic and will probably save the government money due to less crisis intervention later down the track.” (ID 60) “NDIS has provided a new method for autistic individuals who are supported by the NDIS to access psychology services without personal financial cost.” (ID 1203) |
15% | 13% | 13% | 21% | 22% | 15% |
| 4 | When alternative/flexible access are available (inc. making appointment and practice) (e.g., online chat services; alternative booking options such as leaving voice message or online portal) |
“More mental health practitioners are offering flexible appointment structures using tools like online portals where patients can upload images/writing, and audio message programs like Voxer.” (ID 290) “Access to Telehealth services is an important step forward, particularly for autists, and family members who may experience anxiety related conditions and/or depression.” (ID 937) |
10% | 13% | 11% | 6% | 3% | 12% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 279 What we found – Mental health services
| Rank | What is working well, or has worked well, in relation to autistic people using to trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 322 | Autistic people n = 121 | Family member/caregiver of autistic person n = 201 | Mental health professionals n = 53 | Medical and allied health professionals n = 79 | Other respondent groups* n = 117 | |||
| 5 | Support from family, friends, and autistic/neurodivergent community (e.g., parent advocacy; ability to bring trusted person to appointments; social groups to meet other autistic people) |
“The best thing I experienced was going to an Aspergers support group for adults on the spectrum.” (ID 406) “Parents who can afford private services. Parents who jump up and down and push for access. Parents who advocate.” (ID 773) |
8% | 8% | 9% | 4% | 5% | 9% |
| 6 | When a professional has lived experience (e.g., are autistic/neurodivergent, or have autistic family members) |
“I am happy to say that I can now access a psychologist through my NDIS plan and the best thing is they are on the spectrum themselves so I am really comfortable talking to them, however this has not always been the case.” (ID 400) “I happened to have an autistic psychologist once and he was the most helpful psychologist I have ever had. I had never really made any progress with counseling before and usually it made me feel worse so I would stop going. Just from my experience I would say that an autistic psychologist is better for an autistic person, than a neurotypical psychologist.” (ID 1328) |
7% | 10% | 6% | 8% | 9% | 7% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 280 What we found – Mental health services
| Rank | What is working well, or has worked well, in relation to autistic people using to trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 322 | Autistic people n = 121 | Family member/caregiver of autistic person n = 201 | Mental health professionals n = 53 | Medical and allied health professionals n = 79 | Other respondent groups* n = 117 | |||
| 7= | The recent shift towards neurodiversity affirming and strengths-based practice, rather than relying on medical model (e.g., focus on the strengths of a person rather than the challenges) |
“Focusing on the person’s well-being and how to support improved well-being rather than functioning like [a neurotypical].” (ID 164) “Psychologists who write things like ‘Mary thrives in fast-paced environments’ to describe an extremely ADHD autistic person! Such professionals can really help identify areas that the autist will thrive in long-term.” (ID 1269) |
7% | 9% | 8% | 9% | 13% | 8% |
| 7= | A range of different approaches and modifications highlighting that no single approach is suitable for everyone (e.g., trauma-informed; assistance animals; art therapy; social skills sessions; psychotherapy; group sessions) |
“Professionals who are flexible and use alternative methods such as Equine therapy, using an assistance dog, OTs that have gym equipment for regulation during session[s]. The traditional ‘talking’ therapy doesn’t work.” (ID 359) “Art, music, activities in sessions - making art in therapy is helpful because it externalises the focus of therapy onto the art object. […]. Engaging senses in soothing activities also helps contain and nourish people so that they don’t feel as exposed and they can feel calmer.” (ID 897) |
7% | 6% | 8% | 11% | 1% | 7% |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 281 What we found – Mental health services
| Rank | What is working well, or has worked well, in relation to autistic people using to trying to access mental health services and sample quotes from responses | Direct insight | Respondents who stated this as a problem | |||||
|---|---|---|---|---|---|---|---|---|
| All respondents N = 322 | Autistic people n = 121 | Family member/caregiver of autistic person n = 201 | Mental health professionals n = 53 | Medical and allied health professionals n = 79 | Other respondent groups* n = 117 | |||
| 7= | When you develop a safe, trusting, therapeutic relationship (e.g., feeling safe; building long-term relationship; continuity of care) |
“Seeing the same person locally for some years has been really helpful to make progress, it takes months to warm up to a new person.” (ID 942) “Once you find ‘your person’, the neurodivergent person feels safe and things can change [improve].” (ID 974) |
7% | 5% | 7% | 9% | 6% | 5% |
| 10 | When a professional has good therapeutic skills (e.g., compassionate, flexible, listens, patient, speaking calmly) |
“Speaking calmly and patience.” (ID 858) “An empathetic person… Someone who can prompt or assist them to complete all the necessary steps instead of giving up due to depression.” (ID 1481) |
5% | 6% | 8% | 5% | 4% | 4% |
Note. *all other groups that have not been identified separately
Research evidence, policy and landscape mapping to inform the National Autism Strategy 282 What we found – Mental health services
3.7.2 Umbrella review
An umbrella review is a form of research that brings together the findings of all existing reviews (systematic and scoping) that report on a specific topic. The focus of this review is on the mental health service itself (e.g., providers, delivery method), rather than on specific therapies offered when an autistic person is within a mental health service. The terms used for the searches and the number of articles identified, screened, and included are provided in Appendix J-2 and Appendix J-3. The final umbrella review reports on 14 systematic reviews, five of which were led by Australian authors. All of these systematic reviews were written in the last 5 years. The 14 systematic reviews collectively report on 391 individual studies.
The information and findings from the included reviews are summarised in the subsections below. When reporting on the number of people or participants in the review, this will be represented as n = [number of participants]. When reporting on the number of reviews that considered a topic, this will be represented as k = [number of reviews].
3.7.2.1 Participants within included reviews
In total, the reviews included 7,626,660 participants, with sample size for individual studies ranging from 1 to 6,724,857 (M = 635,555; SD = 1,924,556.93). Of these participants, 202,953 (2.66%) were reported to be autistic. Only seven systematic reviews provided information on the gender of autistic participants; most of the autistic participants in these reviews were male (average percentage = 71.24%) and ranged in age from 0 to 100 years.
3.7.2.2 Quality of included reviews
The quality of the included systematic reviews was assessed using the JBI Critical Appraisal Tool for Systematic Reviews. This tool assesses the methodological quality of a systematic review. The maximum score is 33, which indicates a very high-quality systematic review. The average quality score for the 14 included systematic reviews was 27.64 (84%), with the quality score ranging from 21 to 32.
3.7.2.3 Topics of included reviews
The 14 reviews identified in the area of autism and mental health services can be summarised across four key topics. These were barriers and facilitators to accessing mental health services (k = 8 reviews); mental health practitioners: autism training, knowledge, and experience (k = 4); service use and predictors of service use (k = 3 reviews); and technology and telehealth in mental health services (k = 4). The key findings for each topic are presented in Table 45.
3.7.2.4 Research gaps
After reading the 14 reviews, the research team identified a number of key research gaps. These are combined with the relevant research gaps noted within the reviews themselves, and summarised in Table 45.
There is limited research documenting the mental healthcare needs of autistic people in Australia; met and unmet. The majority of the research looking at mental health services for autistic people describes the experiences of autistic adults or parents of autistic children, so there is a need to document the views and experiences of autistic young people accessing mental health services.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 283 What we found – Mental health services
Within the mental health systems, there is the potential to research autism-specific pathways, with models of such pathways being documented in the UK and USA. There is also limited research exploring autistic people’s use of and experiences with informal mental health supports, such as helplines or digital mental health supports. These informal supports are becoming increasingly critical given the long waiting lists for formal mental health supports. There was a consistent finding that mental health care professionals lack knowledge of autism, and ways to tailor their approach to support autistic people. This highlights the need for research to address this issue through co-developed and co-delivered training, the impact of which should be assessed through subjective and objective methods.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 284 What we found – Mental health services
FOI 24/25-1567Table 45: Umbrella review findings for mental health services
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Barriers and facilitators to accessing mental health services | $k = 8$ Adams & Young (2021) Anderson et al. (2022) Brede et al. (2022) Cameron et al. (2021) Cleary et al. (2022a) Cleary et al. (2022b) Dickson et al. (2021) Hartley et al.* (2022) |
• Frequently reported barriers (noted in reviews of community perspectives and intervention trials) include – practitioner/professionals’ lack of autism knowledge or their lack of tailoring approaches to autism – waiting lists – time/appointment scheduling – not meeting inclusion criteria – not being believed or mental health problems not seen as severe enough – unclear referral or access pathways – costs, including funding of service or insurance coverage – client motivation. • Barriers to continuity of care in mental health services from childhood to adulthood are similar: clinicians’ perceptions and limited understanding of autism (specifically autism in adulthood), long waiting lists, (lack of) spaces available in the adult mental health services, and disengagement of the autistic individual • The large number of barriers lead many autistic people and their family members to believe that mental health services are unsuitable, inaccessible, and unable to meet autistic individuals’ needs, which impacts upon their likelihood to seek help, especially for less significant issues • Facilitators to accessing mental health support include: – continuity of sessions/service provider – therapists adapting approach/intervention to meet clients’ needs – therapist having knowledge of autism. • Two reviews identified studies which evaluated group-based services. Participants in these studies reported enjoying the group format to learn from peers and make connections |
• Young autistic people’s experiences of accessing mental health services to identify barriers/facilitators for engaging with mental health services • Development and evaluation of autism-specific mental health pathways in services which can be tailored based on client preference and/or need (e.g., individualised/group, face-to-face vs online, differing communication methods). Evaluation of pathways impact on engagement and outcomes • Evidence-based co-designed training and its impact on practitioner knowledge and their practical/clinical skills when supporting autistic clients • What is needed to support transition from child to adult mental health services in Australia’s mental healthcare system • The potential for bridging formal with informal supports, including a potential role for autism-specific mental health hotlines or online chat support • Experiences of autistic people within specialist (but not autism-specific) services, such as Gender Dysphoria or Eating Disorder services |
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| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Mental health practitioners: Autism training, knowledge, and experience | $k = 4$ Cameron et al. (2021) Coughlan et al. (2020) Crede et al. (2022) Dickson et al. (2021) |
• As well as being identified as the most common barrier to accessing mental health services across multiple reviews, how much knowledge a practitioner had about autism, training related to autism, and practitioners’ experience in supporting autistic clients was discussed in three reviews • GPs achieved autism knowledge scores around 66%. GPs across multiple studies stated that they developed their autism knowledge from the media or from personal connections • Not all mental health practitioners feel confident in supporting the mental health needs of autistic individuals • Mental health practitioners may need to adapt approaches to support autistic clients, but due to a lack of evidence and training in how to do this, this can be inconsistent and ad hoc |
• Evidence-based co-designed (and ideally co-delivered) training and its impact on practitioner knowledge as well as their practical/clinical skills when supporting autistic clients • Professionals’ experiences of working with autistic young people with specific mental health conditions (e.g., depression) and what they use to make clinical decisions • Empirical data on effectiveness and acceptability of adaptations to mental health approaches (e.g., changing from small group to individual session, shortened session, etc.) • Provider knowledge of autism-specific presentations of mental health problems and how such presentations are monitored in the absence of autism-specific measures of mental health • How more autistic people can become accredited to provide mental health supports to autistic people |
| Autistic people’s use of, and predictors of the use of, mental health services | $k = 4$ Anderson et al. (2022) Cleary et al. (2022b)* McBain et al. (2020) Smith et al. (2020) |
• In the US, 44-69% of autistic children, and in Canada, up to 80% of autistic adults, used outpatient mental health services. Inpatient mental health services were used by 2-5% of American autistic children. No equivalent data are reported for Australia • In the US, 10-22% of autistic children have an unmet need relating to mental health. This proportion is even larger in those from racial or ethnic minority groups. No equivalent data are reported for Australia • Some autistic children, particularly those from racial or ethnic minority groups, are less likely to be referred to mental health services • Psychiatry-related visits to the emergency department are 9 times higher for autistic children than for non-autistic children in the US. No equivalent data are reported for Australia • Access to mental health services significantly reduces after transition from child to adult services; only 28% of young people in UK child mental health services are referred to adult mental health services. No Australian data were identified in that review. For those who do receive mental health support in adulthood, this is more likely to be psychiatry than psychology |
• Data on Australian autistic individual’s service use and unmet service needs • Evaluation of Australian autistic individuals’ service use and unmet service needs by intersectionality (e.g., race, co-occurring conditions) • Workforce planning; current and future availability of providers to support mental healthcare needs of the increasing number of adults and older adults who identify as autistic |
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| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Technology and telehealth in mental health services | $k = 4$ Cleary et al. (2022a)* De Nocker & Toolan (2021) Ellison et al. (2021) Valentine et al. (2021) |
• The two systematic reviews focusing on telehealth for autistic individuals only identified two studies on telehealth for mental health. This is compared to over 30 studies which were identified on telehealth for behaviour and/or communication training • One study reported on the importance of using telehealth to develop a therapeutic relationship before face-to-face therapy. The second study reported on delivery of an anxiety intervention over telehealth; parents were equally satisfied in online vs. face-to-face version, despite 41% of parents of autistic children being disconnected during sessions at least once, and 6% reporting significant technological glitches • Mobile phone-based intervention improved adherence and engagement with autistic adolescents accessing services for depression |
• The acceptability and feasibility of Australian autistic people, or their family members, receiving mental health supports over telehealth, or via digital mental health supports • Co-development and evaluation of autism-specific digital mental health supports for autistic people. This would likely have to be specific for age group as well as mental health focus (e.g. prevention, intervention for each mental health condition etc.) |
* Denotes review led by Australian author.
Note: Co-development in this context means with the autistic and autism community and with people who will receive the training (i.e., educational staff)
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What we found – Mental health services |
3.7.3 Policy and guideline review
To capture a broad range of policies and guidelines at a national and/or state/territory-based level, a series of internet searches were conducted (see Appendix J-5 for more information). The policies and guidelines identified came covered a range of sectors or professions relevant to mental health services, including Australian federal government, state/territory level government, Australian Health Practitioner Regulation Agency, Australian Association of Social Workers, National Association of Aboriginal and Torres Strait Islander Health Workers and Practitioners, and Royal Australian and New Zealand College of Psychiatrists. Information within the identified policies relevant to autistic individuals or people with disability is summarised in Table 46.
Twenty-two policies and guidelines were identified, all of which were published or updated between 2008 and 2022, with 68% ($k = 15$) published in the last five years (2018 to 2023). Seventeen documents (77%) included provided some information relevant to individuals with disabilities; only 10 (45%) provided information directly relevant to autistic individuals. The policies summarised in Table 46 were distributed across national and state/territory level with nine from a national level, one from Australian Capital Territory, two from New South Wales, three from Queensland, one from Northern Territory, one from South Australia, one from Tasmania, one from Victoria, and three from Western Australia. While additional policies were considered during this review, only those that provided: a) information relevant to either autistic people or people with disability; and b) additional unique information over and above that already summarised in Table 46 were included.
Of note, there were six sectors/professions for which policies or guidelines relevant to autism were not identified during the search process. These consisted of occupational therapy, psychology, psychotherapy, pharmacy, community mental health care, and crisis support websites and phonelines. This may indicate that autism-related policies or guidelines are not available for that sector/profession, they are available only for individuals working within the profession, or they are difficult to access. The latter suggests that people working in, or interested, in this sector or profession may have difficulty accessing information that may assist in supporting autistic people.
3.7.3.1 Policy and guideline relevant to autistic people
The 10 documents that specifically discussed information pertinent to autistic individuals highlighted that within mental health services:
- Autistic people have been identified as experiencing higher rates of mental health conditions, with these mental health needs often unmet
- A range of barriers to accessing healthcare services have been identified, with policy and guidelines suggesting ways to minimise some of these barriers: – Ensure that information in communicated in an accessible way (e.g., verbal, written, Easy English, different colours or fonts) – Telehealth has been permanently incorporated into Medicare benefits scheme, supporting alternative methods to access mental health service.
- Collaboration can enhance mental health services for autistic individuals, this includes integration between federal and state services systems, and between professionals (e.g., discussing current medication and sensory consideration with treating paediatrician)
- Ensure an inclusive, person-centred approach that fosters a person’s autonomy and provides
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- an opportunity for active participation in decisions about one’s care is used
- Provide training on autism to all professionals to support (a) timely autism diagnosis; (b) mental health outcomes; and (c) accessibility to mental health services
- More research is needed to further understand the mental health needs and outcomes of autistic people
- It is pertinent to include the perspective of autistic people in discussions about mental health services to support an inclusive approach to policy development and service design.
3.7.3.2 Policy and guideline relevant to people with disability
The 17 polices and/or guidelines that provided information pertinent to individuals with disabilities revealed that within mental health services:
- Disability is the result of the interaction between an individual with impairments and the structure/processes of society. As such, the focus should be on structural and cultural factors that may negatively impact on the individual to engage in the world
- People with disability have increased rates of mental health conditions, associated with complex needs and unique obstacles to accessing care. Moreover, indigenous Queenslanders are more likely to experience disability than non-indigenous Queenslanders
- Increased rates of mental health experienced by people with intellectual disability may be associated with complex needs and unique obstacles to accessing care
- Accessibility is key to supporting mental health of people with disability. Some examples include of how this can be supported include: – Communication using a range of methods (e.g., Easy English, written, verbal) that are free of jargon – Buildings that are physically accessible, which may include considering the sensory aspect of the building – Accessible administrative processes (e.g., how follow-up appointments are made) – Considering whether the child/family may benefit from access to a trained advocate.
- Integration of services (e.g., mental health services and disability services), may improve mental health services
- Collaboration between services/professions, for example discussing current mental health plan and medication with treating doctor
- While all services should be accessible to people with disabilities, specialist inpatient and community services may be beneficial for people with intellectual disability and mental health conditions
- Improvements in data collection can inform service design and interventions for improved health outcomes
- Good practice involves: – A person-centred approach – Respecting diversity – Avoiding discrimination – Placing the interests and well-being of the patient first.
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What we found – Mental health services |
- Using evidence-based practice and quality services can support better mental health outcomes for people with disability
- Understanding of disability is important as behaviour of a person with intellectual disability may be misinterpreted as indicating mental health illness. Speaking with family members and/ or carer etc. may assist in understanding the presenting behaviour.
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FOI 24/25-1567Table 46: Policy and guideline review findings for mental health services
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| Federal | Australian Government | Australian Government Response to the Select Committee on Autism (report): Services, support and life outcomes for autistic Australians | 2022 | ✓ | ✓ | • Agree in principle to better integrate federal and state service systems, including mental health mainstream systems, developing a National Roadmap for Improving Health Services for Autistic People • Permanent telehealth arrangements have been introduced to Medicare benefits scheme • 2021-22 budget provided $1 million over two years to continue to build the capacity of mental health workforce through education, training and health promotion to better meet the mental health needs of people with developmental disability, including autism • Suggestion that a National Autism Mental Health Plan is developed which would need to align with the National Mental Health and Suicide Prevention Agreement • If a National Autism Research Framework is supported by the Australian Government, the Department of Health and Aged Care will provide input into the health and well-being priority under the framework, including a focus on evaluation of mental health interventions for autistic people • Department of Health and Aged Care has allocated $9.3 million to deliver a pilot of specialised digital services for people with complex mental health needs, including intellectual disability and autism • National Roadmap for improving the health of people with intellectual disability to support health care professionals to provide better care for people with intellectual disability. In addition to people with a diagnosed or suspected intellectual disability, the Roadmap also includes autistic people with co-occurring intellectual disability. |
| National | Commonwealth of Australia | National Mental Health Policy | 2008 | × | ✓ | • Poor mental health can cause disability, with appropriate short and long stay accommodation options developed to prevent homelessness • Integrated partnership across housing, employment, education, youth affairs, police, community and disability services. |
| National | Medical Board Ahpra | Good Medical Practice: A code of conduct for doctors in Australia | 2020 | × | ✓ | • No discrimination on the grounds of disability. |
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What we found – Mental health services |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National | Australian Association of Social Workers | AASW’s Policy Position on Disability | 2016 | × | ✓ | • Disability represents the larger and more complex interaction between an individual with impairment and the structures and processes of society. It is not “physical, cognitive, or sensory impairments that cause disability, but rather the way in which societies fail to accommodate natural aspects of difference between people”. Therefore, social workers adopt a person-in-environment approach that includes a focus on the structural and cultural factors that may negatively impact on an individual’s ability to engage with the social world • The social work profession is committed to maximising the well-being of individuals, families, groups, communities, and society. It is considered that individual and societal well-being is underpinned by socially inclusive communities that emphasise principals of social justice and respect for human dignity and human rights. These values are in complete accord with the disability advocacy movement and the United Nations Convention on the Rights of Persons with Disabilities, which both inform the NDIS. |
| National | Nursing and Midwifery Board Ahpra | Code of Conduct for Nurses | 2022 | × | ✓ | • Adopt practices that respect diversity, avoid bias, discrimination and racism, and challenge belief based upon assumption (for example, based on gender, disability, race, ethnicity, religion, sexuality, age, or political beliefs) • Nurses must use expertise to protect and advance health and well-being of people with disabilities. |
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What we found – Mental health services |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National | The Royal New Zealand College of Psychiatrists | Autism: Addressing the mental health needs of autistic people | 2022 | ✓ | × | • This is a position statement addressing significant challenges and unmet mental health needs for people on the autism spectrum • Inclusive approach is required to support equitable access and equip mainstream services to meet the needs of autistic people • Specific mental health needs of autistic people must be considered in health services, systems, and practices • Psychiatrists aim to provide the best mental healthcare to autistic people experiencing barriers to mental healthcare • More research is needed to support people diagnosed in adulthood, and to support recognition and diagnosis for people who are female and people who are linguistically diverse • Equip all health, education, social, disability, and justice services to meet the needs of autistic people in planning service delivery and outcomes, inclusive of specialised capacity for those with more complex needs • Educate and train health providers in the mental health needs of autistic people • Consider the needs of autistic people within all relevant health, mental health and disability frameworks. Integrated, multidisciplinary approaches between sectors are required • Include the voice of autistic people to support a more inclusive approach to policy development and service design • Fund research on the specific mental health needs and health outcomes of autistic people to support improved service planning and interventions and reduce health discrepancies • A lack of understanding of autism and missed or misinterpreted diagnosis leads to inadequate or inappropriate treatment. An improved understanding of autism in clinicians working in mainstream services would improve experiences and outcomes for people who are or may be autistic, particularly as referrals via mainstream services are a common pathway to adult diagnosis. |
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What we found – Mental health services |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National | The Royal New Zealand College of Psychiatrists | Intellectual Disabilities (ID): Addressing the mental health needs of people with ID | 2022 | × | ✓ | • This is a position statement rather than a policy but contains a lot of relevant information, a summary of which is below. • People with intellectual disability and mental health conditions should be considered in policy development particularly in the health, mental health, and disability sectors • Specialist inpatient and community services are required for people with intellectual disability and mental health conditions • All mainstream mental health services must be accessible to people with intellectual disability • Improved data collection is required to inform service design and interventions for improved health outcomes • People with intellectual disability require services to be delivered using a person-centred approach. |
| National | National Insurance Scheme (NDIS) | Consultation Paper: Interventions for children on the autism spectrum | 2021 | ✓ | × | All health professionals should aim to: • Foster the person’s autonomy, promote active participation in decisions about care and support self-management • Maintain continuity of individual relationships wherever possible • Ensure that comprehensive information about the nature of, and interventions and services for, people on the autism spectrum are available in appropriate language or formats including various visual, verbal and aural, easy-read, and different colour and fonts • Consider whether the child/family may benefit from access to a trained advocate. |
| National | Ahpra and National Boards | Code of Conduct | 2022 | × | ✓ | • Adopt practices that respect diversity, avoid bias, discrimination and racism, and challenge belief based upon assumption (for example, based on gender, disability, race, ethnicity, religion, sexuality, age or political beliefs) • Some patients have additional needs (e.g., those living with physical and/or cognitive disability). Good practice includes placing the interests and well-being of patient first, meeting mandatory reporting legislation about abuse and neglect, be aware of increased advocacy to ensure just access to healthcare, and when communicating treat patient with respect, encourage questions, provide information in a way the patient can understand, recognise the role of parents, carers or guardians, remain alert to patient who may be at risk. |
294 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Mental health services |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | Queensland Health | Evaluation of the Mental Health Act 2016 Implementation | 2016 | × | ✓ | • Improved patient rights and support, with Disability Advocacy Australia funded to deliver consumer and carer education • Improvement of how disability is supported in the court system. |
| State | Queensland Health | Aboriginal and Torres Strait Islander: Mental health strategy (2016-2021) | 2016 | × | ✓ | • Indigenous Queenslanders experience more ill-health and disability than non-indigenous Queenslanders • Aim to develop approach to working with a single care plan for people with mental health challenges that links mental health needs with any other community-based social and disability services they may require. |
| State | Queensland Health | Management of Patients with Acute Severe Behavioural Disturbance in Emergency Departments: Department of Health Guideline | 2016 | ✓ | ✓ | • Specific considerations should be made for patients with a disability such as “those with ID or ASD”. If possible, seek advice from patient’s treating Paediatrician/Psychiatrist or if transferring to another facility the accepting Paediatrician or Psychiatrist. Details should be sought on current medication plans, behaviour support plans, communication, plans/aides, and sensory considerations for the patients (particularly for those diagnosed with autism) • Use short clear statements which do not include medical jargon. The patient may not have the capacity to process information. For patients with a disability ensure communication aligns with the considerations in the patients’ communication plan. |
| State | NSW Health | Emergency Department Patients Awaiting Care | 2018 | × | ✓ | • Communication should be via a range of methods that accounts for the patient and family/carers understanding of information and any cultural, language, social, or disability requirements that are identified • When patients presenting to an emergency department are considered to be at risk, or who have a particular security need, a risk assessment to identify and address the identified security risks must be undertaken. These patients may include (but not limited to): patients with development disability; patients with mental health problems or “mental disorder” (sic). |
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What we found – Mental health services |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | The Sydney Children’s Hospitals Network | Non-Restrictive Health Paediatric Inpatients with Co-Morbid Intellectual Disability and/or Autism Spectrum Disorder: Practice guideline | 2019 | ✓ | ✓ | • This is a detailed document, so key parts from the document summary have been provided below • NSW Health Child and Adolescent Mental Health services are committed to the Creating Positive Cultures of Care initiative, whose aims include the reduction of seclusion and restraint practices in inpatient units. The use of seclusion and restraint with patients should only be implemented as a last resort, where the patient poses danger to either themselves or others • Individuals with mental health and co-occurring intellectual disability and/or autism can pose a particular risk of escalated behaviours, due to vulnerabilities such as poorly developed communication skills, social relating and emotion regulation deficits, intellectual handicap, limited problem-solving skills, and sensory sensitivities • Proactive management for inpatients with these developmental disabilities is therefore essential, to ensure their rights to non-coercive, least-restrictive inpatient care are promoted, upheld, and protected. |
| Territory | ACT Health Directorate, Canberra | Future Directions of Disability Health in the ACT: Phase one of the ACT disability health strategy project | 2021 | × | ✓ | When working with people with disabilities and mental health issues, the following standards would assist in improving health outcomes for all people with disabilities: • Accessible services – not just physical access but administrative access (i.e. how appointments are made and followed up) • A safe environment • Feeling respected as an individual • Having one’s privacy and confidentiality respected • Good communication – appropriate signposting, literature and written communication and complaints procedures • Good personal communication – using aids and supports as appropriate; having things explained in a way that is understood • Being listened to and having one’s opinions sought and respected • High quality, evidence-based clinical care. |
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What we found – Mental health services |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | Victoria Office for Disability | Victoria Autism Plan | 2019 | ✓ | × | • Commitment for increasing understanding of health and well-being needs, including mental health needs, for autistic Victorians • Develop an autism workforce capability framework, outlining the understanding and skills required to meet the needs of people on the autism spectrum across key workforces, including health, mental health, public transport, justice, housing, family and community services • Better access to timely diagnosis • Through the Child Clinical Specialist Initiative in all child and adolescent mental health services, continue to improve leadership and responsiveness in engaging, assessing and treating children aged up to 12 years old with severe challenging behaviours, including those on the autism spectrum • Autistic people may face barriers accessing health and mental health services due to environments interacting with sensory sensitivities and communication styles. There is a need for stronger collaboration between services and greater understanding of autism among health (including mental health and allied health) professionals. There is also a significant need for work to ensure that autistic people’s encounters with health services do not direct them to unsuitable care options and do not use health resources and programs to address underlying issues such as behaviours of concern • Consider approaches to strengthen the capability of clinical adult mental health services to recognise, assess and respond appropriately to autistic adults • Build autism competency across workforces through Department of Health and Human Services policies and guidelines to skill health and mental health workforces to respond positively to autistic Victorians • LGBTI+ autistic people should be able to draw on sage and appropriate services to meet their health, well-being and education needs • Promoting positive student well-being and mental health for autistic students is important to help them to feel less stressed and anxious, more positive about their abilities and future opportunities in education and employment, and more socially included • Funding mental health practitioners in every Victorian government secondary school campus by 2022. |
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What we found – Mental health services |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| Territory | Northern Territory Government: Territory families, housing and communities | Northern Territory Disability Strategy (2022-2023) | 2022 | × | ✓ | • Discrimination and low expectations cause people to feel bad about themselves and can damage mental health and well-being. |
| State | Western Australian Council of Social Service Inc | A Core Capability Framework: For working with people with intellectual disability and co-occurring mental health conditions | n/a | ✓ | ✓ | • Evidence that people on the autism spectrum, or other cognitive impairments, are also more at risk of developing mental health issues • Rights: People with intellectual disability, including those with a co-occurring mental health issue, and their families, carers and guardians have the right to have access to social, cultural and economic environments in relation to health and well-being • Inclusion: Required processes and structures are put in place to support access to services and the right to participate in community life by people with intellectual disability and co-occurring mental health issues • Holistic approach: People with intellectual disability and co-occurring mental health issues should be part of a person-centred approach to ensure they are supported to make choices and are in control of their care • Recovery oriented practice: People with intellectual disability and co-occurring mental health issues are supported to take responsibility for their lives respecting their experiences, expertise and strengths • Evidence-based and quality services: Best possible outcomes are sought by keeping informed of best available evidence, regularly reviewing policy and practice against standards and current legislation, and participating in professional development. |
298 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Mental health services |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | Commissioner for Children and Young People, Western Australia | Speaking Out About Autism: The views of WA children and young people with autism | 2020 | ✓ | × | • Mental health of children and young people on the autism spectrum requires close attention and they need to be adequately supported at all times to cultivate positive and enduring growth and well-being. Autistic children and their families need equitable access to information, advocacy and resources from pre-diagnosis and through all life stages. • Key theme is having access to health and mental health services that understand autism • Accessible information and practical support for children and young people and their families to link into health and mental health services in the community • Appropriate services with understanding, well-trained health and mental health professionals • Prioritised mental health support, including mechanisms that identify autistic children and young people experiencing mental health conditions (e.g., autism specific assessment). |
| State | Chief Psychiatrist of Western Australia | Chief Psychiatrist’s Guidelines | 2015 | × | ✓ | • At times the behaviour of a person with intellectual disability (ID) may be misinterpreted as indicating mental health problem and the clinician needs to ascertain the causes of the behaviour. Further information from a family member, carer, personal support person, guardian, or staff at the Disability Services Commission (DSC) may indicate that what is being observed in an exaggeration of the types of behaviour associated with the ID. DSC workers may at times be confused as to whether the behaviour indicates a mental health problem or the exacerbation of behavioural symptoms associated with ID and may quite reasonable request a mental health assessment. It should be understood that at times people with an ID may suffer from depression or psychosis (akin to dual disability) and require mental health intervention. |
| State | Government of South Australia: Well-being SA | Disability Access Plan (2020 – 2024) | 2020 | ✓ | ✓ | • Well-being SA promotes days/months of significance (e.g., autism awareness months; international days of people with disability) • Mental health problem viewed as a disability. People with such disability are included in co-design of health promotion activities and other related projects • Well-being SA promotes days/months of significance (e.g., autism awareness months; international days of people with disability). |
299 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Mental health services |
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | Tasmanian Government | Tasmanian Government Submission: Select Committee on Autism inquiry | 2020 | ✓ | × | • Tasmanian government recognised that for Tasmanians on the autism spectrum and their families, friends and carers, access to quality, timely, and appropriate supports across all key life-stages can make a positive difference to their everyday lives. Failure to provide such supports across mainstream services including education; justice; health; mental health; children and youth services and housing, has a significant economic cost, not just for Tasmanians on the autism spectrum but for Tasmania as a whole as it strives towards a fully inclusive society that values and respects all people with disability as equal and contributing members of the community. |
Note. Ahpra: Australian Health Practitioner Regulation Agency.
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What we found – Mental health services |
3.7.4 Additional information from literature reviews within other autism crc projects
Dr Kate Simpson from Griffith University has been leading Autism CRC Project “Quality of life and well-being of autistic individuals with complex support or communication needs”. This has involved a systematic review of all of the quality of life and well-being research regarding autistic individuals. Dr Simpson has provided a summary of the systematic review (please see Appendix J-6) which has been used to inform the gap analysis below.
3.7.5 Community views, research evidence, and policy/guideline alignment and gap analysis
As well as the research gaps identified as part of the research landscape mapping, the gap analysis (see Figure 8 for process) allows comparison of the current state (predominantly based upon the community views analysis but also some findings of the umbrella review and policy review) to an improved future state (based upon community views around what is working well, policy review, and some umbrella review findings).
Figure 8: Gap analysis: Current to improved future state
The gap analysis work for the mental health services section highlighted the following elements that need to be addressed in order to reduce the problems experienced by autistic people within this domain.
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What we found – Mental health services |
3.7.5.1 There is a need for autistic people to have timely and equitable access to affordable mental health services
Current state
The community views survey indicated that a common problem autistic people experience in relation to accessing mental health services is an insufficient availability or a lack of access to mental health services. Within the limited services that are available, there are long waiting lists (many services are reported to have closed waitlists), a lack of skilled therapists, and fees are too expensive. Whilst it is recognised that the insufficient availability of services may be impacting both autistic and non-autistic Australians, a lack of services and therapists is particularly impactful for the autistic community given the research showing that more autistic people (90.5%) than non-autistic people (12 to 16%) experience mental health challenges (see Salazar et al., 2015; doi.org/ 10.1007/ s10803-015-2361-5). Additionally, the community survey also identified autism-specific barriers to accessing mental health services, including some people reporting a preference for non-face-to-face therapy, and people being denied access to a service because they are autistic, which further exacerbates the challenges in accessing services.
The research reviews confirm the perspectives within the community views, stating that many autistic people and family members of autistic people report being excluded from services due to their autism diagnosis, “falling between the cracks” of mental health and disability services. The reviews also document that long waiting lists and a lack of spaces in mental health services prevent autistic people from accessing services. The research within the reviews further concludes that many mental health practitioners do not feel confident in supporting the needs of autistic people, which may be a contributing factor to autistic people being denied access by services. Additionally, non-Australian research shows that some autistic children, particularly those from racial or ethnic minority groups, are less likely to be referred for mental health support.
Improved future state
Multiple policies within the policy review state that individuals in mental health services cannot be discriminated against because of their disability or diagnosis. The Royal Australian and New Zealand College of Psychiatrists position statements on addressing the mental health needs of autistic people (2022) indicate the need for an inclusive approach to mental health services to support equitable access and to equip “mainstream” services to meet the needs of all autistic people. Their position statement on addressing the mental health needs of people with intellectual disability (2022) also states that “mainstream” mental health services must be accessible to people with an intellectual disability (a co-occurring condition for a proportion of autistic people). Whilst comments in the community views survey recognised that NDIS funding has been beneficial for accessing mental health supports, respondents indicated that affordable mental healthcare and increased, easier to access funding for mental health supports would assist in reducing the challenges that autistic people face when trying to access mental health services.
Steps that can be taken to move from the current to the improved future state include:
- More training places for mental health professionals (including neurodivergent mental health professionals) with an interest or focus on autism and neurodiversity to increase workforce availability
- Training and professional development to increase mental health professionals’ knowledge
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What we found – Mental health services |
- and competence to support autistic individuals (discussed further below)
- Collection and evaluation of data on Australian autistic individuals’ service use and unmet needs, explored by intersectionality, to identify those who may be at increased risk of not accessing mental health services. This knowledge could be used to facilitate the co-development of resources to support any such group to access services, including information on the services that are available, how to access these services, and who can/how to access funding for mental health supports
- Government and/or professional bodies providing guidance on inclusive practice and how to ensure professionals practise within their competency without discrimination or denying people access to services based on their neurotype
- Co-designed autism-informed pathways within “mainstream” mental health services, akin to the PEACE pathway within the National Health Service (NHS) eating disorder service. This offers autism-informed therapies and supports within a standard (“mainstream”) service
- Co-designed digital mental health supports for the autistic community. These could aim to prevent the development of mental health conditions (accessed proactively) and/or prevent further development of mental health conditions (e.g., which could be accessed while on waiting lists or trying to find a therapist).
3.7.5.2 There is a need to improve the level of autism knowledge and understanding of professionals working in mental health services, and for wider access to professionals providing neurodiversity affirming approaches.
Current state
Almost one in four people who completed the mental health section of the community views survey highlighted that mental health professionals’ lack of knowledge of autism (or broader neurodiversity), its presentation, and its impact across the lifespan as a problem for autistic people when using, or trying to access mental health services. Respondents also highlighted that the misdiagnosis of autism as a mental health problem, along with mental health professionals’ lack of knowledge of conditions that co-occur with autism, as additional problems that autistic people experience when using or trying to access mental health services.
The research landscape mapping results align with the community views. This highlighted that one of the most common barriers for autistic people accessing mental health services was the practitioner/professionals’ lack of autism knowledge. Many professionals who support autistic people with their mental health have limited knowledge of autism, with one study reporting that some professionals get their knowledge of autism through personal connections or the media, rather than through training. There was limited Australia-specific research and no research within the reviews evaluated knowledge of mental health conditions in autistic people.
Improved future state
The community views survey highlighted that mental health services work well for autistic people when therapists are knowledgeable and/or experienced in autism. Aligning with this, the most frequently suggested solution to the problems autistic people face within mental health services (within the community views survey) was increasing the autism knowledge of professionals within
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What we found – Mental health services |
mental health services through training.
Described in the policy review, multiple policy documents, including the Royal Australian and New Zealand College of Psychiatrists position statement “Addressing the mental health needs of autistic people” (2022) and the Victorian Autism Plan, indicate the need to educate and train health care providers in the mental health needs of autistic people. However, none of the other policies reviewed suggested or mandated autism training for professionals providing mental health services.
Steps that can be taken to move from the current to the improved future state include:
- Co-creation of a core capabilities framework for mental health professionals supporting autistic people (e.g., see the UK’s Core Capabilities Framework for Supporting Autistic People commissioned by Health Education England). This could inform training such as those described below
- Co-creation of evidence-based autism-specific training that is relevant and accessible to professionals providing mental health services. The effectiveness of this training could be supported by relevant federal and state policymakers suggesting or mandating completion of such training within policy. This could include training during initial courses as well as being included within annual professional development training offerings
- Co-development of specialised training for professionals whose role would benefit from more specific knowledge of autism, such as those supporting autistic people with more complex communication or support needs (e.g., see the National Health Service Oliver McGowan Mandatory Training on Learning Disability and Autism).
3.7.5.3 There is need for mental health services that provide accommodations and supports to enable autistic people to access their services
Current state
The community views survey highlighted that sessions and strategies offered by mental health professionals were not tailored to autistic people. This includes a lack of accommodations for autistic people’s communication, language, and communication styles or preferences. Of note, this was reported by 10% of autistic people but by only 3% of mental health professionals. As with other domains, the community views survey suggested many potential reasons for this, including a lack of autism knowledge, a lack of training, a lack of funding, and/or resource- and time-constraints of those working in mental health services.
The research review identified that many autistic people feel that mainstream mental health services are unlikely to meet their needs. Practitioners not adapting practices or supports to autistic clients was identified as a barrier to autistic people accessing mental health services. The reviews also concluded that mental health practitioners need to adapt their approaches to support autistic clients, but due to a lack of evidence and training, any adaptations or accommodations may be inconsistent and ad hoc.
Additionally, the community views survey highlighted that autistic people have problems accessing mental health services due to processes and systems, including challenges navigating systems and having to book appointments by telephone. The research reviews align with this, with barriers to
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What we found – Mental health services |
accessing mental health supports including unclear referral access or pathways.
The policy review highlighted that telehealth arrangements are now being permanently supported. However, the research reviews show that little is known about feasibility, acceptability, and efficacy of telehealth and digital health supports to support the mental health of autistic people.
Improved future state
The policy review highlights that the specific mental health needs of autistic people should be considered in services, systems, and practices (The Royal Australian and New Zealand College of Psychiatrists position statements, 2022). The NDIS consultation paper on Interventions for children on the autism spectrum (2021) states that information should be presented in appropriate language or formats and the Ahpra Code of Conduct (2022) states that professionals should provide information in a way that the [autistic person] can understand. There is also a future commitment to deliver a pilot of specialised digital services “for people with complex mental health needs, including intellectual disability and autism” within the Australian Government response to the Select Committee on Autism (report): Services, support and life outcomes for autistic Australians.
The community views identified that mental health services work well for autistic people when there is support from family, friends, and the autistic/neurodivergent community. There was also recognition of the importance of safe, trusting therapist-client relationships, and of therapists who have good therapeutic skills (e.g., flexible, compassionate). The survey also highlighted that mental health services work well for autistic people when professionals offer a range of supports or therapies to promote well-being in autistic people, and when neurodiversity affirming or strengths-based approaches are available.
Steps that can be taken to move from the current to the improved future state include:
- Co-development of guidelines or recommendations of accommodations that mental health practitioners should offer to autistic people before, during, and after accessing mental health services. The guidelines or recommendations need a pathway to dissemination so that the information is provided to all practitioners which enables the supports or accommodations to be available and offered across a range of mental health service settings
- Co-development of resources, supports, and models of service for autistic people to help enhance their understanding of mental health and mental health services which can be accessed prior to (and while) accessing mental health services. Given that the community shared how important their support network can be when accessing mental health services, this may also include resources for members of the support network
- Additional evidence and research on effective strategies to support the mental health of autistic people. In order to support the broad range of communication preferences of autistic people, this evidence should go beyond face-to-face therapies to also consider digital resources, digital therapies, or less formal supports (e.g., online chat functions) co-developed with autistic people, for autistic people. Data on “what works” may also require collaboration with therapists working in clinical practice to identify new practices or approaches being used (e.g., neurodiversity affirming practices) and co-designing methods of evaluation of such practices.
305 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Mental health services |
3.7.5.4 There is a need to understand more about why autistic people experience elevated mental health problems and what can be done, outside of therapy, to reduce this risk
Current state
The research highlights that autistic people access mental health services more often than non-autistic people; this is not just limited to therapy. American data also show that psychiatry-related emergency department visits are nine times higher for autistic than for non-autistic children.
Policies recognise that specific intersectionalities and particular environments may lead to autistic people being more likely to develop mental health problems, but there is at present insufficient longitudinal research on the mental health trajectories of autistic people to identify autism-specific risk factors for developing mental health challenges. The research is not sufficiently developed to inform services on the environmental factors, including societal attitudes or acceptance of autism, which lead to or help prevent mental health problems in autistic people.
Improved future state
Policies state the need for mental health professionals to meet the recommendations of providing “the best mental healthcare to autistic people experiencing barriers to mental healthcare” and “maximising the well-being of individuals, families, groups, communities, and society”. The community views consistently highlight the need for more services, more therapists, and more funding so as to ensure there are sufficient services to support the mental health needs of autistic people in Australia.
Steps that can be taken to move from the current to the improved future state include:
- Longitudinal co-developed research on the mental health trajectories of autistic people to identify autism-specific risk factors for developing mental health challenges. This should include environmental factors, including societal attitudes or acceptance of autism, which lead or help to prevent mental health problems in autistic people
- Co-development and evaluation of community-based initiatives to enhance public knowledge and acceptance of autism, which in turn lead to less negative experiences (e.g., bullying) which impact autistic people’s mental health. This might include initiatives in schools, workplaces, and community groups, or through supporting accurate representation of autism within media. Any such initiative should cover the diversity of the autistic community by (for example) including autistic people from the LGBTQIA+ and culturally and linguistically diverse communities.
306 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Mental health services |
3.8 Physical health services
3.8.1 The “1,000 Insights” community views survey
A total of 606 respondents answered at least one of the questions on physical health services. This included 253 autistic people, 382 families or carers of autistic people, and 159 medical professionals and allied health professionals. The 10 most frequently reported responses (where applicable) are reported within this section. However, the full list of response codes for each question within the physical health services domain is available in Appendix K-1.
The tables for each question describe the response categories (with example participant responses) in order from the most frequently reported to the least frequently reported. For each category, percentages are provided to indicate the proportion of a respondent group whose response reflected the specific category. These groups are: (a) the entire sample (i.e., everyone), (b) autistic people, (c) family members/caregivers of autistic people, (d) medical or allied health professionals, and (e) all respondents who are not represented in one of these groups.
3.8.1.1 Problems experienced by autistic people when using, or trying to access, physical health services
A total of 606 respondents opted to answer this question on using, or trying to access, physical health services. This included 253 autistic people and 382 family members or carers of autistic people. The problems experienced were coded into 16 categories, which fall under the following six broad areas:
- Physical healthcare professionals’ autism knowledge, skills, and practice
- Logistics and process of accessing services
- The physical environment of healthcare settings
- Communication between autistic people and those working in physical health services
- Cost and finance
- Fear and lack of trust when accessing services.
Table 47 ranks the 10 most commonly reported problems that autistic people experience in relation to accessing physical health services. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns reports the proportion of specific respondent groups that identified this as a problem. Note that respondents often identified within multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the total of the subgroups will exceed the total number of all respondents.
Of note is that these data show that approximately:
- Almost 1 in 4 respondents highlight a problem with the level of knowledge of autism of people (providers and non-providers) working in the physical health services.
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What we found – Physical health services |
- Nearly 1 in 4 respondents highlight a problem with long waiting lists to access physical health services.
- Almost 1 in 5 respondents highlight that health professionals are reluctant to adapt practices or provide accommodations/supports for autistic individuals or to see autistic clients.
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What we found – Physical health services |
Table 47: 10 most frequently reported problems experienced by autistic people in relation to physical health services
| Rank | Problems experienced by autistic people in relation to physical health services and sample quotes from responses | Direct insight | All respondents $N = 606$ |
Autistic people $n = 253$ |
Family member or caregiver of autistic people $n = 382$ |
Medical professionals and allied health professionals $n = 159$ |
Other respondent groups* $n = 260$ |
|---|---|---|---|---|---|---|---|
| 1 | Staff in healthcare settings (providers and administrative staff) have a poor understanding or knowledge of autism, how it presents in different people or contexts and how it impacts the experience of healthcare settings (e.g., outdated knowledge of autism; lack of knowledge of how autism impacts the experience of healthcare settings) |
“There is no indication at any GP or Health Care service that I have seen that they either specialise in or are experienced and trained to help autistic people. GP’s and other health professionals do not know how to deal with autistic people.” (ID 915) | 23% | 23% | 24% | 29% | 21% |
| 2 | Long waiting lists to access physical health services (e.g., long waiting time to access diagnostic, generalised, and specialised services) |
“Appointment waitlists are getting so long that by the time we get in, the problem is too far gone, already fixed, or we just don’t want to go anymore because they don’t care about us so why should we?” (ID 153) “There is nothing available in the regions. Everything is booked out for 12+ months.” (ID 570) |
23% | 13% | 26% | 25% | 20% |
| 3 | Health professionals’ reluctance to adapt practices or provide accommodations/ supports for autistic individuals (e.g., inflexibility, one-size-fits-all, lack of neurodiversity-affirming care) |
“Hospitals do not accommodate for the needs of people with autism. Quote from a hospital employee which identifies as disability friendly and has a disability liaison officer, ‘they just have to suck it up” (ID 1172) | 19% | 17% | 23% | 15% | 17% |
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What we found – Physical health services |
| Rank | Problems experienced by autistic people in relation to physical health services and sample quotes from responses | Direct insight | All respondents $N = 606$ |
Autistic people $n = 253$ |
Family member or caregiver of autistic people $n = 382$ |
Medical professionals and allied health professionals $n = 159$ |
Other respondent groups* $n = 260$ |
|---|---|---|---|---|---|---|---|
| 4 | The sensory elements of physical health services or settings (including waiting rooms and emergency departments) are not supportive for autistic people, sometimes leading to sensory overwhelm (e.g., crowded, bright and noisy waiting rooms) |
“Attending doctors’ appointments is difficult. Waiting rooms are a sensory nightmare. [We are] often left waiting for a long time for appointments in waiting rooms then my daughter is over stimulated by the time her appointment is due to start, leading to erratic behaviour and meltdowns.” (ID 30) “Hospitals are sensory nightmares. I went through chemotherapy for a year in sensory agony and no-one thought to turn off the fluorescent lights.” (ID 1163) |
19% | 19% | 21% | 21% | 22% |
| 5 | Physical healthcare providers dismissing or not believing the reports of autistic people or their family members (including not believing a person is autistic) (e.g., dismissing symptoms or requests) |
“They don’t listen when we speak. If we say we are hurting, they think we are lying.” (ID 935) “My diagnosis of autism is commonly ignored, minimised or dismissed. I am then either judged as a liar, fraud or a difficult patient or I get spoken to as if I have intellectual disability as well.” (ID 1436) |
16% | 26% | 15% | 14% | 17% |
| 6 | Differences or difficulties with communication, including autistic people experiencing challenges with describing their experiences, having to frequently repeat information to providers, and physical health providers not presenting information in a way that is accessible to autistic people | “They are worried about having to talk about their feelings. This is hard to articulate.” (ID 255) | 16% | 17% | 16% | 12% | 15% |
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What we found – Physical health services |
| Rank | Problems experienced by autistic people in relation to physical health services and sample quotes from responses | Direct insight | All respondents $N = 606$ |
Autistic people $n = 253$ |
Family member or caregiver of autistic people $n = 382$ |
Medical professionals and allied health professionals $n = 159$ |
Other respondent groups* $n = 260$ |
|---|---|---|---|---|---|---|---|
| 7 | Lack of health professionals and services, and disparity based on location (i.e., regional and rural) (e.g., limited number of allied health and medical professionals; no services for particular age group/gender) |
“Not enough psychologists/Speech Pathologists/OT to assess for ASD. Not enough psychologists/Speech Pathologists/OT to treat/manage social skills, sensory overwhelm and anxiety for those with ASD.” (ID 477) | 14% | 8% | 14% | 17% | 17% |
| 8 | Services are too expensive to access | “It literally costs thousands every year. Even the reports to access the NDIS cost us over $10K combined (2 children). How do poor families access NDIS reports and ongoing medical care? I’m guessing many just miss out.” (ID 1112) | 15% | 13% | 14% | 9% | 13% |
| 9 | Difficulties with the process to access and physically attend health services (e.g., organising and understanding forms, service availability/options, paperwork and appointments; transport) |
“The amount of paperwork and hoops that the autistic person needs to successfully navigate in order to get help discourages people from trying.” (ID 195) | 12% | 12% | 10% | 13% | 15% |
| 10 | Adjustments or accommodations not offered, or system not taking into account needs or preferences of autistic people (e.g., appointments or therapies not autism-friendly; options for appointments [telehealth or in person]; and the process of arranging appointments or communicating with staff outside of appointments) |
“Everything requires a phone call - that’s just not accessible for most autistic or neurodivergent people.” (ID 1494) | 12% | 15% | 11% | 11% | 11% |
Note. *all other groups that have not been identified separately
311 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
3.8.1.2 Factors causing the problems experienced by autistic people when accessing, or trying to access, physical health services
A total of 536 respondents opted to answer this question on using, or trying to access, physical health services. This included 216 autistic people and 340 family members or carers of autistic people. The factors that respondent felt were causing or leading to the problems experienced by autistic people when accessing physical health services were coded into 16 categories. These categories fell under nine broad areas:
- Education and training of healthcare professionals
- Healthcare professionals’ factors including knowledge of autism and skills
- Cost and finance
- Availability of, and access to, physical healthcare services
- Healthcare professionals’ approach and practice when working with autistic people
- Government decisions and policy
- Set up of physical healthcare services and systems within services
- Physical and sensory environment of physical healthcare settings
- Autistic characteristics or communication profile
Table 48 ranks the 10 most commonly reported factors that respondents felt were causing the problems that autistic people experience in relation to accessing physical health services reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.
Importantly, these data show that approximately:
- 1 in 4 respondents stated that the problems were due to insufficient training provided to healthcare providers or insufficient funding available to provide this training.
- 1 in 4 respondents reported that the problems were due to staff in healthcare settings having insufficient knowledge of autism.
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What we found – Physical health services |
Table 48: 10 most frequently reported factors causing the problems experienced by autistic people in relation to accessing physical health services
| Rank | Factors causing the problems experienced by autistic people in relation to physical health services and sample quotes from responses | Direct insight | All respondents $N = 536$ |
Autistic people $n = 216$ |
Family member or caregiver of autistic people $n = 340$ |
Medical professionals and allied health professionals $n = 143$ |
Other respondent groups* $n = 231$ |
|---|---|---|---|---|---|---|---|
| 1 | Lack of funding for autism education, training, and upskilling of physical healthcare professionals (e.g., lack of training within undergraduate and postgraduate level; insufficient ongoing professional development and autistic-led training) |
“There is also little to no training about Autistic people in most standard Health care services settings, and this training. As an OT we did one lecture in one subject once. There are still lots of old myths/ stigma in the general medical and allied health fields.” (ID 762) | 26% | 26% | 25% | 32% | 28% |
| 2 | Staff in healthcare settings (including administrative settings) have a lack of knowledge or understanding of autism/neurodiversity, diversity of presentations, and how autism/neurodivergence may impact physical health needs or symptoms (e.g., pain) (e.g., lack of understanding individual needs; lack of understanding of autism; outdated knowledge) |
“Their knowledge of autism is based on dated young male stereotypes from a particular part of the spectrum. Health care services know little current information about older, late diagnosed autistic women like me. They have no concept of the depth of trauma caused by being an undiagnosed autistic women living in a neurotypical world for 60 years and generally think I’m a sook and take none of my physical medical issues seriously.” (ID 1436) | 24% | 32% | 24% | 20% | 28% |
| 3 | Lack of funding/resources and/or difficulty accessing these supports (including the high costs of healthcare) | “Less doctors are bulk-billing these days, so autistic (as well as neurotypical) people are not seeking medical help when they need it.” (ID 1212) | 23% | 18% | 24% | 22% | 25% |
313 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
| Rank | Factors causing the problems experienced by autistic people in relation to physical health services and sample quotes from responses | Direct insight | All respondents $N = 536$ |
Autistic people $n = 216$ |
Family member or caregiver of autistic people $n = 340$ |
Medical professionals and allied health professionals $n = 143$ |
Other respondent groups* $n = 231$ |
|---|---|---|---|---|---|---|---|
| 4 | Insufficient number of available healthcare professionals (e.g., lack of professionals entering the field; lack of staff retention and incentives; a lack of university placements to train new professionals) |
“Not enough allied health professionals available to be responsive. Since the introduction of NDIS people with a plan expect/are entitled to regular allied health intervention” (ID 702) | 17% | 10% | 18% | 15% | 18% |
| 5 | Healthcare professionals demonstrating a lack of understanding, empathy, patience, care, and acceptance for autistic people (e.g., professionals showing discrimination and stereotyping of autism) |
“Egos - people just don’t care, and don’t [have] the time to understand, or WANT to get to the bottom of the issue, to actually then offer any real assistance.” (ID 147) “Discrimination. You are treated like damaged goods. You are considered not worth saving. Even told you are the responsibility of DHHS [Department of Health and Human Services]. You are particularly devalued if you are autistic, nonverbal and have cognitive delays.” (ID 878) |
10% | 13% | 12% | 7% | 10% |
| 6 | Neurotypical/majority needs prioritised, ableism, and lack of neurodiversity-affirming practice | “Because people expect everyone to look around and behave like everyone else… ASD are not typical and for the majority of lazy humans makes them too much effort. It is easy when everyone is the same.” (ID 469) | 10% | 13% | 11% | 8% | 11% |
314 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
| Rank | Factors causing the problems experienced by autistic people in relation to physical health services and sample quotes from responses | Direct insight | All respondents $N = 536$ |
Autistic people $n = 216$ |
Family member or caregiver of autistic people $n = 340$ |
Medical professionals and allied health professionals $n = 143$ |
Other respondent groups* $n = 231$ |
|---|---|---|---|---|---|---|---|
| 7 | Lack of government support and guidance (e.g., a lack of autism-specific research; lack of guidelines/policy; increased red tape and bureaucracy) |
“Stronger rules, regulations and ethics needs to be implemented to eradicate the way funding is brutally misappropriated by physicians and service providers.” (ID 515) | 10% | 10% | 8% | 11% | 10% |
| 8 | A system with overwhelmed and overworked staff, time pressures, and insufficient resources (e.g., being rushed; no time for extra accommodations) |
“Clinical staff are too busy and the health system overloaded to meet the sometimes complex health needs of an autistic person.” (ID 859) | 9% | 7% | 9% | 8% | 7% |
| 9 | Demand for health system exceeds supply, including increase in the prevalence of autism diagnoses and an increase in healthcare needs | “The medical system is so swamped, sometimes I think they make it hard on purpose because they want fewer patients!” (ID 479) “The health system is under great strain and is not able to keep up with increasing physical health needs in GP clinics and hospitals, let alone other more specialist services” (ID 1154) |
8% | 5% | 9% | 10% | 8% |
| 10 | Insufficient number of professionals or services with an interest/expertise in autism (e.g., a lack of autistic professionals or those with lived experience; a lack of specialists in rural areas) |
“A number of graduate therapists are working for NDIS service providers with people who require skill[ed] professionals but they are not adequately experienced or trained which is a disadvantage to the Autistic person.” (ID 1006) | 8% | 6% | 7% | 8% | 7% |
Note. *all other groups that have not been identified separately
315 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
3.8.1.3 Factors that could prevent or reduce the problems experienced by autistic people when accessing, or trying to access, physical health services
A total of 515 respondents opted to answer this question on using, or trying to access, physical health services. This included 216 autistic people and 340 family members or carers of autistic people. The factors that respondents identified as preventing or reducing the problems experienced by autistic people when accessing physical health services were coded into 13 categories. These categories fall under the following seven broad areas:
- Education and training of healthcare providers to enhance knowledge of autism and skills for supporting autistic people
- Availability of, and access to, physical healthcare services
- Cost and finance
- Government decisions and policy
- Communication needs, preferences, and options
- Physical and sensory environment of physical healthcare settings
- Set up of physical healthcare services and systems within services.
Table 49 ranks the 10 most commonly reported factors that respondents indicated could prevent or reduce the problems that autistic people experience in relation to accessing physical health services reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.
Importantly, these data show that there was a clear, predominant factor highlighted by respondents:
- 2 out of every 5 respondents identified training in autism as a factor that could prevent or reduce the problems experienced by autistic people when accessing physical health services.
316 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
Table 49: 10 most frequently reported factors that could prevent or reduce the problems experienced by autistic people in relation to accessing physical health services
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to accessing physical health services and sample quotes from responses | Direct insight | All respondents $N = 515$ |
Autistic people $n = 216$ |
Family member or caregiver of autistic people $n = 340$ |
Medical professionals and allied health professionals $n = 142$ |
Other respondent groups* $n = 230$ |
|---|---|---|---|---|---|---|---|
| 1 | Increase (access to) education, training, and upskilling programs for healthcare professionals and administrative staff about autism, characteristics, and health impacts (e.g., mandatory onboarding; autistic informed/delivered training; and university level training) |
“There needs to be greater education about Autism for everyone working in physical healthcare services settings, and this education needs to be designed or co-designed with Autistic people.” (ID 290) | 45% | 51% | 43% | 49% | 47% |
| 2 | Increase the number of healthcare professionals and health services available (e.g., incentives to increase rural/regional service; broadening scope of practice for health professionals) |
“Train more doctors. Make it easier to transition to medicine later in life (e.g., scientists with PhD/pharmacists/vets could do a specialised MD training to build up the workforce.” (ID 578) “Incentivising healthcare professions such as speech and occupational therapy.” (ID 1128) |
21% | 13% | 22% | 22% | 23% |
| 3 | Increase funding/resources and/or affordability of health services across the lifespan (e.g., increasing access to funding; increasing bulk-billing services; reviewing funding systems such as NDIS) |
“We need funding for medical expenses. NDIS won’t cover my medical conditions, even though they are known to be linked to my neurodivergence. I am not a list of diagnoses with symptoms that can be easily categorised, I am a whole person and everything interconnects.” (ID 70) “Flexibility in the Medicare funding system so that autistic patients had the capacity to access health services in the manner most suited to their needs.” (ID 1149) |
19% | 17% | 20% | 18% | 18% |
317 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to accessing physical health services and sample quotes from responses | Direct insight | All respondents $N = 515$ |
Autistic people $n = 216$ |
Family member or caregiver of autistic people $n = 340$ |
Medical professionals and allied health professionals $n = 142$ |
Other respondent groups* $n = 230$ |
|---|---|---|---|---|---|---|---|
| 4 | Government reform, support, and guidance (e.g., investment in research and services; guidelines, policy and regulations) |
“Inclusion of autism in policy, guidelines and pathways so that autism is considered at all levels of health service system.” (ID 1068) “Looking at how policy and practice is not meshing and figuring out to streamline this more effectively, so it meets the needs of autistic individuals more effectively.” (ID 1463) |
14% | 14% | 15% | 13% | 16% |
| 5 | Increase access and use of physical healthcare services for autistic people and their families through the provision of accommodations, flexible access options, and supports (e.g., increased flexibility; and increased access to supports) |
“An autistic person may appreciate being first to be seen (or sometimes last) - quieter, less people. [Having] a person at the front door who can assist others [with] directions, wheelchair, toy, drink etc. Someone who has a general understanding and helpful nature. This person might wear the same uniform, apron etc each day and is easy to identify.” (ID 452) | 14% | 14% | 15% | 10% | 13% |
318 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to accessing physical health services and sample quotes from responses | Direct insight | All respondents $N = 515$ |
Autistic people $n = 216$ |
Family member or caregiver of autistic people $n = 340$ |
Medical professionals and allied health professionals $n = 142$ |
Other respondent groups* $n = 230$ |
|---|---|---|---|---|---|---|---|
| 6 | Increase communication options to improve access to healthcare and access to information about healthcare (e.g., web-based booking systems; text-based communication; opting in or out of telehealth [i.e., not assuming it is preferred or unpreferred]) |
“It should be mandatory that Autistic patients be able to communicate with clinics and healthcare professionals in ways that they prefer. No-one would ask a blind person to read a form, after all.” (ID 290) “Always have an online booking system for all health care services. This should be mandatory due to the fact some autistic people are not getting the health care they require or delaying accessing health care due to having to call for an appointment. In this technological age, this is a very easy solution to this problem.” (ID 873) |
12% | 17% | 11% | 13% | 14% |
| 7 | Enhance the therapeutic skills and awareness of healthcare professionals to support their work with autistic clients (e.g., acceptance; showing empathy and patience) |
“More education and training on ND [neurodivergent]-affirming practices for all health professionals. The training needs to be affordable and accessible (e.g. online, self-paced as well as in-person) and is provided by health professionals who are ND.” (ID 385) | 11% | 12% | 11% | 11% | 9% |
| 8 | Create sensory-friendly physical health services or settings, including training on how overwhelming these environments can be and impact on their appointment (e.g., create sensory-friendly waiting rooms and emergency departments) |
“More sensory friendly design choices (reduced lighting, quieter medical device notification systems) and accommodations (sensory friendly/quiet spaces…) considered for autistic patients.” (ID 1051) | 9% | 11% | 9% | 9% | 11% |
319 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
| Rank | Factors that could prevent or reduce the problems experienced by autistic people in relation to accessing physical health services and sample quotes from responses | Direct insight | All respondents $N = 515$ |
Autistic people $n = 216$ |
Family member or caregiver of autistic people $n = 340$ |
Medical professionals and allied health professionals $n = 142$ |
Other respondent groups* $n = 230$ |
|---|---|---|---|---|---|---|---|
| 9 | Actively employ, consult, and collaborate with neurodivergent practitioners, support workers, advocates, and those in leadership/decision-making roles (e.g., consult with autistic people when designing or developing services; services actively employing neurodivergent practitioners, support workers, advocates) |
“Co-design with autistic people so needs are recognised and responded to in planning, implementation and delivery of services. Service reviews by autistic people, to guide change or recognise achievements.” (ID 677) “Have more autistic doctors and nurses (medical professionals), and more autistic people include on the boards of hospitals and health services.” (ID 935) |
8% | 10% | 8% | 7% | 10% |
| 10 | Provide support and education to individuals and families to improve health experiences and access (e.g., having support workers and advocates available; preparing autistic individuals for healthcare visits and procedures) |
“Where possible provide resources to prepare autistic people for procedures that may be overwhelming, such as blood collection, having a cannula put in, x-rays, CT, MRI, Mammograms etc. these resources could be written in consultation with autistic people.” (ID 1322) | 8% | 7% | 8% | 11% | 9% |
320 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
3.8.1.4 Factors that are working well, or have worked well, for autistic people in relation to physical health services
A total of 390 respondents opted to answer this question on using, or trying to access, physical health services. This included 161 autistic people and 257 family members or carers of autistic people. The factors that, when available, are reported to be working well, or have worked well, for autistic people in relation to accessing physical health services were coded into seven categories, which fall under seven broad areas:
- Nothing
- When health providers have knowledge of autism, related skills, and approaches to support working with autistic people
- When services are affordable (including Medicare and NDIS plans)
- When there is sufficient availability of, and access to, physical healthcare services
- When communication needs, preferences, and options are considered
- When the physical and sensory environment of physical healthcare settings is supportive of autistic people
- When there is increased access to comprehensive diagnosis and subsequent information to inform support.
Table 50 ranks the 10 most commonly reported factors that respondents reported to be working well, or have worked well, for autistic people in relation to accessing physical health services. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns state what proportion of specific respondent groups reported this as a problem.
Importantly, these data show that approximately:
- 1 in 5 respondents did not feel that anything was working to support autistic people in accessing physical health services.
- 1 in 5 stated that when they do find the right physical health provider (who was often described as knowledgeable about autism, understanding, caring, patient, and/or non-judgemental), physical health services work well.
321 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
Table 50: 10 most frequently reported factors that are working well, or have worked well, in relation to autistic people accessing physical health services
| Rank | What is working well, or has worked well, in relation to autistic people accessing physical health services and sample quotes from responses | Direct insight | All respondents $N = 390$ |
Autistic people $n = 161$ |
Family member or caregiver of autistic people $n = 257$ |
Medical professionals and allied health professionals $n = 105$ |
Other respondent groups* $n = 166$ |
|---|---|---|---|---|---|---|---|
| 1 | Nothing/not a lot | “Nothing. Everything is designed to be difficult and you give up before you achieve what you set out to most of the time.” (ID 88) “Nothing about the current system is working well. Nothing at all.” (ID 318) |
22% | 28% | 22% | 17% | 24% |
| 2 | When you find the right physical health provider for you, who was often described as knowledgeable about autism, understanding, caring, patient, and non-judgemental | “It’s luck of the draw. Every now and then I come across someone who is gentle, understanding and genuinely wants to know my needs or my children’s needs.” (ID 1081) “I once had a nurse get angry at me for having a meltdown within hours after the birth of my baby! But … one nurse pulled me aside to tell me she understands, her nephew is autistic. This helped. People in the industry expressing their understanding from a personal perspective (in an appropriate and professional way!) works wonders to help me feel safe and supported.” (ID 1251) |
18% | 21% | 20% | 10% | 18% |
| 3 | When NDIS plans and funding are approved for health supports (e.g., helpful NDIS coordinators can improve access to services; reduces financial burden on families) |
“NDIS has been helpful to support access to allied health services for my son.” (ID 384) | 14% | 9% | 12% | 19% | 13% |
322 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
| Rank | What is working well, or has worked well, in relation to autistic people accessing physical health services and sample quotes from responses | Direct insight | All respondents $N = 390$ |
Autistic people $n = 161$ |
Family member or caregiver of autistic people $n = 257$ |
Medical professionals and allied health professionals $n = 105$ |
Other respondent groups* $n = 166$ |
|---|---|---|---|---|---|---|---|
| 4 | When healthcare providers proactively ask about and provide alternative/flexible access, accommodations, and/or support for autistic individuals (e.g., longer appointments; more flexibility with appointments; support people attending; home visits) |
“Being allowed advocates with them even as adults [and] longer consultation times awareness and acceptance.” (ID 773) “I have only had one positive experience and the hospital worked with us and allowed the assistance dog into pre-op as well.” (ID 1061) |
13% | 9% | 16% | 13% | 16% |
| 5 | When supports are provided that prepare autistic individuals for accessing healthcare services or initiatives/supports that help access to health services (e.g., preparation resources for autistic individuals; access to support workers; educated carers/families; supports for families) |
“Visiting the dentist often for very short appointments to get better at opening the mouth for viewing and touching the teeth.” (ID 942) “Support workers funded through the NDIS to assist with access, physical access, and mental preparation and capacity building for the appointment.” (ID 998) |
10% | 8% | 11% | 9% | 11% |
323 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
| Rank | What is working well, or has worked well, in relation to autistic people accessing physical health services and sample quotes from responses | Direct insight | All respondents $N = 390$ |
Autistic people $n = 161$ |
Family member or caregiver of autistic people $n = 257$ |
Medical professionals and allied health professionals $n = 105$ |
Other respondent groups* $n = 166$ |
|---|---|---|---|---|---|---|---|
| 6 | When there are increased communication options to improve access to, and information about, healthcare (e.g., web-based booking systems; option of telehealth; non-verbal communication options) |
“Telehealth appointments meant I was able to speak to a GP and turn my life around.” (ID 154) “I have had the option at a doctors of online booking with a comment section so that I could put in the reason that I was making the appointment. It was really helpful because it meant that when I got there the doctor already had the reason for my visit in front of them. I didn’t have to try and remember all the details and then get them across while I was stressed and overwhelmed.” (ID 323) |
10% | 12% | 10% | 10% | 12% |
| 7 | Healthcare providers having an awareness and knowledge of autism, the characteristics of autism (including sensory needs), and different presentations (including the presentation of autism in women or girls) | “There are more practitioners now who understand autism and women. I had to join a long waiting list, but I’ve found a psychologist and a GP who are great.” (ID 291) “Many autistic people have found a space free from judgement where they can unmask and work through their needs, values, cognitions and behaviour with a skilled practitioner.” (ID 808) |
9% | 6% | 9% | 10% | 11% |
| 8 | When there is increased access to autism-informed health professionals and services (e.g., autistic-led services; services that have expertise in autism) |
“Having dedicated autism services, like the dental clinic at Queen Elizabeth II Hospital in Brisbane. Clinicians in such services consistently work within the autism context and such services develop better processes for providing tailored health care for Autistic people.” (ID 1362) | 8% | 8% | 7% | 11% | 8% |
324 | Research evidence, policy and landscape mapping to inform the National Autism Strategy
What we found – Physical health services |
Respondents who stated this as a problem
| Rank | What is working well, or has worked well, in relation to autistic people accessing physical health services and sample quotes from responses | Direct insight | All respondents N = 390 | Autistic people n = 161 | Family member or caregiver of autistic people n = 257 | Medical profession- als and allied health profession- als n = 105 | Other respondent groups* n = 166 |
|---|---|---|---|---|---|---|---|
| 9 | When there is continuity of care and continuity of information across providers (e.g., collaborative health teams; building relationships; individual care plans; accessible health information; health passports) |
“When medical professionals are well informed about an Autistic person’s needs e.g., with written information, there is often increased choices that enable a greater sense of control and predictability and procedures are less traumatic.” (ID 354) | 7% | 6% | 7% | 9% | 7% |
| 10 | When providers ask questions and listen to autistic people and/or their family members, and include autistic individuals and their families in healthcare decisions | “When people have listened and you are treated with respect… When you are asked “How does that look like for you[?]”. Working together, and realising that if things aren’t working out then you need to change approach, not just withdraw service.” (ID 495) “An A&E [Accident and Emergency] doctor who spoke directly to my daughter. He explained what he wanted to do e.g. check [heart] rate, asked permission before using stethoscope. He described what was involved in inserting a cannula and why he wanted to do it, asked permission and allowed her to feel each implement before he used it. My daughter is 19 and this was the first positive interaction she has ever had with a health professional. He was kind yet matter of fact without being condescending. She left feeling heard and empowered.” (ID 1550) |
7% | 8% | 9% | 5% | 7% |
325
Research evidence, policy and landscape mapping to inform the National Autism Strategy What we found — Physical health services
3.8.2 Umbrella review
An umbrella review is a form of research that brings together the findings of all existing reviews (systematic and scoping) that report on a specific topic. The focus of this review is on the physical health service itself (e.g., providers, delivery method), rather than on specific treatments offered when an autistic person accesses physical healthcare. As diagnosis and early supports or interventions are covered in previous sections and reviews, they were not included in this review.
The terms used for the searches and the number of articles identified, screened, and included are provided in Appendix K-2 and Appendix K-3. The final umbrella review reports on 34 systematic reviews, four of which were led by Australian authors. Almost all ($k$ = 30; 88%) of the systematic reviews were written in the last five years. The 34 systematic reviews collectively report on 520 individual studies.
The information and findings from the included reviews are summarised in the subsections below. When reporting on the number of people or participants in the review, this will be represented as $n$ = [number of participants]. When reporting on the number of reviews that considered a topic, this will be represented as $k$ = [number of reviews].
3.8.2.1 Participants within included reviews
In total, the reviews included 391,830,472 participants, with sample size for individual reviews ranging from 1 to 36, of these 870,844 (0.22%) eere reported to be autistic. Only three systematic reviews provided information on the gender of autistic participants. Most of the autistic participants in these three reviews were male (average = 66.03%) and ranged in age from 1 to 65 years.
3.8.2.2 Quality of included reviews
The quality of the included systematic reviews was assessed using the JBI Critical Appraisal Tool for Systematic Reviews. This tool assesses the methodological quality of a systematic review. The maximum score is 33, which indicates a very high-quality systematic review. The average quality score for the 33 included systematic reviews was 25 (75.76%), with the quality score ranging from 17 to 32.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 326 What we found – Physical health services
3.8.2.3 Topics of included reviews
The 34 reviews identified in the area of autism and physical health services can be summarised across six key topics. Of note is that these topics traverse the broad range of physical health settings, including primary care, hospitals, emergency departments, maternity services, and dental settings. The key topics identified were barriers and facilitators to accessing physical health services ($k$ = 11 reviews); the experiences of autistic people and their supporters when accessing physical healthcare ($k$ = 6); physical health practitioners: autism training, knowledge, and experience ($k$ = 15); autistic people’s use of, and predictors of use of, physical health services ($k$ = 12); and communication and collaboration ($k$ = 8) and technology and telehealth/telemedicine in physical health services for autistic people ($k$ = 2). The key findings for each topic are discussed in Table 51.
3.8.2.4 Research gaps
The 34 reviews identified a number of research gaps, which are combined with research gaps identified by the authors of this report and summarised in Table 51.
The barriers to healthcare for Australian autistic individuals have not yet been documented. Research addressing this gap should ensure sufficient sample sizes and recruitment methods to answer some of the critical questions about unmet needs by intersectionality as well as specific healthcare setting. Such work could also investigate any association between unmet healthcare need and health outcomes.
Given the importance of communication and collaboration, autism-specific healthcare resources (purpose designed for the Australian healthcare setting) could be co-designed and their impact on accessing healthcare evaluated. This could include an autism-specific healthcare kit, which supports autistic people to prepare for appointments and monitor their health outside of healthcare appointments.
Autistic people and their family members feel that physical health care professionals lack knowledge of autism, and ways to tailor their approach to support autistic people. Physical healthcare staff also report a lack of knowledge on autism and scores on autism knowledge questionnaires confirm this. This highlights the need for research to address this issue through co-developed and co-delivered training, the impact of which should be assessed through subjective and objective methods.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 327 What we found – Physical health services
FOI 24/25-1567
Table 51: Umbrella review findings for physical health services
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Barriers and facilitators to accessing physical healthcare services | $k$ = 11 AlHumaid (2022) Calleja et al. (2020) Erwin (2022) Mason et al. (2019) McBain et al. (2020) McLean et al. (2020) Samuel et al. (2022) Strauss et al. (2019) Walsh et al. (2020) Williamson et al. (2017) Wilson & Petersen (2018) |
• Autistic people and their family members report more problems in accessing physical healthcare than individuals with other neurodevelopmental conditions or non-autistic individuals • Barriers exist across the system which result in autistic people and their family members delaying appointments or opting out of proactive/preventative procedures. Frequently reported barriers include: - Differences or challenges with communication, including challenges with describing pain or symptoms and with processing speed - Inflexibility of provider or procedures - Inconsistency of provider and their level of autism knowledge - Lack of collaboration between providers - Noisy, bright, and unpredictable environments - Waiting times and waiting areas - Complexity of healthcare system, including scheduling and following through with different appointments and procedures - Organisational challenges (remembering appointments, taking medicines) - Costs, including funding or insurance coverage - Past negative experiences with healthcare providers or concerns about stigma - Feeling that one’s expertise about self or child was ignored. • Specific procedures were frequently reported as challenging and often avoided. These include physical examinations, procedures involving needles (including blood tests), and blood pressure measurement • Facilitators to accessing healthcare include: – Staff knowledge and accommodations for autism – Consistency of staff – Time to build a strong, positive relationship – Collaborative approach with both the autistic person and their parents/supporters – Clear, slow-paced communication with visual back-up – Financial assistance (US studies; Medicaid). |
• What autistic young people identify as barriers to specific procedures or healthcare settings • Barriers to healthcare experienced by autistic adults with sufficient samples to explore barriers by patient factors (e.g., age, gender and ethnicity) and specific healthcare settings • Intervention mapping exercise to identify pathways to reducing both broad and situation-specific barriers • Autistic people’s recommendations for adaptations to healthcare settings (virtual, or based on walk-through) • Co-development of interventions to reduce barriers to healthcare for autistic people; these may be patient (e.g., toolkit), provider, or organisational focused or may use technology (e.g., virtual reality, 360 walk throughs) to support the autistic person in advance of their healthcare appointment • Whether there is any association between barriers to healthcare and healthcare outcomes in autistic people • Acceptability and feasibility of autism-specific health check with associated resources to support access • Co-development and evaluation of training of all staff in healthcare settings which incorporates information on both the barriers and facilitators to autistic people accessing healthcare (see training section below) |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 328 What we found – Physical health services
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| The experiences of autistic people and their supporters when accessing physical healthcare | $k$ = 6 Boshoff et al. (2021) Erwin (2022) Koski et al. (2016) Sadatsafavi et al. (2022) Wilson & Petersen (2018) Williamson et al. (2017) |
• Some autistic people are hesitant to disclose their diagnosis of autism due to fears of discrimination or provider misconceptions of autism. Parents of autistic children report feeling judged by professionals. • Autistic people and parents of autistic children feel rushed during healthcare appointments and feel they do not have enough time to explain their concerns to healthcare providers • The “invisible” nature of autism means that many healthcare providers may not modify their approach to support autistic patients • Parents of autistic children are less satisfied with their physical healthcare encounters than are parents of children with other neurodevelopmental conditions • Healthcare environments can be overwhelming sensory experiences. The impact of these environments increases with longer waiting periods. • To allow quality care and engagement, healthcare procedures and encounters need to be adapted to accommodate the sensory and cognitive profiles commonly experienced by autistic individuals. Appointments and procedures may also need to take longer to accommodate for needs • Tools to collect information on autistic patients’ communication preferences, behaviours, sensory profiles, interests, and reinforcers have been developed and assessed in UK and US healthcare settings; none are reported for Australian settings. Patients with care plans based on this information report better experiences in hospital |
• The experiences of young autistic people who have accessed physical healthcare • Co-development and evaluation of a “healthcare kit” which includes items to support healthcare appointments (e.g., visual schedules, sensory-regulation items) • Review of current instruments to describe autistic patients’ profiles and preferences leading to co-development and evaluation of a brief profile relevant to the Australian healthcare system |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 329 What we found – Physical health services
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Physical healthcare providers: Autism training, knowledge, and experience | $k$ = 15 AlHumaid (2022) Boshoff et al. (2021) Burke et al. (2019) Clarke & Fund (2022) Cooke et al. (2020) Coughlan et al. (2020) Corden et al. (2022) Erwin (2022) Kouo & Kouo (2021) McCormack et al. (2020) Morris et al. (2019) Morris et al. (2021) Strauss et al. (2019) Walsh et al. (2021) Wilson & Petersen (2018) |
• Autistic people and parents of autistic children feel that healthcare providers do not have sufficient knowledge of autism. As a result, many healthcare providers do not understand how the needs of autistic patients differ and do not adjust their approach or procedures to support their autistic patient • Healthcare providers’ limited knowledge of autism was reported across multiple reviews. One review notes that the majority (69%) of studies report healthcare provider participants to have “inadequate knowledge” of autism. Knowledge was higher in those who had a personal connection to autism. Knowledge was also higher in paediatricians as compared to general practitioners or adult healthcare providers • Healthcare providers describe the complexity of providing care to autistic people (predominantly children). Many healthcare providers are aware that autistic people may require supports beyond those typically provided • Healthcare providers only report moderate levels of self-efficacy in working with autistic people. They report not feeling confident in knowing how to support the needs of autistic patients. Many will refer patients on to other specialists whom they view as being more experienced or having more resources to support autistic patients • Healthcare providers report limited access to autism-specific training. For those who have received training, the outcome is positive; trials of autism-specific training of healthcare providers result in increased positive outcomes in 80% of studies. Many of these positive outcomes remain present after 6 months |
• How young autistic people feel about their physical healthcare providers’ level of autism knowledge. • Australian healthcare providers’ knowledge of autism using a measure of autism co-developed with the autistic community (to ensure it assesses what autistic people want their healthcare practitioners to know) • Australian healthcare providers’ knowledge and experience of autistic patients of differing ages, with differing profiles, or with different intersectional identities • How Australian healthcare providers would like to receive training on autism and how this can be delivered to all geographical regions of Australia • Co-development and evaluation of co-delivered training on autism for healthcare providers and all healthcare staff (e.g., receptionists, administrators), evaluated with patient simulation and other objective data assessments • The effectiveness of embedding autism-related content (potentially through patient narratives) and competency-based assessments across initial training of healthcare providers |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 330 What we found – Physical health services
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Autistic people’s use of, and predictors of the use of, physical health services | $k$ = 12 Bishop-Fitzpatrick & Kind (2017) Boshoff et al. (2021) Burke et al. (2019) Calleja et al. (2020) Casagrande & Ingersoll (2021) Dallman et al. (2021) Gilmore et al. (2022) Lytle et al. (2018) Martin et al. (2022) McBain et al. (2020) Smith et al. (2020) Tregnago & Cheak-Zamora (2012) |
• Autistic people have higher rates of physical health problems, yet almost 25% of autistic children have at least one unmet health need (US data). This is significantly higher than children with other neurodevelopmental conditions • Autistic children access 2–13 times more non-psychiatric outpatient appointments, 2–4 more non-psychiatric inpatient appointments, and visit the emergency department 1.1–4 times more than individuals with other neurodevelopmental conditions or non-autistic individuals. This is predominantly based on US data. No equivalent Australian data were reported • Studies reporting on US autistic adults’ use of healthcare services report mixed results. Most report no significant difference from non-autistic people for emergency department use. Autistic adults have lower rates of preventative physical health examinations (e.g., cervical cancer screenings) but higher rates of hospitalisations and primary care appointments than non-autistic individuals. No equivalent Australian data were reported • Autistic individuals in the US have healthcare costs that are 2–4 times higher than those with other neurodevelopmental conditions and up to 9 times higher than non-autistic individuals. Individuals with co-occurring conditions, and those with more autism characteristics, have higher healthcare costs • Some autistic children are less likely to receive physical health services or are less likely to be satisfied with the services received. This is particularly apparent for those from racial or ethnic minority groups. Older autistic children, those with lower scores on measures of autism characteristics, and those from lower income families are also less likely to receive allied health services • Some interventions to empower parents of autistic people to navigate and access healthcare show improvements in parent knowledge but few result in higher levels of service access |
• Australia-specific data on healthcare access, healthcare costs, and unmet health needs for autistic people, as compared to non-autistic people, explored in relation to age, ethnicity, cultural background, socioeconomic status, and gender. Such studies should include data on all aspects of healthcare including primary care, preventative healthcare, emergency department visits, hospitalisations, acute healthcare, and dental healthcare as well as allied health. Consideration of quality as well as quantity of healthcare accessed • Whether geographical location (metro vs. rural/remote) impacts on healthcare access for autistic individuals • Co-developed empowerment programs that work in partnership with healthcare providers • Co-development of an autism-specific model of health disparity (cf. National Institute of Health) which explores the environmental, sociocultural, behavioural, and biological determinants of health disparities in autistic individuals. This may help to identify the role of healthcare service access in healthcare outcomes of autistic people across the lifespan |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 331 What we found – Physical health services
| Topic | Number of reviews on topic; citations | Key findings | Key research gaps identified |
|---|---|---|---|
| Communication and collaboration | $k$ = 8 Boshoff et al. (2021) Erwin (2022) Koski et al. (2016) Kouo & Kouo (2021) Morris et al. (2019) Samuel et al. (2022) Strauss et al. (2019) Wilson & Petersen (2018) |
• Collaborative partnerships are described as an “integral aspect” of healthcare for autistic people • Autistic people of all ages and abilities can have challenges communicating their pain or describing symptoms. They may prefer to use written or alternative ways to communicate these experiences. Challenges in (verbally) communicating can be exacerbated in times of high anxiety or sensory overload • Autistic people and parents of autistic children need clear, concrete explanations of options and procedures which allow enough time for processing and opportunities for questions. Having information provided in written form minimises the risk of information not being heard or being forgotten • Generic information on healthcare procedures is less likely to meet the needs of autistic people than non-autistic people • Parents of autistic children do not always feel that healthcare providers listen to them or acknowledge their role as an expert in their child • Parents of autistic children feel frustrated at the lack of communication between healthcare providers. Gaps in parent-provider communication lead to lower feelings of satisfaction with healthcare • Misunderstandings in communication may arise from healthcare staff misinterpreting the characteristics of autism • Healthcare providers report challenges in communicating with parents of autistic children when the parents are experiencing stress |
• Co-development of guidelines for shared-decision making and person-centred medical care for autistic people • The utility of co-developed autism-specific information resources for healthcare (e.g., on pregnancy, sexual education/health) • Training for healthcare providers (see training section) to reduce misinterpretation or miscommunications |
| Technology and telehealth/telemedicine | $k$ = 2 Knutsen et al. (2016) Sutherland et al. (2018) |
• Parents of autistic children generally report equal levels of satisfaction with telemedicine and face-to-face input from healthcare providers • Autistic individuals report high levels of satisfaction with telehealth methods • Telemedicine has adequate feasibility for delivering healthcare information or coaching to parents of autistic children |
• The views and experiences of young autistic children who receive healthcare through telehealth • Barriers and facilitators of autistic people engaging in telehealth approaches for physical healthcare • Physical health outcomes (rather than acceptability) following telehealth • The acceptability and feasibility of patient- and problem-centred telehealth models, where patients access a telehealth appointment with a specialist in their diagnosis or presenting issue, rather than necessarily one in their local area |
Note: Co-development in this context means with the autistic and autism community and with people who will receive the training (i.e., healthcare staff)
Research evidence, policy and landscape mapping to inform the National Autism Strategy 332 What we found – Physical health services
3.8.3 Policy and guideline review
To capture a broad range of policies and guidelines at a national and/or state/territory-based level, a series of internet searches were conducted (see Appendix K-5 for more information). The policies and guidelines identified covered 15 relevant sectors within the Australian health system, including: general practice; medical specialist services; nursing and midwifery; allied health; Medicare; Primary Health Networks; health promotion, health protection and disease prevention; aged care services; dental and oral health; Aboriginal and Torres Strait Islander health services; public hospitals; private health insurance; Veterans’ health; medicines and medical devices; and the National Disability Insurance Scheme. Information within the identified policies relevant to autistic individuals or people with disability is summarised in Table 52.
The search identified 27 physical health service policies or guidelines. These policies and guidelines were all published or updated between 2016 and 2022, with 89% ($n$ = 24) published or updated in the last 5 years (2018 to 2023). All 27 policies included provided some information relevant to individuals with disabilities; only three (11%) provided information directly relevant to autistic individuals. The policies summarised in Table 52 were distributed across national and state/territory levels with six from a national level, four from Australian Capital Territory, four from New South Wales, four from Victoria, three from Queensland, three from South Australia, two from Western Australia, one from Northern Territory and none from Tasmania. While additional policies were considered during this review (including those from Tasmania), only those that provided: a) information relevant to either autistic people or people with disability; or b) additional unique information over and above that already summarised in Table 52, were included.
Of note, there were 12 physical health sectors, for which policies or guidelines relevant to autism were not identified during the search process. These included: general practice; medical specialist services; allied health; Primary Health Networks; health promotion, health protection and disease prevention; aged care services; dental and oral health; Aboriginal and Torres Strait Islander health services; private health insurance; Veterans’ health; medicines and medical devices; and the National Disability Insurance Scheme. This may indicate that autism-related policies or guidelines are not available for that sector/profession, they are available only for individuals working within the profession, or they are difficult to access. The latter suggests that people working in, or interested, in this sector or profession may have difficulty accessing information that may assist in supporting autistic people.
3.8.3.1 Policy and guidelines relevant to autistic people
The three documents that specifically discussed information pertinent to autistic individuals highlighted that:
- Autistic children can access allied health services nationally, with a relevant referral, through the Medicare Benefits Scheme. They are unable to claim for these services if already accessing these for a co-occurring disability
- In Queensland, it is recommended that autistic individuals’ medical, behaviour, sensory and communication plans are considered when presenting with acute behavioural episodes in emergency departments. Collaboration with health professionals and care teams is recommended, particularly if information is unknown or treatment or transfer to another setting is required
Research evidence, policy and landscape mapping to inform the National Autism Strategy 333 What we found – Physical health services
- In the ACT Disability Strategy, specialist training of nurses and other carers is promoted to better support the sensory and other needs of autistic individuals receiving both hospital and home care.
3.8.3.2 Policy and guidelines relevant to people with disability
The 27 polices and/or guidelines that provided information pertinent to individuals with disabilities revealed that within physical health services:
- Individuals with disabilities have been identified as a vulnerable population, experiencing poorer health outcomes and access to health services than individuals without disabilities. Ensuring access to physical health services and safe and respectful experiences has therefore been prioritised for individuals with disabilities within many national and state/territory health policies. This is in line with national discrimination and disability legislation and health professional code of conducts
- Health professionals have a legal responsibility to provide a significant medical history regarding a person’s disability
- Extra support may be required by individuals with disabilities to understand their diagnosis, management plans, transition of care processes and how to access services. This includes: – Developing and communicating relevant health information in ways that are appropriate for each individual. This is of particular importance to those who may be non-speaking, use alternative communication strategies, and/or have intellectual disabilities. Providing sufficient time, support, short and clear statements, and minimising medical jargon should be prioritised by health professionals to ensure that individuals with disabilities are able to understand and make informed choices about their health care – Coordinating and collaborating with care teams and support networks, particularly when an individual lives in supported accommodation or accesses multiple services – Providing educational resources and engagement opportunities to empower people with disability, including access to health promotion and prevention programs and strengthening links with NDIS support staff.
- Considering the physical environment around and within health facilities may overcome barriers to access for some individuals with disabilities.
- While access to safe medicines should not be impacted by location of care, including disability care settings, it is acknowledged that there are current accessibility challenges for individuals with disabilities around required medications, medicine reviews, labelling and information, and communication with health professionals
- Access to medical equipment loan schemes is dependent on the jurisdiction. For example, individuals with disabilities are not eligible to access the New South Wales assistive technology loan scheme, however, in the Northern Territory, the equivalent scheme is open to individuals with permanent or long-term disability
- It is important to include people with disability in the development of health policies and programs that impact them.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 334 What we found – Physical health services
FOI 24/25-1567
Table 52: Policy and guideline review findings for physical health services
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National | Medical Board Ahpra | Good Medical Practice: A code of conduct for doctors in Australia | 2020 | × | ✓ | • Culturally safe and respectful practice requires genuine efforts to adapt your practice as needed, to respect diversity and avoid bias, discrimination, and racism. It also involves challenging assumptions that may be based on, for example, gender, disability, race, ethnicity, religion, sexuality, age, or political beliefs • No discrimination on the grounds of disability. |
| National | Palliative Care Australia | National Palliative Care Standards (5th Ed – 2018) | 2018 | × | ✓ | • Provision of palliative care for people who live in supported accommodation (e.g., disability residential services) is likely to require coordination of care between different services and different sectors including disability and health. For some people living with a disability, additional support may be required to assist them in understanding a diagnosis and prognosis, which can also complicate symptom management. Staff may also need to be aware of non-verbal or alternative communication strategies to assist them in the provision of care • Specific attention is paid to the needs of people who may be vulnerable or at risk, to support communication, goal setting and care planning. This includes, but is not limited to, people with intellectual disabilities • Clinicians should check that the child and their parents have been provided with sufficient support to make decisions. This includes support for children and parents who have communication difficulties, or decision-making difficulties associated with disability, mental illness or cognitive impairment. |
| National | Nursing and Midwifery Board Ahpra | Code of Conduct for Nurses and Midwives | 2018 | × | ✓ | • Adopt practices that respect diversity, avoid bias, discrimination and racism, and challenge belief based upon assumption (for example, based on gender, disability, race, ethnicity, religion, sexuality, age, or political beliefs) • Nurses must use expertise to protect and advance health and well-being of people with disabilities. |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 335 What we found – Physical health services
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National | Australian Government Department of Health | Medicare Benefits Schedule Book | 2020 | ✓ | ✓ | • A consultant paediatrician or psychiatrist can refer a child on the autism spectrum or other pervasive development disorders (PDD) to eligible allied health professionals for treatment services • A child can access either the allied health services for autism/other PDD or for disability, but not both • If a child sees a consultant paediatrician or psychiatrist other than the one who put the treatment and management plan in place, the consultant paediatrician or psychiatrist who is seen subsequently can refer the child for any remaining allied health treatment services that are available to the child. Children with an existing treatment and management plan can be reviewed under attendance items for consultant psychiatrists and paediatricians. Where the patient presents with another morbidity in addition to autism or other PDD, item 132 can also be used for development of a treatment and management plan. However, the use of this item will not provide access to Medicare rebateable allied health services for treatment of autism or any other PDD • A person is considered to have an intellectual disability if they have significantly sub-average general intellectual functioning and would benefit from assistance with daily living activities. The health assessment provides a framework for medical practitioners to comprehensively assess the physical, psychological and social function of patients with intellectual disability and to identify any medical intervention and preventative health care required. The assessment must include: (a) dental health check; (b) aural examination; (c) ocular health; (d) nutritional statis and review of growth/development; (e) bowel and bladder function; (f) medications; (g) immunisation statis; (h) exercise opportunities; (i) support for activities of daily living; (j) need for breast examination; (k) dysphagia and gastro-oesophageal disease; (l) risk factors for osteoporosis; (m) seizure control if diagnosed with epilepsy; (n) thyroid disease; (o) aetiological diagnosis; (p) treatment for co-occurring mental health issues; (q) timing of puberty and management of sexual development and activity; (r) signs of physical, psychological, or sexual abuse. |
| National | Australian Government Department of Health | National Preventive Health Strategy 2021-2030 | 2021 | × | ✓ | • People in lower socioeconomic groups are at greater risk of poor health, with higher rates of illness, disability and premature death • Health inequities are, in particular, experienced by certain groups within society, including people with disability • People with disability are considered a priority population. |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 336 What we found – Physical health services
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| National | Australian Government Department of Health and Aged Care | National Medicines Policy 2022 | 2022 | × | ✓ | • Access is irrespective of diversity, background, age, disability, location, or personal circumstance • The way information is developed must be appropriate to each person’s culture and language, health beliefs, accessibility, disability, and information needs • People living with disability may face specific challenges including accessing the required medicines formulations and medicine reviews, communicating with health professionals, and accessing easy to read written information about their medicines • The location of care delivery should not impact safe access to medicines, whether in different states and territories, in hospital or community health care settings or in environments such as disability care settings. |
| State | Queensland Primary Health Networks | Inquiry into Social Loneliness in Queensland | 2021 | × | ✓ | • Queensland Primary Health Networks are all actively working on cross sector programs which work to address the social and emotional determinants of health in communities including people with a disability. |
| State | Queensland Health | Aboriginal and Torres Strait Island Mental Health Strategy 2016 to 2021 | 2016 | × | ✓ | • Indigenous Queenslanders experience more ill-health and disability than non-indigenous Queenslanders • Aim to develop approach to working with a single care plan for people with mental illness that links mental health needs with any other community-based social and disability services they may require. |
| State | Queensland Health | Management of Patients with Acute Severe Behavioural Disturbance in Emergency Departments | 2021 | ✓ | ✓ | • Specific considerations should be made for patients with a disability such as those with intellectual disability or autism. If possible, seek advice from patient’s treating paediatrician/psychiatrist or if transferring to another facility the accepting paediatrician or psychiatrist. Details should be sought on current medication plans, behaviour support plans, communication, plans/aides, and sensory considerations for the patients (particularly for those diagnosed with autism) • Use short clear statements which do not include medical jargon. The patient may not have the capacity to process information. For patients with a disability ensure communication aligns with the considerations in the patients’ communication plan. |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 337 What we found – Physical health services
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | NSW Government | Clinical Principals for End of Life and Palliative Care (guidelines) | 2021 | × | ✓ | • Improves equitable access for priority and underserved populations, such as people with disabilities • The screening and identification process also recognises and identifies populations that face barriers in accessing and using services because of disability or communication difficulties. |
| State | NSW Government | Elective Surgery Access | 2022 | × | ✓ | • Treating doctor must provide significant medical history (including disability). |
| State | NSW Government | Emergency Department Patients Awaiting Care (policy) | 2018 | × | ✓ | • Communication should be via a range of methods that accounts for the patient and family/carers understanding of information, and any cultural, language, social, or disability requirements that are identified • When patients presenting to an Emergency Department are considered to be at risk, or who have a particular security need, a risk assessment to identify and address the identified security risks must be undertaken. These patients may include patients with development disability, and patients with mental illness or mental disorder. |
| State | NSW Government | Assistive Technology | 2020 | × | ✓ | • A person is ineligible for assistive technology through NSW Health if the assistive technology sought is required to support a disability. |
| State | ACT Government | ACT Drug Strategy Action Plan 2022-2026 | 2022 | × | ✓ | • People with disability are more likely to use alcohol and illicit drugs than the general population but are less likely to access treatment services • People with disability are often exposed to unique stressors and obstacles to equal participation in society which can contribute to increased risk of harm from alcohol, tobacco and other drugs • It is important to include people with disability in development of policies and programs impacting them, and to balance harm reduction approaches with recognising and respecting the rights of people with disability • Establish a multidisciplinary service to support young people who have mental health needs co-occurring with trauma, disability and/or drug and alcohol use. |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 338 What we found – Physical health services
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | Canberra Health Services Policy | Elective Surgery Access | 2021 | × | ✓ | • Healthcare facilities should consider the language and cultural needs of particular patient groups including individuals with disabilities. Mechanisms should be in place to align the information provided to patients with their capacity to understand, wherever possible. |
| State | Human Capital Alliance | Future Directions of Disability Health in the ACT: Phase one of the ACT disability health strategy project | 2021 | ✓ | ✓ | • Specialist training for nurses and other carers is stimulated, including learning how to support and care for people with intellectual disabilities who have for instance sensory impairments and/or autism • Key considerations for improving the health of people with disabilities include: (1) using person-centred care; (2) using a strengths-based social model of disability; (3) concept of reasonable adjustment embedded in national and ACT anti-discrimination legislation; (4) “universal design” of health services (including facilities, equipment, and processes) to improve access to care; (5) considering health care needs alongside social and cultural backgrounds, and/or additional health challenges; (6) people with disability are at high risk of adverse health outcomes; (7) “patient held” health information helps ensure safety and good health outcomes; (8) proactive and regular health assessment can improve health outcomes; (9) patient navigation support is effective in managing known risks; (10) capacity for effective reasonable adjustment relies on clear organisational process; (11) positive attitudes and behaviours of health care professionals; (12) training and development of health care providers supports them to become experienced and confident in dealing with people with disabilities and their support networks; (13) clearly established and monitored performance indicators as a driver of accountability and positive change; and (14) collection of relevant data is critical for quality assurance and quality improvement. |
| State | ACT Health | Health Canberra: ACT preventative health plan 2020-2025 | 2020 | × | ✓ | • Through the Healthy Canberra Plan continue to work in partnership with the ACT community to tailor responses that meet the needs of all population groups at all stages, including, people with a physical or intellectual disability. |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 339 What we found – Physical health services
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | Victoria Health | Victorian Cancer Plan 2020-2024: Improving cancer outcomes for all Victorians | 2020 | × | ✓ | • There are more than one million people with disability living in Victoria. The health status of people with disability is worse than for the general population in ways that are not always directly related to an individual’s disabilities. Discrimination and a lack of inclusion have a negative effect on a person’s health, both directly and indirectly • In Victoria, the priority under-screened groups include people with disabilities. Through the under-screened program, targeted initiatives to increasing screening include improving access to cancer screening for people with a disability. |
| State | Ambulance Victoria | Accessibility Action Plan 2020 - 2022 | 2020 | × | ✓ | • Strategic priorities and accessibility action plan includes a co-design approach whereby they aim to establish and maintain mutually beneficial relationships with people with disability and their representatives to improve service delivery. This involves understanding the lived experience of disability, addressing assumptions, finding solutions, and achieving sustainable outcomes • Aim to (1) deliver educational campaigns, tools, and engagement platforms that empower people with disability to better understand and access Ambulance Victoria’s services; (2) train and equip Ambulance Victoria staff with knowledge, skills and resources to better engage with people with disability, their carers and support networks; (3) improve access to buildings, facilities and ambulances for people with disability; (4) establish accessible methods to capture, monitor and respond to feedback, complaints and grievances from people with disability and their representatives. |
| State | Victoria State Government | Victorian Public Health and Well-being Plan 2019 - 2023 | 2019 | × | ✓ | • When implementing action towards the priorities of the plan, consideration should be given to the needs of Victoria’s diverse population, including people with disability. |
| State | Victoria State Government, Department of Health and Human Services | Victorian Aids and Equipment Program Guidelines | 2020 | × | ✓ | • Targets people who require assistive technology on a permanent or long-term basis for a health or ageing-related need. People with a disability who do not meet National Disability Insurance Scheme (NDIS) eligibility due to age, residency status or functional impairment level can also apply to the Victorian Aids and Equipment Program. |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 340 What we found – Physical health services
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| Territory | Northern Territory Government, NT Health | Territory Equipment Program (TEP) and the Seating Equipment and Technical Service (SEAT) | 2022 | × | ✓ | • TEP aims to provide prescribed items of assistive technology to assist eligible residents of the Northern Territory with a permanent or long-term disability, to enhance their safety and independence, and to assist them to live and participate in their community. |
| State | Government of Western Australia, Department of Health | Ambulance Services Western Australia: A framework for statewide ambulance service operations | 2021 | × | ✓ | • Ambulance services are delivered in a manner that is accessible to – and inclusive of – people with disability and that does not reinforce stereotypes. |
| State | Government of Western Australia, Department of Health | Western Australian Health Promotion Strategic Framework 2017-2021 | 2017 | × | ✓ | • The main target groups for the WA HPSF include people with disabilities, and carers and families of people with sickness and disability • Targeted interventions: complement population approaches with targeted approaches that are inclusive of needs and issues of sub-populations at higher risk of overweight and obesity (e.g., people with disabilities) • Reduce barriers and increase opportunities for physical activity across all populations, including people living with disability. |
| State | Government of South Australia | South Australian Alcohol and Other Drug Strategy 2017-2021 | 2016 | × | ✓ | • Ensure that services to address (1) alcohol problems; (2) illicit drug use; or (3) hazardous and harmful use of pharmaceutical drugs, meet the needs of people with a disability. |
| State | Government of South Australia, SA Health | Health and Well-being Strategy 2020 - 2025 | 2020 | × | ✓ | • Provide better long-term care for people with a disability and improve links with the NDIS • People with disability, and their families and carers, often have poorer health outcomes. These groups are considered priority populations. |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 341 What we found – Physical health services
| Organisation level | Organisation name | Policy name | Policy date | Reference to autism | Reference to disability | Relevant information |
|---|---|---|---|---|---|---|
| State | Government of South Australia | SA Health Regional Aged Care Strategy 2021 - 2025 | 2021 | × | ✓ | • The strategy will consider other sectors that closely interface with aged care services (e.g., disability services). |
Research evidence, policy and landscape mapping to inform the National Autism Strategy 342 What we found – Physical health services
3.8.4 Community views, research evidence, and policy/guideline alignment and gap analysis
As well as the research gaps identified as part of the research landscape mapping, the gap analysis (see Figure 9 for process) allows comparison of the current state (predominantly based upon the community views analysis but also some findings of the umbrella review and policy review) to an improved future state (based upon community views around what is working well, policy review, and some umbrella review findings).
Figure 9: Gap analysis: Current to improved future state
The gap analysis work for the physical health services section highlighted the following elements that need to be addressed in order to reduce the problems experienced by autistic people in relation to physical health services.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 343 What we found – Physical health services
3.8.4.1 There is a need to improve the level of autism knowledge and understanding of professionals working in physical health services
Current state
Almost one in four people who completed the physical health section of the community views survey highlighted physical healthcare professionals’ lack of knowledge of autism (or broader neurodivergence), its presentation, and its impact on the experience of healthcare for autistic people. Of note is that more medical professionals and allied health professionals reported this as an issue than did autistic people or family members.
The research landscape mapping results align with the community views. There were 15 systematic reviews on physical healthcare professionals’ level of autism training, knowledge, and experience. These conclude that physical healthcare professionals have “inadequate” knowledge of autism and many lack confidence to treat autistic patients. This finding is also reported by research sharing the views of autistic people and parents of autistic children, who feel that healthcare professionals do not have sufficient knowledge of autism. The lack of professional knowledge of autism was also highlighted as one of the most common barriers for autistic people accessing physical health services. There was limited Australia-specific research and no research within the reviews which evaluated knowledge of physical health conditions in autistic people.
Improved future state
The community views survey highlighted that physical health services work well for autistic people when they find a physical healthcare professional who is knowledgeable and/or experienced in autism. Aligning with this, the most frequently suggested solution to the problems autistic people face in relation to physical health services (within the community views survey) was increasing the autism knowledge of professionals within physical health services through training; this was recommended by 45% of respondents.
The policy review highlighted that there is a recognised need for specialist training on how to support the needs of people with disabilities (e.g. Future Directions of Disability Health in the ACT, 2021, Ambulance Victoria Accessibility Action Plan, 2020). However, none of the other policies reviewed suggested or mandated autism training for professionals providing physical health services.
Steps that can be taken to move from the current to the improved future state include:
- Co-creation of a core capabilities framework for physical healthcare professionals supporting autistic people (e.g., see the UK’s Core Capabilities Framework for Supporting Autistic People commissioned by Health Education England). This could inform training such as those described below
- Co-creation and co-delivery of evidence-based, autism-specific training that is relevant and accessible to anyone working in physical healthcare settings, not just healthcare professionals. The uptake (and therefore effectiveness) of this training could be supported by relevant federal and state policymakers suggesting or mandating completion of such training within policy. This could include training during onboarding, and for healthcare professionals, training embedded into initial courses as well as training that would be provided within annual professional development training offerings
Research evidence, policy and landscape mapping to inform the National Autism Strategy 344 What we found – Physical health services
- Co-development of specialised training for professionals whose role would benefit from more specific knowledge of autism, such as those supporting autistic people with more complex communication or support needs (e.g., see the National Health Service Oliver McGowan Mandatory Training on Learning Disability and Autism). This could go beyond knowledge to include simulated practice assessments.
3.8.4.2 There is a need for autistic people to have timely and equitable access to affordable physical health services
Current state
The community views survey indicated that a common problem autistic people experience in relation to accessing physical health services is long waiting lists, insufficient availability of services (especially outside of metropolitan areas), and services being too expensive to access. Whilst it is recognised that these issues may impact both autistic and non-autistic Australians, these issues may be particularly impactful for the autistic community as the research review showed that autistic people experience significantly poorer physical health than non-autistic people, and access physical health services more often than non-autistic people. Costs and waiting times were also highlighted in the research review as barriers for autistic people who need to access physical healthcare.
Improved future state
Policies recognise the health inequalities experienced by individuals with disabilities (National Preventative Health Strategy, 2021). They highlight the need to ensure people with a disability (which, within policy, would include autistic individuals) and their families can access physical health services, with some noting this as a priority area.
The community views survey highlights the need for more healthcare professionals, especially those in autism specialist roles or those who could form autism-focussed services, and increased funding for physical healthcare services. Ensuring that autism is considered and autistic people consulted in all aspects of healthcare related policy and processes, was also highlighted as a solution to the problems noted above.
Steps that can be taken to move from the current to the improved future state include:
- More training places for physical healthcare professionals (including neurodivergent physical healthcare professionals) with an interest or focus on autism and neurodivergence to increase workforce availability
- Collection and evaluation of data on Australian autistic individuals; service use and unmet physical healthcare needs, explored by intersectionality and co-occurring conditions, to identify those who may be at increased risk of not accessing services. This knowledge could be used to facilitate the co-development of resources to support any such group to access services, including information on the services that are available, how to access these services, and who can/how to access funding for physical health supports
- Community consultations on autism-specific health checks with associated resources to support access
- Autistic people to sit on advisory boards and boards of directors for hospitals or specific clinics.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 345 What we found – Physical health services
3.8.4.3 There is a need for autistic people and their supporters to feel heard and believed by those in physical health services
Current state
The most frequently reported problem with physical health services reported by autistic people in the community views survey was that they are dismissed or not believed by physical healthcare professionals; this was reported by more than a quarter of the autistic people who completed this question on the survey. This included physical healthcare professionals questioning a person’s autism diagnosis.
The research expands upon this by highlighting that some autistic people are hesitant to disclose their diagnosis of autism due to fears of discrimination or professional misconceptions of autism. Parents of autistic children also report feeling judged by professionals. Importantly, past negative experiences and the feeling that one’s expertise (either about self or child) are dismissed were identified reasons that autistic people or their families delay appointments or opt out of proactive/preventative procedures.
Improved future state
Multiple policies, including the Ahpra Code of Conduct for Doctors and for Nurses and Midwives policy, state the need to respect diversity, avoid bias and discrimination, and challenge assumptions based on disability. The community views survey highlighted that physical healthcare works well for autistic people when the physical healthcare professional questions and listens to autistic people and/or their family, and includes the opinion of autistic people and/or their family in healthcare decision-making.
Steps that can be taken to move from the current to the improved future state include:
- In addition to the recommendations on autism training noted above, this calls for specific training on the presentation and support of healthcare issues experienced by autistic people. This should enhance professionals’ understanding of health conditions in autistic people, allowing them to learn that whilst symptoms and presentations of health conditions may differ between autistic and non-autistic people, an autistic person’s healthcare condition experience(s) are no less valid
- Guidelines and guidance around procedures that autistic people can follow should they need to change practitioner or seek a second opinion due to their symptoms being dismissed or disbelieved.
3.8.4.4 There is a need for physical health services that provide accommodations and supports to enable autistic people to access their services
Current state
Almost one in five respondents in the community views survey felt that physical healthcare professionals are reluctant to adapt practices or provide supports for autistic people. A further 16% also reported that they experienced significant challenges in communication during their physical healthcare appointments. Examples included autistic people finding it hard to express
Research evidence, policy and landscape mapping to inform the National Autism Strategy 346 What we found – Physical health services
their experiences/symptoms, autistic people not being supported to use communication methods other than speech, and physical healthcare professionals not presenting information in a way that is accessible to autistic people.
The findings from research align with community views, with autistic people’s differences or challenges with communication, including challenges with describing pain or symptoms and with processing speed, and inflexibility of professionals or procedures, being two of the most commonly reported barriers for autistic people when accessing physical healthcare settings. The research describing the experience of autistic people or their supporters suggests that they often feel rushed in appointments and like they do not have enough time to explain their concerns to their physical healthcare professionals. The research also shows that parents of autistic children are less satisfied with their physical healthcare encounters than are parents of children with other neurodevelopmental conditions. Communication and collaboration between healthcare professionals and autistic people or their supporters was discussed in eight systematic reviews. Autistic people and their supporters feel unheard or their expertise unvalued in appointments. Communication challenges are exacerbated during times of high anxiety or sensory overload. Healthcare professionals also find it challenging to communicate during these times.
Improved future state
The policy review highlights the importance of “adapting practice as needed” (Ahpra Good Medical Practice: A code of conduct for doctors in Australia, 2021). Policies also specifically highlight the need to communicate relevant health information in ways that are appropriate for each individual, which may require additional time, short and clear statements, and minimising medical jargon.
The community views survey identified that physical health services work well for autistic people when physical healthcare professionals proactively ask about, or provide, accommodations or supports for autistic individuals. Examples included longer appointment times and inviting support people to attend in advance. Having additional support before or during healthcare appointments (e.g., support worker visits, information on processes or procedures in advance) and allowing alternative modes of communication (including options for booking appointments online and having appointments online) were both identified as additional factors that can make physical healthcare services work well for autistic people.
Steps that can be taken to move from the current to the improved future state include:
- Co-development of guidelines or recommendations of accommodations that physical health practitioners should offer to autistic people before or during physical health services. The guidelines or recommendations need a pathway to dissemination so that the information is provided to all practitioners which enables the supports or accommodations to be available and offered across a range of physical health service settings (e.g., ambulance settings, dental settings)
- Clear guidance and skills-based training for healthcare professionals on communicating with patients through methods other than spoken communication, such as the communication boards developed for use in the Queensland Ambulance Service (see autismcrc.com.au/knowledge-centre/resource/emergency-communication-board). Once professionals feel competent, all patients could then receive advice in the appointment letter that they will be able to communicate through their preferred means, and a reminder to bring along any preferred communication support device, resources or communication partner to their appointment
Research evidence, policy and landscape mapping to inform the National Autism Strategy 347 What we found – Physical health services
- Consultation with the autistic and autism communities regarding a method of indicating on medical records that the patient identifies as autistic, so that supports or appointment times/durations can be proactively tailored if needed
- Co-developed autism-specific health education materials. These could include generic information on specific healthcare issues or procedures (including home-based screening procedures), or clinic-specific information such as appointment or service-specific information
- Co-development of an autism-specific healthcare access toolkit relevant to the Australian context (American example autismandhealth.org/).
3.8.4.5 There is a need for easy-to-access services with low-sensory environments
Current state
The sensory elements of the physical health settings were identified within the community views survey as a problem for autistic people accessing physical health services. Additionally, one in 10 people also report that autistic people experience problems with accessing and physically attending physical health services. This includes elements such as challenges with transport, organisation, completing or understanding forms, and knowing about service options or entitlements.
Research studies within the umbrella review identified bright, noisy, or unpredictable environments and experiences of waiting areas as physical barriers to healthcare for autistic people. Additionally, there were barriers relating to the complexity of healthcare system, including scheduling and following through with different appointments and procedures, and organisational challenges.
Improved future state
As noted previously, the policy review highlights the importance of “adapting practice as needed” (Ahpra Good Medical Practice: A code of conduct for doctors in Australia, 2021). However, the policy does not specifically go into detail about ensuring physical environments are accommodating or considerate to sensory needs. The community views survey suggested making sensory-considerate physical healthcare services and settings as a solution to the some of the problems autistic people face when trying to access physical healthcare settings. This included a recommendation that professionals receive training about the impact of sensory profiles on healthcare experiences. The community also suggested that resources or supports should be provided to autistic people and/or family members to improve their access to healthcare (e.g., support to make appointments, autism-specific information on how to access healthcare, etc.).
Steps that can be taken to move from the current to the improved future state include:
- Guidance for healthcare settings to conduct environmental audits including noise and light levels, and suggested accommodations/adjustments that can be made to adjust areas that may pose challenges for autistic people. As part of this audit, opportunities should be provided for autistic people accessing the setting to provide feedback on sensory supportive and non-supportive elements
- Co-produce resources to support autistic people to communicate their sensory and communication preferences prior to or within physical health services. Explicit invitation and permission (e.g., on appointment letter, posters in waiting rooms) for people to bring along sensory supports to use/wear before, during, or after appointments.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 348 What we found – Physical health services
3.8.4.6 There is a need to understand more about why autistic people experience elevated physical health problems and what can be done, outside of healthcare settings, to reduce this risk
Current state
The research highlights that autistic people access more than double the number of physical healthcare appointments than non-autistic people. The broader research also highlights higher health problems and a reduced life expectancy for autistic people.
Policies recognise that individuals with disabilities have poorer health outcomes and access to health services than individuals without disabilities. The research is not sufficiently developed to inform services on the environmental factors which lead or help to prevent physical health problems in autistic people.
Improved future state
Policies specifically identify autistic individuals as a priority population for healthcare and highlight a need for improved equitable access for such populations.
Steps that can be taken to move from the current to the improved future state include:
- Longitudinal co-produced research on the physical health status and needs (met and unmet) of autistic people. This could then identify autism-specific risk factors for developing physical health challenges. This should be proactively designed to include those from intersectional or marginalised groups and with co-occurring conditions, as these may also be people who are at risk of not engaging with, or having unmet needs related to, physical healthcare services
- Co-development of an autism-specific model of health disparity (cf. National Institute of Health) which explores the environmental, sociocultural, behavioural, and biological determinants of health disparities in autistic individuals. This may help to identify the role of healthcare service access in healthcare outcomes
- Co-development and evaluation of community-based initiatives to understand and reduce the ongoing, significant chronic stress and/or trauma experienced by autistic people, which may be impacting autistic people’s physical health. This might include initiatives in schools, workplaces, and community groups, or through supporting accurate representation of autism within media. Any such initiative should cover the diversity of the autistic community by (for example) including autistic people from the LGBTQIA+ and culturally and linguistically diverse communities.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 349 What we found – Physical health services
4. Summary and conclusion
This comprehensive report combines the community views of over 1,000 community members, the findings of 185 systematic reviews (reporting on over 700 research studies and over 2,500,000 participants) and relevant content of 120 policy documents, to provide an understanding of the current landscape of eight service domains relevant to the lives of autistic people across Australia. As well as being reported upon individually, these three elements were used to conduct a gap analysis to compare the current state to an improved future state. Potential ways to move from the current to an improved future state were also suggested within each domain, leading to identified needs, i.e., areas for action and improvement which have the potential to be addressed within the National Autism Strategy and beyond.
4.1 Summary of identified needs across domains; areas for action or improvement
Whilst the report is presented by each specific domain, the gap analyses identified needs, or areas for action and improvement, that were present across multiple domains. Table 53 provides a summary of these areas across the eight domains. The table shows the pervasiveness of the issues and challenges experienced by autistic people in relation to accessing services or supports. In doing so, it highlights some clear paths on how to reduce these. The areas for action or improvement may be potential priority areas to be addressed within the National Autism Strategy.
Of note is that five areas for action and improvement were noted in at least half of the service domains. These were:
- There is a need to for greater understanding of autism and its diversity. This was the most frequently reported need across, and often within, each of the eight domains. A limited understanding of autism and its diversity was often identified as a problem experienced by autistic people, whereby professionals may have insufficient autism knowledge to effectively support autistic people. Across all domains an increased understanding of autism was seen as necessary to better understand the strengths and needs of autistic people, and how to tailor approaches when working with autistic people, reducing stigma and discrimination. Additionally, the need to improve the broader community understanding of autism was noted across multiple domains
- There is a need to provide and/or ensure adjustments, accommodations, and supports for autistic people. This was identified across five domains. This included autism specific or autism-tailored pathways within services. The community survey frequently highlighted that accommodations to support neurodiversity were often lacking, resulting in challenges in attending, engaging with and/or accessing services. Ensuring that autistic people are provided with appropriate adjustments and accommodations ensures that autistic people have the opportunity for equitable access to participate and thrive across settings including work, school, healthcare or other services, home, and the community
- There is a need for increased timely and equitable access to services. This was identified in six domains. The length of waitlists and difficulties in accessing services due to location (i.e., regional, rural, and remote) and/or an insufficient number of professionals were frequently identified as barriers to accessing services and supports for autistic people. This is particularly
Research evidence, policy and landscape mapping to inform the National Autism Strategy 350 Summary and conclusion – Summary of identified needs across domains; areas for action or improvement
impactful for the autistic community given research showing that more autistic people than non-autistic people experience mental health and physical health challenges. Increasing the number of professionals knowledgeable about autism would lead to better health and diagnostic services access for autistic people
- There is a need to ensure that physical environments are sensory-considerate. This was highlighted in four domains. Environments (e.g. schools, hospitals court rooms) that are not designed to be supportive of sensory processing differences can limit accessibility for autistic people. Proactively designing buildings and physical spaces to be inclusive for autistic people supports an equitable access to services
- There is a need to reduce financial barriers. This was identified in four domains. The often-prohibitive cost of services was associated with, for example, delays in receiving an autism diagnosis which in turn can prevent access to early intervention and support. These financial barriers were also identified as preventing or limiting access to health care. Reducing these financial barriers could support the quality of life and well-being of autistic people.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 351 Summary and conclusion – Summary of identified needs across domains; areas for action or improvement
FOI 24/25-1567
Table 53: Needs (i.e. areas for action and improvement) identified in the gap analysis across each of the eight domains
| There is a need for… | n | Diagnosis | Early Inter- vention or Supports | Education | Employment | Housing and Independent Living | Justice System | Mental Health Services | Physical Health Service |
|---|---|---|---|---|---|---|---|---|---|
| Greater understanding about autism and its diversity within government, services, professionals, workplaces, and/or the community | 8 | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
| Provision of adjustments, accommodations, and supports for autistic people to ensure equitable access, including through autism-tailored pathways | 7 | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | |
| Increased timely and equitable access (e.g., through more services, more providers, broader geographical access or locations) | 6 | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ||
| Reduce sensory stimuli in environments, more sensory-considerate environments in services | 4 | ✓ | ✓ | ✓ | ✓ | ||||
| Reduce financial barriers | 4 | ✓ | ✓ | ✓ | ✓ | ||||
| More co-produced research to understand more about factors that contribute to autistic people needing to access this service | 3 | ✓ | ✓ | ✓ | |||||
| More options and choice about the service or setting that will best support autistic people | 3 | ✓ | ✓ | ✓ | |||||
| More neurodiversity affirming approaches and understanding of autism and neurodiversity | 3 | ✓ | ✓ | ✓ | |||||
| A clear, consistent, and equitable approach to autism assessments | 2 | ✓ | ✓ | ||||||
| Families of autistic children to be better supported, helping them better understand autism and provide optimal care to autistic children | 1 | ✓ |
The other areas for action and improvement were:
Research evidence, policy and landscape mapping to inform the National Autism Strategy 352 Summary and conclusion – Summary of identified needs across domains; areas for action or improvement
- The need to increase understanding about factors that contribute to autistic people needing to access specific services, which was identified in three domains. For some areas (e.g., justice system), autistic people are more likely than non-autistic people to access the service. By understanding the reasons for this, supports can be developed to reduce this risk
- The need to provide choice for autistic people was identified in three domains. Without sufficient options, it assumes a “one-size-fits-all” approach, which does not reflect the diversity of strengths, interests and challenges across and within autistic people. By providing multiple options, it ensures that autistic people and their supporters are able to select the option that is best for them and their particular needs, skills, and preferences. It also affirms autonomy and right to self-direction
- The need for neurodiversity affirming approaches and understanding of autism was highlighted in two domains. This approach acknowledges that the differences in how autistic people interact with the world should be embraced, rather than seen as something that needs to be changed or “fixed”. This neurodiversity affirming approach is associated with a positive sense of self-identity and moves away from a deficit-view of autism (e.g., viewing these differences as “impairments”).
While some areas were only identified in one service domains, they still provide useful direction for improvements given how the service domains are inherently interlinked (e.g., early diagnosis supports access to early intervention).
4.2 Limitations and considerations of the findings
Multiple domains highlighted that the participant groups in the available research do not represent the diversity of autistic people now recognised and embraced. Within research there is a clear under-representation of females or those who identify with non-binary gender (e.g., in Justice System research), those with specific co-occurring conditions such as intellectual disability, and an under-description of other intersectionalities such as race/ethnicity and cultural background. Therefore, where policy is able to draw upon research, it must do so with knowledge of the research limitations, and place a call to action for researchers to address these gaps with high-quality, co-designed participatory research. Additionally, the survey data has minimal participants from a number of intersectional groups who are frequently underrepresented in research (e.g. those who have co-occurring intellectual disability, identify as non-speaking, users of augmented and alternative communication, those who identify as First Nations or culturally and linguistically diverse, and those in out of home care). Further work is needed to learn from the experiences of individuals with these intersectional identities.
Whilst the umbrella research reviews allow for reporting on a wide range of articles within each domain area, they do not allow for the inclusion of the most recent research findings. However, it may be that even the most recent research is behind the community experiences and clinical practice; for example, on 27th June 2023, a Google Scholar search for term “neurodiversity affirming” identified only six published academic journal articles on the topic. When the same search was conducted in Google on the same date, it returned 143,000 hits for websites including this term. Stronger collaborations between the autistic community, researchers, policy makers and those working in the service domains is needed to ensure that the research is focussing upon what is needed for policy and what is relevant to current community experiences and clinical practice. The policy search, whilst systematic and in-depth, could not identify policies that are internal to services or organisations.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 353 Summary and conclusion – Limitations and considerations of the findings
4.3 Conclusion
“Coming together is a beginning; keeping together is progress; working together is success.” — Edward Everett Hale
The National Autism Strategy, alongside other government policy and government discussions around autism, has the potential to make real, positive change for autistic Australians. The community views survey, and the research reviews, highlight the significant problems that autistic people and their supporters face on a daily basis when trying to access services in Australia. The responses in the community survey highlight the distress and potentially even trauma that is often experienced by autistic people and their supporters due to these experiences. This needs to change to enable autistic people to participate in work, school, home, and community activities, and/or have equitable access to healthcare and to the justice services.
The gap analysis between the current experiences and the improved future state highlighted significant needs (i.e., areas for action and improvement). Many of these impact across multiple domains and therefore addressing these areas for improvement have the potential to redefine outcomes for autistic people across the lifespan. These should be driven by policy that will enable and facilitate change through government, systems, organisations and professionals. The latter include researchers, autistic-led organisations and supporters of autistic people.
In addition to informing the National Autism Strategy and informing positive change, the community views survey has provided a synthesis of experiences pre-National Autism Strategy. The National Autism Strategy will no doubt set a vision of improvements for autistic Australians into the future, and stipulate the outcomes they expect to change once the strategy is implemented. A repeat of this work, especially the community views survey, will allow for an evaluation of “real change” experienced post-strategy; only by doing this is it possible to quantify how successful the strategy has been in achieving its goals.
Whilst the community perspectives and research and policy reviews are reported in this document in individual and specific domains, none of these happen in isolation, and improvements in one area could lead to significant benefits in others. For example, if autistic people were able to receive their diagnosis at an earlier age (improvement in diagnosis services) and then receive supports or interventions which are aligned with their goals to promote well-being (early interventions or supports), these may lead to improvements in education and mental health in childhood, which relate to improved employment, post-school education and mental health outcomes. Similarly, if more teachers and school leaders received autism-specific training to promote inclusivity and acceptance of diversity in schools, as well as strategies to support students effectively (education), autistic people could be more successful at school, this would support participation in post-secondary education and employment, which in turn is associated with financial security. Teacher and school leader understanding of inclusivity and acceptance of diversity could also support changes in the attitudes and actions of non-autistic students towards autistic students, which could provide a societal shift in how autistic people are treated in the home, workplace (employment), healthcare, and other settings (e.g., the justice system). Therefore, stakeholders must come together to address these issues nationally and genuinely collaborate to work towards a better future for autistic people in Australia.
Research evidence, policy and landscape mapping to inform the National Autism Strategy 354 Summary and conclusion – Conclusion
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National Autism Strategy Oversight Council Meeting agenda
Wednesday 16 August 2023, Time: 10 am — 5 pm (AEST)
Location: Department of Social Services, Greenway ACT (Please contact secretariat if you require Microsoft Teams meeting details)
DOCUMENT 1.2.4
| Aligned to Terms of Reference item | Agenda item | Time | Duration | Lead | Action | Verbal/paper |
|---|---|---|---|---|---|---|
| • Purpose of Oversight Council • Meeting frequency and format • Membership |
Agenda item 1: Welcome and meeting overview a) Acknowledgement of Country b) Welcome and apologies c) Meeting overview |
10–10:15 am | 15 minutes | Co-chairs: Clare Gibellini Luke Mansfield |
Members to note | Verbal |
| • Phased development of the Strategy • Priorities and work program |
Agenda item 2: Disability research project papers/report findings Discussion of disability representative organisation research papers to inform development of the Strategy and the national consultation process. These papers focus on the unique experiences and challenges faced by: • autistic First Nations people • autistic women and girls • autistic people who also have an intellectual disability, and • lessons learnt for a National Autism Strategy. |
10:15–11:00 am | 45 minutes | Clare Gibellini and Luke Mansfield | Members to discuss and note | Verbal and research papers sent to Council members on ## July 2023 |
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| Aligned to Terms of Reference item | Agenda item | Time | Duration | Lead | Action | Verbal/paper |
|---|---|---|---|---|---|---|
| — | Morning tea break | 11–11:20 am | 20 minutes | — | — | — |
| • Purpose of the Council • Phased development of the Strategy • Priorities and work program |
Agenda item 3: Autism CRC research and community engagement reports Discussion on the findings of the Autism CRC: • evidence-based environmental scan and findings from the community attitudes survey report • autistic community insights and co-design report on the work undertaken by Autism CRC on insights and co-design of the approach to the national consultation. |
11:20–12:00 pm | 40 minutes | Clare Gibellini and Luke Mansfield | Members to note and discuss | Verbal and final Autism CRC research and community insights and co-design reports sent to Council members on 24 July 2023 |
| • Purpose of the Council • Phased development of the Strategy • Priorities and work program |
Agenda item 4: Presentation by New Zealand — development of their Autism Spectrum Disorder Guideline (TO BE CONFIRMED) | 12:00 – 1:00 pm | 60 minutes | — | — | Verbal |
| — | Lunch | 1:00–2:00 pm | 60 minutes | — | — | — |
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| Aligned to Terms of Reference item | Agenda item | Time | Duration | Lead | Action | Verbal/paper |
|---|---|---|---|---|---|---|
| • Purpose of the Council • Phased development of the Strategy • Priorities and work program • Working groups |
Agenda item 5: Working groups • Endorse the working group proposal paper with Council members’ representation on preferred working groups • Finalise working group arrangements to establish the three working groups: social inclusion; economic inclusion; and diagnosis, supports and services |
2:00 – 3:00 pm | 60 minutes | Clare Gibellini and Luke Mansfield | Members to discuss and endorse | Verbal and draft working group proposal paper sent to Council members on ## July 2023 |
| • Meeting frequency and format • Timeframe of the Council • Priorities and work program • Phased development of the Strategy |
Agenda item 6: 2023 Oversight Council meeting schedule and work program/plan • 2023 Oversight Council work program/plan aligned to Strategy development stages and Terms of Reference • Endorse 2023 Oversight Council meeting schedule and work. |
3:00–3:40 pm | 40 minutes | Clare Gibellini and Luke Mansfield | Members to discuss and endorse | Verbal and draft 2023 work program/plan sent to Council members on ## July 2023 |
| — | Afternoon tea break | 3:40–4:00 pm | 20 minutes | — | — | — |
| • Meeting frequency and format • Working with children and vulnerable people • National Autism Strategy Oversight Council Secretariat |
Agenda item 7: Actions and outcomes of 3 July meeting and working with vulnerable people and children registration/check • Feedback from 3 July and 24 July meetings • Endorse 3 July meeting minutes |
4:00–4:40 pm | 30 minutes | Clare Gibellini and Luke Mansfield | Members to note and endorse Members to discuss |
Draft minutes, action items and Terms of Reference sent to Council members on ## July 2023 |
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| Aligned to Terms of Reference item | Agenda item | Time | Duration | Lead | Action | Verbal/paper |
|---|---|---|---|---|---|---|
| • Progress of action items • Endorse Terms of Reference • Working with vulnerable people and children registration for Council members |
||||||
| • Meeting frequency and format • Priorities and work program • Phased development of the Strategy • NAS Secretariat |
Agenda item 8: Other business and meeting closure • Members to raise other business • Summary of actions and next meeting |
4:40–5:00 pm | 20 minutes | Clare Gibellini and Luke Mansfield | Members to note/raise other business | Verbal |
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DOCUMENT 1.2.5
National Autism Strategy – Oversight Council page update
Meeting update – 3 July 2023
The third meeting of the Oversight Council was held online. Key items covered in the meeting included:
- The Oversight Council agreed to finalise the Terms of Reference as a priority and discussed actions and outcomes from the 17 May 2023 meeting. Once finalised, the Terms of Reference will be published on this web page.
- The Department of Social Services gave an update on the approach to market for a supplier to deliver the national consultations. National consultations are due to start in August 2023. Information on how to be involved in the consultations will be available on www.dss.gov.au/national-autism-strategy.
- The Oversight Council discussed the process for finalising roles and representation of the following three Working Groups - social inclusion, economic inclusion and diagnosis supports and services. This was an opportunity for members to discuss key themes that have emerged under the outcome areas. Working groups are expected to be finalised and operational by August 2023. Membership of the Health Roadmap Working Group has already been determined by the Department of Health and Aged Care.
- The next meeting is planned to be face-to-face in Canberra, the third week of August 2023.
Keep up to date
Stay informed and involved in the National Autism Strategy by subscribing to updates.
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DOCUMENT 1.3
From: National Autism Strategy Secretariat NationalAutismStrategySecretariat@dss.gov.au
Sent: Thursday, 27 July 2023 10:34 AM
To: MANSFIELD, Luke; redacted: s47F - personal privacy
redacted
Cc: redacted: s47F - personal privacy; National Autism Strategy Secretariat; Autism Policy
Subject: Research papers from selected Disability Representative Organisations for discussion at the 16 August meeting and the Autism CRC response to a Council member’s question [SEC=OFFICIAL]
Attachments: WWDA Experiences of Autistic Women and Girls (D23 795649).PDF; IA - Engaging with autistic people with an intellectual disability (D23 795645).PDF; FPDN Key Issues facing First Nations Autistic People (D23 795641).DOCX; A4 Lessons Learnt for an National Autism Strategy (D23 795633).PDF; A4 Autism in Australia Data and Sources (D23 795623).PDF; Autism CRC s answer to Andy Shim s question re National Autism Strategy Oversight Council co-design — LGBTQIA-specific approach — 22 June 2023 (D23 795611).PDF
Importance: High
Hello Oversight Council members
Thank you for confirming your availability to attend the fourth Oversight Council meeting on Wednesday 16 August 2023 (10 am to 5 pm AEST) at the Department of Social Services office in Tuggeranong, Canberra.
1. Research papers from selected Disability Representative Organisations (DROs)
In preparation for the Oversight Council meeting on Wednesday 16 August, attached are four research papers from selected DROs for pre-reading. These papers will be discussed at the 16 August meeting.
These research papers were prepared to inform an issues/policy paper to provide to the Oversight Council and Working Groups, and to inform the consultation process for the National Autism Strategy. These papers are not for further circulation please.
Attached are the following papers:
- First Peoples Disability Network paper — Key Issues facing First Nations Autistic People
- Women with Disabilities Australia paper — The Experiences of Autistic Women and Girls
- Inclusion Australia paper — Engaging with Autistic People with an Intellectual Disability to Develop the National Autism Strategy
- A4 papers — Lessons Learnt for an Australian National Autism Strategy, and Autism in Australia Data and Sources.
We will circulate an additional paper from the Australian Autism Alliance. The preparation of this research paper is within a slightly different timeframe to the other research papers.
2. Remuneration of your time spent preparing for Oversight Council meetings and other Oversight Council business
To ensure timely remuneration of your work in preparing for this meeting (with the considerable attached reading material) and for other Oversight Council business, we encourage you to record your time spent on this work and
1 Page 639 of 911
submit invoices to the Secretariat by email at NationalAutismStrategySecretariat@dss.gov.au as soon as you are able to do so. The Secretariat will support and work with you individually for a smooth remuneration process.
3. Autism CRC’s response to Andy Shim’s question about creating a LGBTQIA-specific approach to consultations
At the 17 May meeting, the Autism CRC took a question on notice from redacted: s47F - personal privacy on what the research and the co-design consultations are saying about a LGBTQIA-specific approach to consultations. At the 3 July meeting, redacted: s47F - personal privacy confirmed that the Autism CRC’s response to this question can be shared with the Council. The Autism CRC research and community insights reports referred to in their response were circulated to the Council on Monday 24 July for the Council’s pre-reading to prepare for the 16 August meeting. The response is attached for your information.
If you have any questions, please contact the Secretariat by email at NationalAutismStrategySecretariax@xxx.xxx.xx. You can also call me on redacted: s47F - personal privacy or the assistant directors – redacted: s47F - personal privacy on redacted: s47F - personal privacy or redacted: s47F - personal privacy on redacted: s47F - personal privacy.
Kind regards
redacted: s47F - personal privacy
redacted: s47F - personal privacy
(she/her)
Director
Autism Policy • Disability Support Branch
E redacted: s47F - personal privacy
P redacted: s47F - personal privacy • M redacted: s47F - personal privacy
Ngunnawal Country. PO Box 9820 Canberra, ACT 2601
Note: I work flexibly, Monday – Thursday. I have sent you this message because it’s a good time for me. I do not expect you to read, respond or action it outside your regular hours.
The Department of Social Services acknowledges the Traditional Owners of Country throughout Australia, and their continuing connection to land, water and community. We pay our respects to them and their cultures, and to Elders both past and present.
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Women With Disabilities Australia (WWDA)
WWDA Autism Research Project
The experiences of Autistic women and girls
June 2023
Women With Disabilities Australia Page 641 of 911
Publishing Information
Women With Disabilities Australia (WWDA) (2023). ‘The experiences of Autistic women and girls.’ WWDA Autism Research Project. June 2023. Written by Sophie Cusworth, Senior Policy Officer, Women With Disabilities Australia (WWDA): Hobart, Tasmania. ISBN: 978-0-9876035-5-5
| Acknowledgments | Contact |
|---|---|
| WWDA acknowledges the traditional owners of the land on which this publication was produced. We acknowledge First Nations people’s deep spiritual connection to this land. We extend our respects to community members and Elders past, present and emerging. This document was written by Sophie Cusworth, WWDA Senior Policy Officer. WWDA acknowledges the harm caused by Autism research conducted by non-Autistic researchers. This document was written by and in collaboration with Autistic women, girls, feminine-identifying and non-binary people. Formatting, editing and design by Carolyn Frohmader (WWDA) and Jacinta Carlton (WWDA). Women With Disabilities Australia (WWDA) receives part of its funding from the Australian Government, Department of Social Services (DSS). WWDA acknowledges with thanks, DSS for providing a small funding grant to assist with this Project. |
Women With Disabilities Australia (WWDA) Contact: Carolyn Frohmader, Executive Director PO BOX 407 Lenah Valley, Tasmania, 7008 Australia +61 438 535 535 carolyn@wwda.org.au www.wwda.org.au www.facebook.com/WWDA.Australia twitter.com/WWDA_AU Women With Disabilities Australia (WWDA) has Special Consultative Status with the Economic and Social Council of the United Nations. |
Disclaimer
The views and opinions expressed in this publication are those of Women with Disabilities Australia (WWDA) and not necessarily those of our funding bodies. All possible care has been taken in the preparation of the information contained in this document. WWDA disclaims any liability for the accuracy and sufficiency of the information and under no circumstances shall be liable in negligence or otherwise in or arising out of the preparation or supply of any of the information aforesaid.
This work is copyright. Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced without written permission from Women With Disabilities Australia (WWDA).
© 2023 Women With Disabilities Australia (WWDA).
ABN: 23 627 650 121 ARBN: 621 534 307
Awards
- Winner National Human Rights Award 2001
- Winner National Violence Prevention Award 1999
- Winner Tasmanian Women’s Safety Award 2008
- Nominee UNESCO Prize for Digital Empowerment of Persons with Disabilities 2021
- Nominee National Disability Awards 2017
- Nominee French Republic’s Human Rights Prize 2003
- Nominee UN Millennium Peace Prize for Women 2000
- Certificate of Merit Australian Crime & Violence Prevention Awards 2008
- Finalist International Zero23 Award, Information and Communication Technologies (ICT)
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About Women With Disabilities
Australia (WWDA)
Women With Disabilities Australia (WWDA) Inc is the national Disabled People’s Organisation (DPO) and National Women’s Alliance (NWA) for women, girls, feminine identifying, and non-binary people with disability in Australia. As a DPO and an NWA, WWDA is governed, run, and staffed by and for women, girls, feminine identifying and non-binary people with disability.
WWDA uses the term ‘women and girls with disability’, on the understanding that this term is inclusive and supportive of, women and girls with disability along with feminine identifying and non-binary people with disability in Australia.
WWDA represents more than 2 million women and girls with disability in Australia, has affiliate organisations and networks of women with disability in most States and Territories, and is recognised nationally and internationally for our leadership in advancing the rights and freedoms of all women and girls with disability. Our organisation operates as a transnational human rights organisation - meaning that our work, and the impact of our work, extends much further than Australia. WWDA’s work is grounded in a human-rights based framework which links gender and disability issues to a full range of civil, political, economic, social, and cultural rights. All WWDA’s work is based on co-design with and participation of our members. WWDA projects are all designed, governed, and implemented by women and girls with disability.
Disabled People’s Organisations (DPOs), also referred to as Organisations of Persons with Disabilities (OPDs) are recognised around the world, and in international human rights law, as self-determining organisations led by, controlled by, and constituted of, people with disability. DPOs/OPDs are organisations of people with disability, as opposed to organisations which may represent people with disability. The United Nations Committee on the Rights of Persons with Disabilities has clarified that States should give priority to the views of DPOs/OPDs when addressing issues related to people with disability. The Committee has further clarified that States should prioritise resources to organisations of people with disability that focus primarily on advocacy for disability rights and, adopt an enabling policy framework favourable to their establishment and sustained operation.1
CONTENTS
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Background 6
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Introduction 6
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Autistic women and girls 8 Prevalence 8 Experiences of Autistic women, girls and non-binary people 9
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Gender bias in the diagnostic process 12 Referral and access to diagnosis 12 Diagnostic criteria 13 Social communication and interaction 14 Restricted and repetitive behaviours 15 Diagnostic tools 16 Developing gender-sensitive diagnostic tools 18 Differences in presentation 20
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Masking and camouflaging 23 Impacts of masking 25
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Misdiagnosis and under-diagnosis 28
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Impacts of late diagnosis 31
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Co-occurring health conditions 35 Mental health 35 Eating disorders 35 Physical health 36
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Access to services 39
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Applied Behavioural Analysis 45
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Endnotes 47
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BACKGROUND AND INTRODUCTION
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1. BACKGROUND
1.1 In May 2023, the Department of Social Services invited Women with Disabilities Australia (WWDA) to prepare a report on the issues impacting individuals who experience barriers to assessment, diagnosis, supports and services for Autism Spectrum Disorder (Report). This Report will inform the Australian Federal Government’s National Autism Strategy. In particular, the Department of Social Services requested that WWDA consider the unique experiences of Autistic women and girls.
1.2 WWDA welcomes the opportunity to provide this Report. In developing this Report, WWDA consulted with Autistic women, girls, and non-binary people whose voices inform our Report (Participants).
2. INTRODUCTION
2.1 In recent years, it has become widely recognised that research-based understandings of Autism Spectrum Disorder (hereafter referred to as Autism) have been male-dominated and euro-centric.2 Emerging research indicates that current diagnostic processes are an inaccurate means of identifying the diagnoses and support needs of other Autistic populations.3 This includes Autistic women and girls, and Autistic people in other marginalised communities, such as those who are Aboriginal and Torres Strait Islander, Culturally and Linguistically diverse, and lesbian, gay, bisexual, transgender, queer, intersex, asexual, and gender diverse (LGBTQIA+). Autistic people also show greater diversity in gender and sexual identity than seen in the general population, but researchers rarely seek to include sex and gender-diverse individuals in their studies.4
2.2 It is now broadly accepted that women and girls face unique barriers to the identification of, and support for, an Autism diagnosis. Emerging research also recognises that Autistic women and girls, and gender diverse people, may present differently to their male counterparts.5 This difference in presentation may lead to misdiagnosis or under-diagnosis of Autism, where it inconsistent with the diagnostic criteria based on the traits of Autistic males.
2.3 As the majority of Autism research is conducted overseas, this research paper aims to contribute to a body of literature elevating the voices of Australian Autistic individuals, while reflecting the valuable evidence-based research conducted nationally and internationally.6
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AUTISTIC WOMEN AND GIRLS
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3. AUTISTIC WOMEN AND GIRLS
Prevalence
3.1 An estimated 80% of Autistic women and girls remain undiagnosed at the age of eighteen.7 Misconceptions about the prevalence of Autism in women and girls continue to impact access to diagnostic and support services. Historically, Autism was believed to be a predominantly male diagnosis. Early research tended to exclude women and girls from study populations entirely, and studies examining the validity of diagnostic tools continue to use primarily male samples.8
3.2 Autism research is impacted by, and in turn impacts, this diagnostic gender bias. When research is conducted, male-normed diagnostic tools are often used to confirm a diagnosis of Autism and exclude study participants who do not meet the requisite cut-offs, even where a diagnosis has previously been made by a clinician.9 In effect, unless actively remedied, gender-biased research perpetuates gender-biased research.
3.3 Emerging research indicates that Autism is far more prevalent in women and girls than previously estimated. While there remains a significant diagnostic gap, recent studies indicate that the true male-to-female Autism ratio is inflated by deficiencies in diagnostic processes.10
3.4 Assessments of the sex ratio in the Autistic population vary significantly, with studies finding ratios ranging from 5:1 to 1:1.11 The most comprehensive review of the gender and sex ratio analysed fifty-four studies with 13,784,284 participants.12 Overall, the review identified a pooled male-to-female odds ratio of four males to every one female. However, the review found significant variation between studies. Studies that involved identifying Autistic children based on whether they had a pre-existing diagnosis found a ratio of approximately 4.6:1 (four males to one female). The studies that involved undertaking diagnostic assessments to identify Autistic children found a ratio of 3.25:1 (three males to one female).13 The results of this review highlight a diagnostic gender bias and indicate that Autism is significantly more common in women and girls than previously estimated. Misconceptions about its prevalence in women and girls must be remedied by comprehensive screening.
3.5 The gender ratio demonstrated amongst Autistic adults is also lower (2:1) than in child services (5:1).14 This disparity, together with a significant difference in the average age of referral and diagnosis for girls compared to boys, indicates a delayed recognition of Autism in women and girls.15
3.6 In order for girls to receive a diagnosis, they require a greater “symptom” threshold:16 girls who meet criteria for Autism on diagnostic measures may be more significantly affected in real-world settings than Autistic boys.17 Where girls do meet the diagnostic criteria for Autism, they are more likely to present with intellectual
disability and behaviours reported as challenging.18 In the absence of such factors, girls are less likely than boys to meet diagnostic criteria at equivalently high levels of Autistic traits.19
Experiences of Autistic women, girls and non-binary people
3.7 In recent years, the United Nations has drawn attention to the marginalisation of Autistic people, holding an annual event to promote Autism awareness and understanding. Similarly, the World Health Organisation has acknowledged:
…autistic people are often subject to stigma and discrimination, including unjust deprivation of health care, education and opportunities to engage and participate in their communities.
…People with autism require accessible health services for general health-care needs like the rest of the population, including promotive and preventive services and treatment of acute and chronic illness. Nevertheless, autistic people have higher rates of unmet health-care needs compared with the general population. They are also more vulnerable during humanitarian emergencies. A common barrier is created by health-care providers’ inadequate knowledge and understanding of autism.20
3.8 In an Australian context, Autistic people are at increased risk of violation of a broad range of basic rights, including those under the Convention on the Rights of Persons with Disabilities.21 These include:
- (a) Healthcare: Autistic adults in Australia experience more barriers to health-care than their non-Autistic counterparts.22
- (b) Education: Autistic students have the worst educational outcomes of any students with disability in Australia.23 Autistic students may be denied enrolment, subject to partial enrolment, or otherwise treated unfairly.24
- (c) Work and employment: Autistic people in Australia experience high rates of unemployment or under-employment. Recent data indicates that many Autistic Australians lack the support available to find a job, experience poor health as a barrier to employment, and report that potential employers do not understand Autism.25
- (d) Access to justice: Autistic people are overrepresented in the criminal justice system and experience a lack of understanding and support across services.26 Risk of interaction with the justice system may be increased by late or missed diagnosis, housing insecurity, insufficient resources and poor educational experiences.27 Further, some Autistic characteristics may be misinterpreted by law enforcement, increasing the likelihood of arrest, detainment, seclusion or restraint.28
- (e) Freedom from exploitation, violence and abuse: It is well established that violence against women and girls with disability is far more extensive, frequent and diverse in nature than violence amongst either their male counterparts or women without disability.29 Several studies have indicated that Autism is an additional factor in a person’s vulnerability to gender-based violence, finding that Autistic women, girls and gender diverse people may be two to three times more likely to experience sexual harm than non-Autistic women.30
3.9 For women, girls and non-binary people with disability, gender inequality, disability inequality and discrimination are interconnected and inseparable. We experience the compounding effects of disability discrimination and gender-based discrimination at the intersection of both identities. This means that all forms of intersecting inequality and discrimination must be recognised and dismantled for Autistic women, girls and non-binary people to enjoy full social, economic and political participation. Intersectionality is a key element of the human rights approach to disability required by the Convention on the Rights of People with Disabilities (CRPD). 31
3.10 For Autistic women, girls and non-binary people in particular, gender is also a barrier to adequate support due to widespread gender biases in Autism research, screening and services.
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GENDER BIAS IN THE DIAGNOSTIC PROCESS
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4. GENDER BIAS IN THE DIAGNOSTIC PROCESS
Referral and access to diagnosis
4.1 Misconceptions about the prevalence of Autism in women and girls continue to pose a barrier to diagnosis, beginning with referral. One contributing factor is that key professionals (including educators, family doctors, paediatricians, psychiatrists, and psychologists) are not equipped with adequate knowledge about Autism, and are less likely to identify Autistic traits in women and girls due to a belief that Autism is primarily a male diagnosis.32 Gender-based biases appear to be particularly common amongst professionals who do not specialise in assessing neurodevelopmental conditions, but who “are nevertheless influential gate-keepers” to relevant services, such as educators.33 One Participant recalled:
I had a really challenging time even finding a GP to write the referral for me to get started. Then when I found the first doctor to do it, at the first appointment he told me I couldn’t possibly have autism because I was able to hold a conversation well with him. Never mind the fact I was masking as though my life depended on it! Luckily I was able to find a doctor who was willing to listen, but that took a great deal of time, money and stamina and I don’t know if I could go through that again, ever.34
4.2 Caregiver perception and concern also play a crucial role in referral for Autism assessment. Autistic women and girls without intellectual disability are more likely to demonstrate developmentally appropriate language skills than Autistic males.35 As language delays are generally the first reported concern among parents of Autistic children,36 this difference may contribute to lower rates of referral for diagnosis. Further, caregivers may seek to draw professional attention to a child’s development where the child’s behaviour is considered challenging. This may be due, in part, to the common mischaracterisation of Autism as a “behavioural disorder”, an interpretation arising from the medicalised and deficit-based diagnostic criteria.37 This mischaracterisation poses an additional barrier to diagnosis for women and girls, who are more likely to internalise, rather than externalise, their Autistic traits.
4.3 Importantly, caregiver perception is also not without the influence of social norms and expectations, and there is evidence to suggest that caregiver perception of behaviour “severity” may be influenced by a child’s gender.38 For example, internalising or withdrawal behaviours in girls, such as shyness or anxiety, may be less likely to cause concern because compliance is a trait typically attributed to and expected of girls.39 Behaviour that violates gender norms may be more likely to cause interpersonal challenges, and thus raise concern among caregivers or educators.40
One Participant described:
The idea that school reports need to be referred to in diagnosis feels odd, because clinicians are looking for “concerns” that teachers raised. All of my reports read that I was “a pleasure to have in class”. I was the ideal pupil because I’m Autistic, not in spite of it. Teachers wouldn’t see my constant anxiety, my feeling of isolation, or the meltdowns I had at home. They just saw a smart, shy kid who wanted to follow all of the rules. 41
4.4 Autistic traits and behaviours are less likely to be labelled “Autism” unless they are experienced negatively or are said to cause impairment, consistent with the deficit-based diagnostic model.42
4.5 Participants who had sought out referral and diagnosis themselves, also reflected on the costs of assessment, and concern that gender bias could result in no diagnosis despite significant financial loss.
I paid around $1500 out of pocket for an assessment via Telehealth, and that was a lot more affordable than assessment services in my area. I was so worried that I’d end up with a clinician who didn’t understand Autism in women and girls, and spend all of that time, emotional energy, and money for nothing. 43
Another Participant explained:
I was really lucky my parents helped me and I saved up. But imagine if that hadn’t happened. I probably still wouldn’t have a diagnosis. I’d probably still be struggling to figure out who the hell I was. What the hell was bloody wrong with me? Now I know nothing’s wrong with me, I know that now, but I didn’t know that before.44
Diagnostic criteria
4.6 There is a disproportionate number of women and girls who score highly on measures of Autistic traits, but do not meet the current diagnostic criteria for Autism.45 This suggests a gender bias inherent in the diagnostic criteria and/or the tools by which an individual is assessed.
4.7 Autism is medically defined as a heterogenous neurodevelopmental disorder, characterised by “deficits” in social communication and interaction, and the presence of restricted and repetitive behaviours.46 Diagnosis is categorical, and obtained “when a clinician determines that a threshold of relatively abstract features which make up autism criteria… has been reached”.47
4.8 The diagnostic criteria for Autism Spectrum Disorder, as set out in the Diagnostic and Statistical Manual (DSM-5-TR) requires that individuals have persistent deficits
in each of three specified areas of social communication and interaction, and at least two of four types of restricted, repetitive behaviours.48 Studies indicate that women and girls can present differently to males in relation to this core criteria.49 As one Participant told WWDA:
It’s no wonder so many women are never getting a diagnosis or not getting a diagnosis until their later life. Or how many people we know that accidentally got a diagnosis because they happened to run into someone at the right time…The diagnostic criteria, they need to fix it. It doesn’t work. It doesn’t show what we experience. I think it’s a miracle any of us actually get the diagnosis. But what really worries me is how many people are not getting the diagnosis?50
4.9 Clinical diagnosis of Autism also relies on observations and reports, neither of which may be separated out from the social structures in which gender norms operate. As Parish-Morris, et al. (2017) have written:
ASD experts make diagnostic decisions based on observable behaviour, and subtle differences in how a child moves or talks will influence the way they are perceived. Gender socialization or social mimicry may lead to “camouflaged” behaviour in girls with ASD, which, combined with widely held gender biases about how girls and boys should behave and true biological sex differences, likely complicate efforts to effectively identify and treat boys and girls with ASD.
Recent attempts to reduce bias by directly sampling behaviour and using objective, computational measurement tools hold promise over existing parent report and clinician rating scales, but even these new tools will likely be influenced by variables such as age, sex, gender socialization, socio-economic status, physical and mental health, and home and cultural environment.51
Social communication and interaction
4.10 When assessing an individual’s social communication and interaction, clinicians are required to identify deficits in social-emotional reciprocity; nonverbal communicative behaviours; and developing, maintaining, and understanding relationships.52 Crucially, Autistic women and girls often present differently to Autistic males in relation to each of these three measures.
4.11 Compared to Autistic males, Autistic women and girls are more likely to be socially motivated,53 to seek intimacy and companionship,54 to display higher levels of social reciprocity,55 and social and emotional insight,56 and to pay more attention to faces and social images.57 Autistic women and girls also use more social words, including during diagnostic assessments.58 Notably, this is the case even where Autistic women and girls have equivalent social skills and challenges to Autistic boys.59 As Cola et al. (2022) have written:
It is important to note that the expert clinicians in our study detected social communication challenges in autistic girls despite elevated levels of social talk, suggesting recognition that using social words is not the same as demonstrating social skills or possessing social understanding. More concerning is the possibility that other adults who are not autism experts (e.g., teachers, primary care physicians, parents/caregivers) may observe increased social talk in autistic girls—compared to autistic boys—and interpret it as an indication of increased social competence, thus reducing the likelihood that girls are referred for an autism evaluation in the first place.60
4.12 Autistic women and girls also tend to communicate (both verbally and non-verbally) in ways that are different to their male counterparts. This includes by using physical gestures in ways that are more noticeable and vivid and involve increased energy.61 This finding is important for two reasons:
First, children with autism show deficits in the development of gestural communication; they gesture less and at lower rates compared to both typically developing children and also other children who are developmentally delayed. Second, gestures are coded under the communication section of ADOS-2 algorithm. The better an individual performs on gesturing, the lower the autism score he or she receives under this item on the algorithm.62
4.13 Patterns of speech and the use of linguistic markers may also have gender differences. While the use of linguistic markers, such as “um” and “uh”, has been reported as low in Autistic populations,63 recent studies indicate that Autistic girls, as well as neurotypical children, may use these markers differently to Autistic boys.64 Speech patterns that replicate those of non-Autistic children may complicate the detection of Autism in women and girls, because they are a measure by which an individual’s conversational and social competency is gauged.65
4.14 Further, and as noted above, assessments of social communication and interaction are inherently informed by social norms and expectations, including those related to gender.
Restricted and repetitive behaviours
4.15 Restricted and repetitive behaviours refer to the expression of repetitive body movements or mannerisms, fixations or heightened interests in certain objects or topics, sensory behaviours, and routines and rituals.66 Colloquially, these are often referred to as “stimming” (self-stimulatory behaviours to express or regulate oneself), Special Interests, sensory seeking and sensory avoidance, and an insistence on sameness.67 There is some evidence to suggest that when undergoing diagnostic assessment, greater weight is attributed to restricted and repetitive behaviours in males than in females.68 Some studies have argued that Autistic females are less likely to demonstrate restricted interests, which may pose a barrier to obtaining a diagnosis.69
4.16 However, it is not clear whether Autistic women and girls tend to score lower than males on measures of restricted and repetitive behaviours due to low levels of these traits, or because assessment tools are not sensitive to gender differences in how these traits might present. Notably, a study of Autistic children found that before the age of five, girls and boys demonstrated equivalent rates of restricted and repetitive behaviours, with differences emerging with development.70
4.17 While some studies indicate that masking and camouflaging behaviours influence the extent to which restricted and repetitive behaviours are identified during assessment, others suggest that behaviours and interests of Autistic women and girls may be more likely to be perceived as “typical”.71 Autistic women and girls may develop specialised interests in topics that are consistent with the interests of non-Autistic girls. There is also evidence to suggest that Autistic women and girls are less likely than Autistic males to have specialised interests involving objects.72 Anecdotally, many Autistic women and girls report specialised interests in social or interpersonal topics, such as psychology, drama, or social justice. One Participant described:
Acting was my special interest. Almost every Autistic woman I know took acting classes at some point. Autism and acting feel very connected. It was a pathway to self-expression, where all of my big emotions were accepted. One of the first things I did after my diagnosis was write and perform a monologue about Autism. But acting was also a way to learn about human behaviour. I think my Autism was so masked because I learned how to perform in every aspect of my life. 73
4.18 Participants also highlighted that specialised interests did not draw attention where they aligned with social and cultural norms:
I think my special interests went unnoticed because they were either considered “feminine” or “productive”. When I spoke about my special interest in a celebrity, I was just a “fangirl”. When I spoke about my special interest in my field of work and study, I was just “driven”. When people use a deficit model for Autism, they only see the traits that they consider inconvenient, unproductive or disruptive to the status quo. 74
4.19 Ultimately, if restricted interests and repetitive behaviours are used as critical diagnostic criteria, without attention to gender differences, Autistic women and girls may be missed.75
Diagnostic tools
4.20 It is now widely acknowledged that the diagnostic and screening tools developed to diagnose Autism (including those considered the “gold standard”, such as the Autism Diagnostic Observation Schedule) are largely based on the typical presentation of Autistic males,76 and require observations of external behaviours.77
They therefore lack the specificity and sensitivity required to accurately identify Autistic females’ traits and experiences.
4.21 It is also recognised that women and girls who exhibit similar levels of Autistic traits to males are less likely to receive a diagnosis when accessing clinical diagnostic services.78 Similarly, a recent study indicated that Autistic women and girls experience greater discrepancies between clinician-rated and self-rated Autistic traits when undergoing assessment, with Autistic women and girls assessed as “less impaired”.79 These findings, alongside anecdotal evidence, indicate that diagnostic tools may be poorly suited to evaluating Autism in women, girls and non-binary people.
4.22 Participants also reported that the diagnostic tools can be difficult to interpret, particularly when Autistic traits are internalised. Given the higher prevalence of internalisation among Autistic women and girls, issues of misinterpretation may disproportionately impact this demographic:
When I’ve developed all these little strategies, I don’t realise that other people can just get up and do the thing. And I have a 10 step programme for doing the thing which takes me all day. But the question is “can you do it?” Yeah. Yeah, I can do it. And there’s no little box where you can explain, “yes, I can do it but only if this happened, or only in this scenario”. There’s no opportunity to explain. It’s all just: you click the box and it assigns a number. Based off the box you clicked, you get a summary at the end of the numbers and then it’s whether the number’s high enough… there’s no personalisation there. 80
4.23 A number of Participants recalled interpreting assessment questions literally, a known difference in Autistic language use and understanding:
I had to learn that if the question was “do you struggle with X?” and my answer was “no because I have a complex system for managing X”, then yes, I struggle with X. It’s like, “Do I struggle to make eye contact? No, it’s uncomfortable, but I have this system where I count how many seconds I hold eye contact for, and then I look away at an object that I think your average person would look at, and count for a few seconds. And then I look back. But I can physically make eye contact, so I’ll tick no. 81
4.24 Participants therefore emphasised the importance of holistic and comprehensive assessment processes, which consider different sources of information and feedback, and allow for opportunities to reflect on assessment questions.
Developing gender-sensitive diagnostic tools
4.25 In order to remedy gender bias in the diagnostic process, clinicians should seek to obtain an in-depth understanding of a person’s behaviours and experiences across a variety of contexts, rather than relying on whether or not a person has met relevant score thresholds.82 This requires a shift from male-normed diagnostic tools and a consideration of qualitative data.83 Indeed, studies have demonstrated that expert clinicians achieve greater inter-rater reliability on diagnosis of Autism when using their clinical expertise rather than standardised checklists.84
4.26 Information should also be sought from multiple sources.85 As one Participant described:
The psychologist who assessed me asked me to complete pre-assessment forms, which were open-ended. They interviewed my partner, and sought information from my family, and used different assessment tools. It took about 6 weeks and in that time, my understanding of Autism changed. I came to understand what the diagnostic criteria actually looked like in person. I remember taking one of the free screening tools before I sought assessment, and then after my diagnosis. I scored above the threshold for Autism both times, but my score post-diagnosis was about 60 points higher. I think it’s because I knew what the questions actually meant in practice.86
4.27 The use of multiple and specific diagnostic tools may also remedy the often “abstract” criteria for diagnosis, making it less susceptible to bias. As Napolitano et al. (2022) have identified, broad and abstract constructs such as “deficits in social communication” may contribute to the under-diagnosis of Autism in women and girls.87 Alternatively:
…studies that use narrow constructs (e.g., peer relationship; social attention; interpersonal motor synchrony; peer engagement behaviours; play behaviours; difficulty engaging in back and forth conversations, use of atypical gaze, and specific types of anxiety symptoms) could be more useful to highlight specific differences.88
4.28 Autistic women and girls also tend to present more atypical sensory profiles than Autistic males, reporting significantly higher scores in relation to hyper-reactivity and hypo-reactivity to sensory input.89 Including an assessment of sensory profile during the diagnostic process may result in better outcomes for women and girls seeking diagnosis.
4.29 Clinicians should also consider the extent to which Autistic traits may be “masked” or “camouflaged”, including where such behaviour is unconscious. In recent years, expert clinicians have used the Camouflaging Autistic Traits Questionnaire (CAT-Q), a diagnostic tool developed from Autistic adults’ lived experience. The tool assesses individuals’ own perceptions of three subcategories of behaviours: “compensation” (strategies used to actively compensate for difficulties in social situations); “masking” (strategies used to hide Autistic characteristics); and
“assimilation” (strategies used to fit in with others in social situations).90
4.30 However, as Pearson and Rose (2021) have written:
To reflect on masking, people must be aware that they are doing it. That may make it difficult to measure both the conscious and unconscious aspects. Researchers might attempt to examine this by comparing the masking experiences of people who have received earlier diagnoses with those diagnosed more recently, as well as whether community involvement impacts on how people experience masking.91
4.31 As one Participant told WWDA:
I didn’t really believe things like [masking]; that it was a thing that we did, or that people did. I wanted to go and ask someone else, to understand. Someone who wasn’t autistic. And when my OT explained it to me, she talked about how we sometimes take on the traits of others or we hide our true selves because we’re trying to fit in all the time. And I really do that a lot.92
Another Participant recalled:
I’ve had a lot of therapy and learning since I got my diagnosis and I have learnt how much I actually mask and now I can kind of almost describe it.93
4.32 Clinicians should therefore seek to educate women and girls seeking assessment in order to facilitate reflection:
I didn’t know what masking was until I heard about it online. There’s this idea that diagnosis rates are increasing because social media has made neurodivergence popular. The reality is that I was always Autistic, but Autistic people on social media platforms gave me the words for my own experience.94
4.33 Some Participants also spoke about being identified as potentially Autistic by other Autistic people. Known colloquially as being “peer reviewed”, this is a common experience within the Autistic community, highlighting the utility of involving Autistic people in the design of diagnostic tools:
…it’s sort of come up in conversation, and then they’ve gone, “wait, I thought you were Autistic, I thought you knew this”. And then through those conversations, I did a bit more of a deep dive into everything… and came to the conclusion myself that I was neurodivergent, and then sought out a diagnosis. 95
Differences in presentation
4.34 Prior to the age of four, Autistic children show limited differences in the presentation of core Autistic traits.96 Differences in core traits arise or become more pronounced as Autistic individuals age, and social and cultural factors influence gender differences.97 Autistic traits may also become more pronounced when the demands of an individual’s environment (including social, functional, environmental and emotional demands) exceed their capacity.98 A number of Participants who were diagnosed in adulthood reported seeking diagnosis when they felt unable to manage the demands of relationships, health, and work or study.
4.35 As outlined above, Autistic women and girls may present differently to Autistic males in all elements of the core diagnostic criteria. This includes in relation to social motivation, social and emotional insight, language, non-verbal communication, interests, and repetitive behaviours. However, the literature presents mixed views on the origin of these differences. While some theorise that biological sex differences cause differences in presentation, others propose that differences may be driven by social environment and gendered socialisation.99 As one Autistic advocate has written:
Autistic women and girls don’t experience different Autism, they experience different prejudice.100
4.36 Many studies on the sex or gender differences in Autistic people conflate the concepts of sex and gender,101 which may contribute to an undue emphasis on biological difference between Autistic males and females. Regardless of the cause, differences in the presentation of Autistic women and girls requires the immediate attention of researchers, health professionals, educators and the broader community.
4.37 As gender or sex differences emerge, Autistic women and girls are less likely to demonstrate “externalising” behaviours or traits, such as hyperactivity or behaviour considered disruptive. Rather, Autistic women and girls tend to experience internalised traits and struggles, such as anxiety, depression, and disordered eating.102
4.38 Autistic women and girls also engage in “masking” behaviours at a greater frequency than their male counterparts. 103 As outlined above, masking refers to the strategies an Autistic person uses (whether consciously or unconsciously) to camouflage or compensate for their Autistic traits and experiences. Masking is defined as the “suppression of natural responses and adoption of alternatives across a range of domains including social interaction, sensory experience, cognition, movement, and behaviour”.104 Participants described being quick to assimilate to the social environment, and hypervigilant to social cues.
4.39 Autistic women and girls also exhibit differences in empathic response to Autistic males. The ‘Empathy Quotient’ is a self-report scale commonly used to assess an Autistic person’s experience of empathy; however, it is largely focused on
cognitive empathy (the ability to cognitively understand another person’s mental or emotional state).105 On measures of cognitive empathy, Autistic individuals tend to score lower than their non-Autistic counterparts.106 This reductive measure of empathy is likely to contribute to the damaging myth that Autistic people do not experience empathy, which also poses a barrier to diagnosis:
When my mum asked my teachers if I could be Autistic, they said that I was too empathetic.107
4.40 Rather, is likely that Autistic people experience empathy differently to their non-Autistic peers. Autistic individuals show no differences from non-Autistic people in relation to the levels of attention paid to others displaying distress,108 but may be more likely to experience affective empathy (by experiencing emotional arousal when observing another person’s emotional state). When observing another person’s pain, Autistic girls may be more likely to engage in emotion-focused comforting, while Autistic boys may be more likely to engage problem-focused comforting.109 These gender differences can be seen across both Autistic and non-Autistic children:110 the pro-social empathic responses, and emotional-sharing,111 of Autistic girls may be more consistent with those of non-Autistic girls, than Autistic boys.
4.41 Further, many Autistic women and girls report experiencing “hyper-empathy”, although there is little evidence-based research on this experience. One recent study has indicated that when Autistic women and girls experience shared affect, they may demonstrate less differentiation between their own perspective and the perspective of the other.112 Difficulty distinguishing between one’s own emotions and the emotions of another person was also reported by Participants:
I might not always understand them cognitively, but I can feel others’ emotions as though they’re my own. 113
4.42 The dissonance between social perception of an Autistic person’s empathy, and the individual’s actual experience, may be explained by the “double empathy problem”.114 This framework posits that differences in perspective and communication between Autistic and non-Autistic people results in bi-directional breakdowns in interpretation.115 This is an important framework because it disrupts the notion that Autistic people’s ways of communicating are inherently wrong. Instead, Autistic and non-Autistic people have distinct and valid modes of interaction, and relational difficulties arise in response to that mismatch.116
MASKING AND CAMOUFLAGING
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5. MASKING AND CAMOUFLAGING
5.1 Autistic women and girls report that they engage in masking behaviours at a greater frequency and duration than Autistic males.117 However, there is no sex or gender difference in reporting whether or not an individual “masks”. 118 The heightened frequency in masking behaviours among women and girls may be due to increased rates of social motivation and other environmental factors.
5.2 As outlined above, masking may be both conscious and unconscious. While some researchers describe masking as a conscious social strategy to “fit in”, others posit that it is a sub-conscious response to threat or trauma,119 and an adaptive mechanism.120 Ultimately, masking is “an unsurprising response to the deficit narrative and accompanying stigma that has developed around Autism”.121
5.3 Common masking behaviours include developing scripts to navigate social interactions, consciously forcing eye contact, or internalising responses to sensory stimuli, such as fear or pain. One Participant described:
Before I was diagnosed, I didn’t realise that I was masking. I knew that I had this internal script that had stage directions, and I knew that I put a lot of effort into my social interactions. But I didn’t realise that other people didn’t do that.122
5.4 Another Participant explained:
When I go to work, I sit in the car and I take a deep breath and then I move out of the body of [me] the mum, [me] the person into [me] the… worker, and that means like, I feel like I become this different person… I feel like I contain myself in this different body all day. And then I be someone else and I use someone else’s words and I do that so that I can keep my job and I can fit in and I can do what I need to do… And I don’t even know who I am properly yet without the mask anyway. Because I don’t always know how to take it off.123
5.5 There is some evidence to suggest that masking is linked to physical or psychological safety, a factor which may influence the higher rates of masking seen amongst women and girls, People of Colour, and people in the LGBTQIA+ community, who are already at disproportionate risk of harm, discrimination, abuse and violence. One Participant explained:
After I disclosed my diagnosis I almost felt pressure to unmask. I don’t think people realise that it’s something you learn throughout your
whole life, every time you get negative feedback. And unmasking isn’t always safe. The people who had criticised me for having a blank facial expression before my diagnosis, were the same people who told me I didn’t need to mask anymore. 124
5.6 Indeed, many Autistic people experience marginalisation on multiple intersecting axis:125 for example, Autistic people are more likely to be members of the LGBTQIA+ community.126 One Participant told WWDA that masking their Autism can be a method of compensating for other ways in which they are visibly different:
I’m already aware of the way I present [as a gender diverse person]. I can’t change that at the drop of a hat, whereas I can mask my Autistic traits like that. Straight away, I can reel that in and be slightly more acceptable to society… I’m aware that when I go out, I’m someone who visibly, people could make the assumption that that’s a gender diverse person. That’s already a lot. And then if I choose to unmask and have these visible Autistic traits, it’s a very vulnerable position to be in and I’m potentially putting myself at risk…
Basically, I think I have to make that decision of: is it safe for me to maybe look a little bit more visibly autistic? Is that going to cause a disadvantage to me in that situation? 127
5.7 Another gender diverse Participant described:
I think for me being non-binary and queer, there’s so much hiding, so much masking. Like there’s so many things that all those different parts of me have to hide, to get through the day safely, to keep my job, or to not get hassled by people. So I feel like I don’t really always get to be me. 128
5.8 Assumptions about capability are also a barrier to “unmasking” (or openly presenting one’s Autistic traits). One Participant described a concern that unmasking in the workplace would result in their employer making assumptions and decisions about their abilities, rather than consulting with them to understand their strengths and support needs. Other Participants had experienced this response, and other discriminatory practices, after unmasking or disclosing their diagnosis:
…when they didn’t know that I was autistic, and when I was hiding a lot of the things about me, I was on a really good career path… And then when I felt like I was in a safe working environment, and I had safe people around me and I started to talk about being autistic… It was like this whole set of thinking shifted to, from me being this really capable amazing and talented human being that was set to do really well, to being this woman who needed to be babied, or who, you know, all of a sudden couldn’t do things that she’d been doing for a really long time or, or couldn’t handle the responsibility of that
new project or couldn’t, you know, possibly manage the team and do the work… it was almost overnight and so I ended up ultimately leaving because I couldn’t handle it anymore. And it’s disgusting, but also I couldn’t make it a discrimination case because I couldn’t prove anything. You know, I had no hard evidence, it was just subtle changes in behaviour that all added up to what it was…. And then when I went to a new job… I went back to hiding because I didn’t want to see that happen again.129
5.9 Another Participant recalled:
Within the week of informing my manager of the fact I’d received the diagnosis, I was required to undergo weekly supervisions, and could no longer manage my budget without clearing it through my line manager. Something I had been doing for more than 18 months. I was also immediately excluded from Board meetings and all planning and upskilling for the future [promotion] ceased. The only change that had happened was me informing them of my diagnosis. Eventually I left, and when I secured a new role I did not disclose my diagnosis, instead opting to return to masking my true self to keep my career. This absolutely destroyed my mental health in the end and I had to quit, taking time away from work to recover. So these days I mask heavily until I know the situation and who I can trust in the room, even when working in the disability sector. 130
5.10 In reflecting on their experience in the workplace, one Participant also described the labour of representing multiple points of diversity as a gender diverse Autistic person:
I don’t want to be the person carrying all of those vulnerabilities into my workplace. That takes so much… I don’t have the capacity to be that person for everything, because then I’d be so drained after every day at work. Being the person who’s, like, educating on every little thing in society that is not the typical presentation. 131
Impacts of masking
5.11 A number of studies have highlighted the adverse impact of masking upon Autistic individuals, linking masking with poor mental health outcomes,132 and increased risk of suicide.133 A 2018 study measured rates of suicidality amongst Autistic individuals compared with the general population, finding that masking behaviours significantly predicted suicidality in the Autistic group.134 Importantly, masking or camouflaging was considered a unique risk factor for suicidality, independent of mental health conditions such as depression or anxiety.135
5.12 Masking may also be a risk factor for Autistic burnout, discussed in greater detail below.136
5.13 Loss of identity and low self-esteem are also common experiences amongst high masking Autistic individuals.137 Such individuals report feeling that they do not know who they really are, and that their relationships with others may be built upon their masked selves, rather than their authentic selves. 138 This can increase feelings of isolation or being misunderstood.
MISDIAGNOSIS AND UNDER- DIAGNOSIS
6. MISDIAGNOSIS AND UNDER-DIAGNOSIS
6.1 Due to misconceptions about the prevalence of Autism in women and girls, and its diverse presentations, many Autistic women, girls and non-binary people experience misdiagnosis or missed diagnosis. A recent qualitative study of Autistic women, girls and their families found that key roadblocks to earlier diagnosis included: age of pre-diagnosis indicators, mental health diagnoses, narrow understandings of Autism based on male stereotypes, and unavailable and unaffordable diagnostic services.139 As Hamdani et al. (2023) have written:
For the most part, autistic characteristics of girls and women from this study were unnoticed or unremarkable until later along their developmental and social role trajectories between childhood and adulthood. Autism was less likely to be considered along the clinical pathway as the girls and women got older and not until a significant event or challenge related to daily life functioning was experienced. Recognition and diagnosis of autism occurred when demands for social interaction, academic, or professional performance increased, often at points of life stage transitions (e.g. elementary school to high school, post-secondary school to work).140
6.2 Autistic women and girls are more likely to receive diagnoses of depressive, anxiety, or personality disorders instead of, or prior to, an Autism diagnosis.141 One Participant told WWDA:
I saw seven different psychologists over 14 years before I was diagnosed with Autism. I remember psychologists pointing out all of these traits that they observed that I now know are Autistic traits. But no one ever mentioned the word Autism. At one point I was diagnosed with Adjustment Disorder, which makes me laugh now because of course I had difficulty adjusting to change: I’m Autistic.142
6.3 Multiple Participants had been incorrectly diagnosed with Borderline Personality Disorder prior to their Autism diagnosis. One described having their diagnosis revoked by a psychologist specialising in Autism:
I had sought out this diagnosis because I was really struggling with my mental health… I was like, “well, everything I’m feeling matches Borderline Personality Disorder… So I got on a wait list… And it took almost a year for me to actually get an appointment there, and in that
space of in the space of that year, I had stopped being so majorly affected by these symptoms… I spoke to Registrar for an hour and did some questionnaires. And I got diagnosed with really mild BPD… And then it wasn’t until I had my comprehensive neurodivergence assessment this year, which was like “you definitely don’t have BPD”. 143
6.4 Many Participants spoke about misdiagnosis leading to inappropriate supports, services and “treatments”, as discussed further below.
IMPACTS OF LATE DIAGNOSIS
7. IMPACTS OF LATE DIAGNOSIS
7.1 Late diagnosis has significant impacts upon the life outcomes and quality of life of Autistic women, girls and non-binary people.144 This includes in relation to health, access to support, education and employment. One Participant described how receiving her Autism diagnosis in her 60s had caused her to reflect on her experiences of schooling, exclusion, and relationships:
It just made my life so hard, not knowing. I think my life would have been really different, if someone had been able to help me understand that this is part of who I am.145
7.2 Another Participant explained that being undiagnosed and without support had had “an irreparable toll” on their nervous system, resulting in chronic physical health issues. Others described leaving workplaces, or becoming either underemployed or unemployed.
7.3 Late or missed diagnosis can also have a significant impact on the education outcomes of Autistic people, who are 50% less likely to obtain a Bachelor’s Degree than other students with disability.146 One Participant noted that had they been diagnosed earlier and received adequate support, they would have continued with their university studies. Instead, they explained:
I dropped out of uni because I experienced Autistic burnout and I just didn’t know what was going on with my head and my body… I didn’t have the words to explain what I was feeling… If I’d have known that I was Autistic and that I was experiencing Autistic burnout, and had support in place, I don’t think that I would have dropped out.147
7.4 Notably, Autistic women and girls may experience disadvantage in the education system or in the course of employment even with a diagnosis. Many girls who are diagnosed with Autism do not meet the criteria for school-based funding, because they exhibit lower levels of disruptive behaviour and may have developmentally appropriate language skills.148 As outlined above, this is not necessarily commensurate with having less challenges.
7.5 Participants also reflected on “Autistic burnout”, a phenomenon only recently the subject of evidence-based research.149 In one of the first studies published on Autistic burnout, it was defined as the “experience of a long-lasting pervasive state of exhaustion, loss of function, and reduced tolerance to stimulus that is conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports”.150 In a thematic analysis of interviews with Autistic people, Autistic burnout was said to occur due to life stressors and barriers to support that ultimately outweighed abilities, resulting in negative impacts on
health, capacity for independent living, and quality of life.151
7.6 Masking or camouflaging, stigma, and discrimination are also key risk factors.152 One Participant described:
It’s like putting on some someone else’s skin all the time. And that’s really hard. And then sometimes I do it so much that I forget to not do it…. I reckon that’s when I get burned out. Because I’m like, I’m like holding on so tight. 153
7.7 Consistent with the existing literature, Participants reported that Autistic burnout was not well understood.
7.8 As one Participant explained:
The first time I experienced Autistic burnout would be from high school… I was very, very highly masked because I was desperate to fit in… I was putting so much energy into the social side of school and also so much energy into the academic side of school. And at the same time was in an abusive relationship and had really bad anorexia…. I just had nothing else to give, ‘cause I’d given so much for so many years. And I put so much effort into everything, and I’d been so hypervigilant and like in such a state of “trying” for so long that I think my body, my brain, just gave out. 154
7.9 Another Participant described burnout being the catalyst for seeking diagnosis:
I’d had fatigue, chronic pain and frequent sickness for years. But when I started working full time in an office, it all caught up with me. I changed jobs, because I thought it was occupational burnout, but it didn’t get better in my new job. I had constant brain fog and would have to take naps on my lunch breaks. I was always on the verge of panic or tears and I could barely cook or clean. The loud noises that I’d always hated sent me into panic. I got blood tests, and saw doctors, and thought it must be physical. And then a family member called me one day and said “I think you might be Autistic”.155
7.10 Participants also described feeling a loss of identity and skills after being diagnosed as an adult:
I learned how I should function in this world without learning about my challenges or support needs. When I was diagnosed, I didn’t know how to “be” in a way that wasn’t highly masked or driven by adrenaline, or the fear of failing to live up to neurotypical standards. We spend our whole lives working double time to avoid standing out or being “too much”. So when all of that fell away, I didn’t know what my needs or boundaries were, or how to do the things I used to be able to do. 156
7.11 Another consequence of a missed or late diagnosis is a denial of the opportunity to experience a community of people with shared experience.157 Many Autistic people describe feeling misunderstood and isolated prior to obtaining their diagnosis:
…we see [an Autism diagnosis] as a positive now. But how many of us are missing out on that? How many of us are still sitting at home? Like metaphorically beating ourselves up because we think we’re useless or we think that we can’t, or “why are we so weird?” or “why don’t we fit in?” when it could be something as simple as the right diagnosis?158
7.12 Conversely, personal Autism acceptance and positive Autistic identity are associated with better mental health outcomes.159 For many Autistic people who are diagnosed as adults, a diagnosis provides a sense of self-compassion, permission to be oneself, and a sense that being different is acceptable.160 Others describe feeling a sense of belonging within the Autistic community, and in this in turn contributing to greater self-acceptance.161
7.13 On positive Autistic identity, one Participant described:
I have a lot more empathy and understanding for my present self and also my past self. And it also means I can advocate better for myself in in situations where it’s necessary, like at work or with medical stuff, I can go… “I’m autistic, I have support needs, but I am also an independent person and I’m capable of making decisions” 162.
7.14 Another Participant explained:
I’m kind of getting better at understanding what [it] means to me… it’s not that I’m hopeless or bad or a terrible person. It’s that I’m autistic and that it takes a lot of work to do those things. And more than the average person would take.163
7.15 As Autistic woman and Autism advocate Chloe Hayden told The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability:
Initially, when I was diagnosed as autistic, it was absolutely terrifying because the only understanding that we had of Autism was that it was a deficit, that there was something wrong with your mind if you were autistic… Now, as a 25-year-old, being autistic is something I am immensely proud of. It is who I am wholeheartedly and in its entirety… A diagnosis is something that is so, so deeply important for not just a child but for anyone to be able to understand who they are. People think that a diagnosis is going to label someone, but we as human beings label people anyway, so having a diagnosis simply puts the label into something that is in my control and in my hands.164
CO-OCCURRING HEALTH CONDITIONS
8. CO-OCCURRING HEALTH CONDITIONS
8.1 Autistic women, girls and non-binary people experience various co-occurring health conditions which can have a significant impact on wellbeing. Studies on the prevalence and impact of these conditions on Autistic women and girls is limited. However, the available research indicates that Autistic women and girls may experience a higher prevalence of both physical and mental health conditions.165 Further, Autism may impact the interactions women and girls have with medical, allied health, and service providers.
Mental health
8.2 Anxiety and depression are among the most common co-occurring conditions for Autistic women and girls. As outlined above, a diagnosis of anxiety and/or depression may also disguise Autism, leading to a missed Autism diagnosis. A number of studies have indicated that Autistic women and girls may experience higher levels of anxiety than Autistic males.166 Research also indicates that Autistic women and girls are likely to have co-occurring Attention Deficit Hyperactivity Disorder (ADHD), which may present differently in women and girls. Atypical ADHD traits (such as internalised hyperactivity or emotional dysregulation) in women and girls may lead to underdiagnosis or missed diagnosis.167 Anecdotally, the combined impact of Autism and ADHD may serve to disguise both diagnoses.
8.3 As previously discussed, Autistic people are also at an increased risk of suicidality:168 research has consistently demonstrated that both Autistic traits and the masking of those traits, are important risk markers for suicidality.169 As persistent efforts to mask and camouflage one’s Autistic traits has been consistently linked to poor mental health outcomes, clinicians should be aware that mental health conditions co-occurring with Autism may be related, in part, to masking,170 as well as social stigma and discrimination.
Eating disorders
8.4 Autistic women and girls are also at an increased risk of disordered eating.171 Approximately 70% of Autistic people experience eating related difficulties, which may be caused by eating disorders, sensory aversions, or motor difficulties.172 Autistic people do not only experience restrictive patterns of disordered eating (such as anorexia nervosa and Avoidant/Restrictive Food Intake Disorder) but also experience bulimia nervosa and binge-eating disorder.173
8.5 One Participant explained that for her, disordered eating was not due to sensory sensitivities, but was related to masking and control. She described:
I experience some alexithymia, so there are times when I have very bodily responses to emotional experiences. I feel things quite intensely within my body when I’m distressed, and I think part of my disordered eating was seeking a bodily solution to a bodily problem. I experience something emotionally distressing and I feel it in my body. And so I would look for ways that my body could experience control. I think my disordered eating was also about wanting to belong and not having another visible identifier of being different. 174
8.6 Another Participant stated:
I think it was 100% a product of masking. I felt really out of control of my whole environment with School, socially and… the pursuit of having the body type that was the societal standard of beauty meant that people liked me more because I looked a certain way. And it was like “Oh, I’ve done this to myself and now… I’m getting that validation from people. People are inviting me to parties and they want to be my friend. So this is working and I’m being accepted by everyone”. 175
8.7 As outlined above, there is also greater prevalence of gender and sexual diversity within the Autistic community: neurodivergent people are up to 7 times more likely to identify as non-binary or gender diverse.176 Like Autistic individuals, members of the LGBTQIA+ community are disproportionately affected by eating disorders. This is particularly so for trans and gender diverse individuals whose disordered eating may be influenced by gender dysphoria.177 The intersection of these identities may present a cumulative risk for gender diverse Autistic people.
Physical health
8.8 Autistic women and girls experience more overall physical health challenges than non-Autistic women and girls, and Autistic men and boys.178 They are at greater risk of cardiovascular and respiratory conditions,179 gastrointestinal symptoms and disorders,180 and reproductive health concerns than the general population.181 There is also evidence to suggest a link between Autism and Ehlers-Danlos syndrome, a connective tissue disorder which can be associated with chronic pain.182 One Participant explained that her Autism diagnosis made sense of her complex medical history:
I believed that I had a whole range of independent health conditions. I had a history of anxiety and “panic attacks”, disordered eating, chronic pain, gastrointestinal issues, hypermobility, menstrual issues, and ear nose and throat issues. Coupled with my interests-driven
personality, preference for sameness and routine, and sensory sensitivities, I was so clearly Autistic on paper, but it was overlooked. Getting an Autism diagnosis made sense of my whole medical history. It made me feel less distressed about my physical conditions, because I understood them more. 183
8.9 Another Participant explained that their neurodivergence diagnosis provided context for their Chronic Fatigue Syndrome:
When I was going through getting diagnosed with chronic fatigue, it was suggested that my nervous system was stuck in fight or flight mode… They were like “your body is not going into the rest cycle… it’s not resting, it’s not digesting”…I think that is likely actually linked to neurodivergence… They wanted me to do a fatigue program… all that stuff that I would have gone through probably would not have helped and potentially would have even made me feel worse. 184
8.10 Participants also described having “lightbulb moments” when reflecting on how Autism had interacted with their health conditions:
I was diagnosed with a chronic pelvic pain condition and I saw multiple specialists per week for years. I remember the day my pain specialist listed my pain condition as “extreme”. I tried every treatment I could access. It wasn’t until I listened to a podcast that I learned about the connection between neurodivergence and pelvic pain. I remember sobbing while I listened, wondering why no one ever told me.185
ACCESS TO SERVICES
9. ACCESS TO SERVICES
9.1 It is widely recognised that women, girls and non-binary people experience unique barriers to healthcare, due to gender based bias.186 Access to and experience of services can be also be uniquely complicated for Autistic people, including due to incorrect assumptions about individuals’ skills or needs.187 A number of Participants told WWDA that due to the barriers they face in accessing services, they do not seek support unless “absolutely desperate”.188 One Participant described feeling anxious about how she might present in medical or allied health settings:
I’m always aware that the way I present might impact how I am treated. If I don’t disclose my diagnosis and I mask, I risk not getting support. If I don’t disclose my diagnosis but I don’t mask, I risk being perceived as weird or suspicious. If I do disclose my diagnosis and “seem Autistic”, I risk being discriminated against or patronised. If I do disclose my diagnosis and I mask, I risk people not believing me.189
9.2 One Participant reflected on feeling scared and misunderstood by doctors while in hospital:
I found it really hard. There’s so much noise in hospital… I was on edge all the time. I was on edge because I didn’t know what the outcome of my treatment was going to be. But I was also on edge because, you know, there’s strange people that I don’t know and I have to explain myself again and again and again and again. And then I had one doctor say to me “Are you even listening to me” because I wouldn’t look him in the face. I will do anything not to go back to hospital… I need that doctor who understands me and what I’m doing and why I’m doing what I’m doing. Some of the things I do [are] because I’m autistic, not because I need medication…190
9.3 Another Participant recalled a traumatic and discriminatory experience after disclosing her diagnosis in hospital:
When I was having my last child, I disclosed to the medical staff that I was autistic and as soon as I did so the medical people started talking about involving other government agencies such as child protection and the department of communities. This never happened with my other two children…191
9.4 The relationship between masking and access to services and supports was a common theme among Participants. One explained:
I’ve got a support worker and I’m masking for my support worker… she just wants me to be like her and so I try to be like her and then she goes at lunchtime, and I just, collapse. I’m exhausted.192
9.5 Another Participant told WWDA:
I’ve gone into medical appointments and I have been unmasked, so I’m not making eye contact or I might be stimming, and the person has actually treated me as if I am less of an autonomous person who can make decisions for myself… To the extent where my GP discharged me from care because… I think she just went: this is a neurodivergent, Autistic person who has support needs. I don’t want to deal with this. I don’t want you to be a patient of mine…. I had gone into that situation thinking well, this is a medical practitioner, this is a safe place for me to be more unmasked. And it was not.193
9.6 Whether or not someone has obtained a diagnosis may also impact their access to and experience of services. One Participant described being discharged from their general practitioner’s care after disclosing their Autism diagnosis and diagnostic report:
She had read the quantitative report that was following the medical model, the deficit model. So she read all of that and went: “I don’t want to deal with this person”. 194
9.7 Prior to diagnosis, one Participant recalled feeling that health professionals perceived her as “dramatic”:
I feel extremely vulnerable in medical settings, which I think is a combination of medical trauma, sensory overload, and phobias. I’ve always felt that medical professionals perceive me as overly emotional or dramatic. They often ask “why are you crying?”, or “why do you need your partner here?”, or minimise my experience of pain. I remember getting an annual check up on my IUD. Even though I had a history of chronic pelvic pain and anxiety, the doctor couldn’t understand why I was distressed about an internal pelvic exam. It wasn’t until I told her that I was exploring diagnosis for Autism that she let my partner stay in the room.195
9.8 Participants also reflected on having to choose which one of their identities or diagnoses they would prioritise when seeking healthcare:
I’ve never really experienced a trans-affirming healthcare provider before… [they have] misgendered me, not understood, not really wanted to deal with it. And so I wouldn’t seek out trans-affirming healthcare from them. My main priority is neuro-affirming, and can deal with the chronic illnesses, and most importantly, will [they] prescribe my medication. 196
9.9 This is consistent with Australian research on Autistic people’s access to healthcare, which identified that Autistic adults who are gender-diverse experience additional barriers.197
9.10 A missed or late diagnosis may also cause an individual to engage in therapies or support services that are not tailored to their unique needs as an Autistic person. Many Autistic adults report that they do not benefit from standard psychological therapies, such as Cognitive Behavioural Therapy.198 Participants therefore reflected upon misdiagnosis as a barrier to appropriate therapeutic approaches:
I was just told that I have social anxiety… And I always… felt so much frustration. Because with social anxiety you’re told, like with anxiety in general, it’s like exposure therapy, right? You do it and it gets easier… It was like “I’m putting myself out here, I’m trying really hard. It’s not going away and it isn’t getting easier”… Now having received my diagnosis, I understand. It’s never gonna get easier, but that’s OK. And I feel like I have a lot more acceptance with it, as opposed to just feeling like there’s something wrong with me and I’m not trying hard enough to fix it, because I’m told that it can be fixed.199
9.11 Another Participant recalled:
Before my Autism diagnosis, I remember being so frightened by loud noises that a psychiatrist told me to smash plates, so that I could desensitise myself. Now I know that CBT and exposure therapy won’t change the way my brain processes sensory input 200
9.12 A Participant who had received multiple misdiagnoses described:
My whole life they’ve told me this is who I am. And that’s why I’m doing the things that I’m doing, and just medicate, medicate, medicate, and medicate. Try this. Try that. And did you know, I even had one doctor tell me I was a lost cause.201
9.13 Having regard to the significant health concerns that Autistic women, girls and non-binary people experience, their access to appropriate care, supports and services requires urgent attention.
9.14 Further, access to disability-specific support and funding, such as the National Disability Insurance Scheme (NDIS), is hindered by diagnostic gender bias. Across Australia, Autistic NDIS participants make up 35% of total participants, but 70% of those participants are male.202 As outlined above, Autistic women and girls who obtain an Autism diagnosis are likely to exhibit greater impairment in everyday life than Autistic males. If Autistic men and boys make up the majority of Autistic NDIS participants, it is likely that there are many undiagnosed Australian women and girls experiencing significant challenges without government-funded support:
Basically, they said, “well, no, you’re married, you’ve got a job, you’re buying a home, the impact on you is not significant enough”… Just because I’ve got my mum and my dad and my sister and back then my husband who will pick up for me when I… fall over, which is get becoming more and more regular, doesn’t mean I don’t need help. It doesn’t mean I’m not significantly impacted… I haven’t reapplied, I don’t know if I want to be put through that all again, because you know, getting all the evidence and stuff like that. So I actually don’t have any form of support at the moment. And I don’t know if I’ll ever be ready to try again, because it’s really traumatic. And to be told that was basically humiliating, and it’s really impacted me a lot.203
9.15 Participants who did receive NDIS funding spoke about the positive impact it had had on their lives, including in relation to access to services, capacity building, and engaging in community:
I’ve got an NDIS plan now and I have support workers come. And I’ve started my own business… but if I’d had that a lot earlier, like I think about what my life would be like. It would be really different. And maybe I would have been able to get help much earlier to even have relationships with other people… I never even really had a birthday party until last year when I was 62, and that really only happened because I had help… Through my NDIS, I’ve met people and I learned about how to be around other people. We got together and I had a birthday party. 62! My first real big party!204
9.16 However, one Participant expressed a fear of having her funding removed and being left with nothing:
Especially as I get closer to 65, I’m really scared that they’ll take that away from me and I’ll just be left with nothing again… If they take this away from me, and they leave me with nothing, I don’t want to be here anymore. My mom is in her 90s. She’s gonna be gone soon. Who else? So take that away from me, who else is there? Who else is going to help me navigate things?205
9.17 Another Participant echoed a feeling of insecurity as an NDIS Participant:
I’m worried that, because I don’t present “stereotypically”, someone might decide I’m not Autistic enough and remove the funding. I attended an NDIS meeting recently in support of someone else and I was scared that how I presented when I advocated for them would mean the NDIS would decide I wasn’t disabled enough. Even the other day, I received a letter about my current plan and funding being continued for a further 12 months, and because it didn’t explicitly say that my funding would be renewed, I was scared that they just meant I had to make my existing funds last for another year. Autistic people often interpret language literally, so it’s important to be clear.206
9.18 Others expressed difficulty using their funding and accessing the right supports, and feeling overwhelmed by the process:
I’m still navigating the whole NDIS thing…. It’s a lot of work actually to have an NDIS plan. And I don’t think it should be that much work, but it is.207
9.19 One Participant also recalled a traumatic experience they had had with an NDIS funded support worker, and how difficult it had been to find a support worker they felt safe with:
It’s tricky… finding a support worker who’s going to understand that I’m not just autistic, that I am non-binary, and I am queer and that I’m allowed to be, that’s who I am. I had this support worker come in last year, from this agency that I had started working with, and she kept misgendering me, like saying to me, “no, you can’t be a ‘they’, you have to be ‘she’ or ‘her”’. Like “no, ‘they’, that that’s my pronoun”. She said “No, you gotta be ‘she’ or ‘her”’. And then when she found out that I was queer, like she wanted to pray over me all the time… There’s nothing wrong with who I am. You know, that was really traumatic and it took me ages to let anybody else in through the front door.208
FOI! 24/25-1567
APPLIED BEHAVIOURAL ANALYSIS
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10. APPLIED BEHAVIOURAL ANALYSIS
10.1 A final theme emerging from the research conducted is the potential for poor mental health outcomes associated with Applied Behavioural Analysis (ABA). ABA is one of the most prevalent early childhood interventions recommended by clinicians when children receive an Autism diagnosis.209 Therapists seek to modify behaviour with the use of a rewards-based model, to promote behaviours that clinicians consider appropriate. While ABA is most prevalent in the United States, it has a continued presence in Australia.
10.2 In addition to being the most common early childhood intervention, it is also the intervention with the highest ratings of post-traumatic stress symptoms in both children and adults.210 A 2017 study of Autistic adults and caregivers of Autistic children found that exposure to ABA predicted a higher rate of, and more severe, post-traumatic stress symptoms in participants.211 Respondents who were exposed to ABA were 86% more likely to meet the criteria for Post-traumatic Stress Disorder (PTSD) than those who were not exposed to ABA. 212 For Autistic respondents, increased duration of exposure to ABA was associated with greater severity in post-traumatic stress symptoms.213 Based on the findings of the study, the researchers predicted that nearly half of Autistic children exposed to ABA would be expected to meet the diagnostic criteria for PTSD just four weeks after commencing ABA.214
10.3 Although the utility and ethics of ABA are debated by clinicians and behaviour analysts, the voices of Autistic individuals must be paramount. WWDA strongly condemns any practices that deny people with disability self-determination and autonomy. Although practitioners no longer rely on punishment for behaviour modification, ABA was founded on the goal of making Autistic individuals “indistinguishable” from the non-Autistic population.215 Whether this remains an implied or explicit goal of ABA, causing an Autistic person to suppress their natural tendencies in order to adapt to non-Autistic forms of interaction is cruel and damaging. It is also crucial to acknowledge the harmful historical origins of ABA, and its connections to LGBQTIA+ conversion therapy practices.216 While LGBQTIA+ conversion practices have been broadly condemned in Australia, and outlawed in several states and territories, ABA continues to hold its status as a valid therapy. WWDA calls for the condemnation of Autistic conversion practices with the same rigour.
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11. ENDNOTES
- Committee on the Rights of Persons with Disabilities, General Comment No. 7 on the Participation of Persons with Disabilities, Including Children with Disabilities, through Their Representative Organizations, in the Implementing and Monitoring of the Convention, UN Doc CRPD/C/GC/7 (9 November 2018).
- Becerra, T. A., von Ehrenstein, O. S., Heck, J. E., Olsen, J., Arah, O. A., Jeste, S. S., Rodriguez, M., & Ritz, B. (2014). Autism spectrum disorders and race, ethnicity, and nativity: a population-based study. Pediatrics, 134(1), e63–e71.
- See, for example, Navarro-Pardo, E., López-Ramón, F., Alonso-Esteban, Y., & Alcantud-Marín, F. (2021). Diagnostic Tools for Autism Spectrum Disorders by Gender: Analysis of Current Status and Future Lines. Children (Basel, Switzerland), 8(4), 262; Aylward, B. S., Gal-Szabo, D. E., & Taraman, S. (2021). Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder. Journal of developmental and behavioral pediatrics : JDBP, 42(8), 682–689.
- National Disability Insurance Scheme (2020) ‘Outcomes for participants with Autism Spectrum Disorder.’
- See, for example: Ratto, A. B., Kenworthy, L., Yerys, B. E., Bascom, J., Wieckowski, A. T., White, S. W., Wallace, G. L., Pugliese, C., Schultz, R. T., Ollendick, T. H., Scarpa, A., Seese, S., Register-Brown, K., Martin, A., & Anthony, L. G. (2018). What About the Girls? Sex-Based Differences in Autistic Traits and Adaptive Skills. Journal of autism and developmental disorders, 48(5), 1698–1711.
- O’Dell, L.; Bertilsdotter Rosqvist, H.; Ortega, F.; Brownlow, C.; Orsini, M (2016). Critical autism studies: exploring epistemic dialogues and intersections, challenging dominant understandings of autism. Disability & Society, 31(2) pp. 166–179.
- McCrossin, R. (2022). Finding the True Number of Females with Autistic Spectrum Disorder by Estimating the Biases in Initial Recognition and Clinical Diagnosis. Children (Basel, Switzerland), 9(2), 272.
- D’Mello, A. M., Frosch, I. R., Li, C. E., Cardinaux, A. L., & Gabrieli, J. D. E. (2022). Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment-to-research pipeline. Autism Research, 15( 10), 1929– 1940.
- D’Mello, A. M., Frosch, I. R., Li, C. E., Cardinaux, A. L., & Gabrieli, J. D. E. (2022). Exclusion of females in autism research: Empirical evidence for a “leaky” recruitment-to-research pipeline. Autism Research, 15( 10), 1929– 1940.
- Cumin, J., Pelaez, S., & Mottron, L. (2022). Positive and differential diagnosis of autism in verbal women of typical intelligence: A Delphi study. Autism : the international journal of research and practice, 26(5), 1153–1164.
- Burrows, C. A., Grzadzinski, R. L., Donovan, K., Stallworthy, I. C., Rutsohn, J., St John, T., Marrus, N., Parish-Morris, J., MacIntyre, L., Hampton, J., Pandey, J., Shen, M. D., Botteron, K. N., Estes, A. M., Dager, S. R., Hazlett, H. C., Pruett, J. R., Jr, Schultz, R. T., Zwaigenbaum, L., Truong, K. N., … IBIS Network (2022). A Data-Driven Approach in an Unbiased Sample Reveals Equivalent Sex Ratio of Autism Spectrum Disorder-Associated Impairment in Early Childhood. Biological psychiatry, 92(8), 654–662; Posserud MB, Skretting Solberg B, Engeland A, et al. Male to female ratios in autism spectrum disorders by age, intellectual disability and attention-deficit/hyperactivity disorder. Acta Psychiatr Scand 2021; 144(6): 635–646.
- Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What Is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis. Journal of the American Academy of Child and Adolescent Psychiatry, 56(6), 466–474.
- Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What Is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis. Journal of the American Academy of Child and Adolescent Psychiatry, 56(6), 466–474.
- Rutherford M, McKenzie K, Johnson T, et al. Gender ratio in a clinical population sample, age of
diagnosis and duration of assessment in children and adults with autism spectrum disorder. Autism : the International Journal of Research and Practice. 2016 Jul;20(5):628-634. 15. Rutherford M, McKenzie K, Johnson T, et al. Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder. Autism : the International Journal of Research and Practice. 2016 Jul;20(5):628-634. 16. Dworzynski, K., Ronald, A., Bolton, P., & Happé, F. (2012). How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders?. Journal of the American Academy of Child and Adolescent Psychiatry, 51(8), 788–797. 17. Ratto, A. B., Kenworthy, L., Yerys, B. E., Bascom, J., Wieckowski, A. T., White, S. W., Wallace, G. L., Pugliese, C., Schultz, R. T., Ollendick, T. H., Scarpa, A., Seese, S., Register-Brown, K., Martin, A., & Anthony, L. G. (2018). What About the Girls? Sex-Based Differences in Autistic Traits and Adaptive Skills. Journal of autism and developmental disorders, 48(5), 1698–1711. 18. Dworzynski, K., Ronald, A., Bolton, P., & Happé, F. (2012). How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders?. Journal of the American Academy of Child and Adolescent Psychiatry, 51(8), 788–797. 19. Dworzynski, K., Ronald, A., Bolton, P., & Happé, F. (2012). How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders?. Journal of the American Academy of Child and Adolescent Psychiatry, 51(8), 788–797. 20. World Health Organization (2023, March 29). Autism Fact Sheet. Retrieved June 5, 2023, from https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders 21. United Nations General Assembly, Convention on the Rights of Persons with Disabilities, 24 January 2007. 22. Arnold, S. R., Bruce, G., Weise, J., Mills, C. J., Trollor, J. N., & Coxon, K. (2023). Barriers to healthcare for Australian autistic adults. Autism, https://doi.org/10.1177/13623613231168444. 23. Jones, S., Muhammad, A., Murphy, N., Paul, M. & Vickers, N. (2018). Australia’s Attitudes & Behaviours towards Autism and Experiences of Autistic People and their Families: Autism and Education. https://www.amaze.org.au/creating-change/research/community-attitudes-education/#:~:text=We%20know%20that%20Autistic%20students,as%20students’%20needs%20remain%20unmet. 24. Jones, S., Muhammad, A., Murphy, N., Paul, M. & Vickers, N. (2018). Australia’s Attitudes & Behaviours towards Autism and Experiences of Autistic People and their Families: Autism and Education. https://www.amaze.org.au/creating-change/research/community-attitudes-education/#:~:text=We%20know%20that%20Autistic%20students,as%20students’%20needs%20remain%20unmet; Amaze. (2018). Position Statement – Autistic Women and Girls, www.amaze.org.au. 25. Jones, S., Muhammad, A., Murphy, N., Paul, M. & Vickers, N. (2019). Australia’s Attitudes & Behaviours towards Autism and Experiences of Autistic People and their Families: Autism and Employment. https://www.amaze.org.au/wp-content/uploads/2019/06/Employment-Community-Attitudes-and-Lived-Experiences-Research-Report_FINAL.pdf. 26. Amaze. (2021). A fair and accessible criminal justice system for autistic people, Submission to the Parliamentary Inquiry into Victoria’s Criminal Justice System. 27. Senate Select Committee on Autism, Parliament of Australia. (2022). Services, support and life outcomes for autistic Australians, Ch 16. 28. Senate Select Committee on Autism, Parliament of Australia. (2022). Services, support and life outcomes for autistic Australians, Ch 16. 29. See e.g., Frohmader, C.; Dowse, L.; Didi, A., op.cit; Disabled People’s Organisations Australia and the National Women’s Alliances, The Status of Women and Girls with Disability in Australia, Position Statement to the Commission on the Status of Women (CSW) Twenty-Fifth Anniversary of the Fourth World Conference on Women and the Beijing Declaration and Platform for Action 1995, Women With Disabilities Australia, 2019, pages 23-28. 30. Cazalis, F., Reyes, E., Leduc, S., & Gourion, D. (2022). Evidence That Nine Autistic Women Out of Ten Have Been Victims of Sexual Violence. Frontiers in behavioral neuroscience, 16, 852203.
- United Nations General Assembly, Convention on the Rights of Persons with Disabilities, 24 January 2007.
- Loomes R, Hull L, Mandy WPL, What is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis, Journal of the American Academy of Child & Adolescent Psychiatry (2017), doi: 10.1016/j.jaac.2017.03.013.
- Bargiela, S., Steward, R., & Mandy, W. (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal of autism and developmental disorders, 46(10), 3281–3294.
- Transcript of interview with Participant.
- Halladay, A. K., Bishop, S., Constantino, J. N., Daniels, A. M., Koenig, K., Palmer, K., Messinger, D., Pelphrey, K., Sanders, S. J., Singer, A. T., Taylor, J. L., & Szatmari, P. (2015). Sex and gender differences in autism spectrum disorder: summarizing evidence gaps and identifying emerging areas of priority. Molecular autism, 6, 36.
- Chawarska, K., Paul, R., Klin, A., Hannigen, S., Dichtel, L. E., & Volkmar, F. (2007). Parental recognition of developmental problems in toddlers with autism spectrum disorders. Journal of autism and developmental disorders, 37(1), 62–72.
- American Psychiatric Association. (2022). Neurodevelopmental disorders. In Diagnostic and statistical manual of mental disorders (5th ed., text rev.).
- Geelhand, P., Bernard, P., Klein, O., van Tiel, B., & Kissine, M. (2019). The role of gender in the perception of autism symptom severity and future behavioral development. Molecular autism, 10, 16.
- Geelhand, P., Bernard, P., Klein, O., van Tiel, B., & Kissine, M. (2019). The role of gender in the perception of autism symptom severity and future behavioral development. Molecular autism, 10, 16.
- Geelhand, P., Bernard, P., Klein, O., van Tiel, B., & Kissine, M. (2019). The role of gender in the perception of autism symptom severity and future behavioral development. Molecular autism, 10, 16.
- Transcript of interview with Participant.
- Pearson, A., & Rose, K. (2021). A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice. Autism in adulthood : challenges and management, 3(1), 52–60.
- Transcript of interview with Participant.
- Transcript of interview with Participant.
- Loomes R, Hull L, Mandy WPL, What is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis, Journal of the American Academy of Child & Adolescent Psychiatry (2017), doi: 10.1016/j.jaac.2017.03.013.
- American Psychiatric Association. (2022). Neurodevelopmental disorders. In Diagnostic and statistical manual of mental disorders (5th ed., text rev.).
- Cumin, J., Pelaez, S., & Mottron, L. (2022). Positive and differential diagnosis of autism in verbal women of typical intelligence: A Delphi study. Autism : the international journal of research and practice, 26(5), 1153–1164.
- American Psychiatric Association. (2022). Neurodevelopmental disorders. In Diagnostic and statistical manual of mental disorders (5th ed., text rev.).
- Wijngaarden-Cremers, P., van Eeten, E., Groen, W., Deurzen, P., Oosterling, I., & Gaag, R. (2013). Gender and Age Differences in the Core Triad of Impairments in Autism Spectrum Disorders: A Systematic Review and Meta-analysis. Journal of autism and developmental disorders, 44(3).
- Transcript of interview with Participant.
- Parish-Morris, J., Liberman, M. Y., Cieri, C., Herrington, J. D., Yerys, B. E., Bateman, L., Donaher, J., Ferguson, E., Pandey, J., & Schultz, R. T. (2017). Linguistic camouflage in girls with autism spectrum disorder. Molecular autism, 8, 48.
- American Psychiatric Association. (2022). Neurodevelopmental disorders. In Diagnostic and
statistical manual of mental disorders (5th ed., text rev.). 53. Sedgewick, F., Hill, V., Yates, R., Pickering, L., & Pellicano, E. (2016). Gender Differences in the Social Motivation and Friendship Experiences of Autistic and Non-autistic Adolescents. Journal of autism and developmental disorders, 46(4), 1297–1306. 54. Sedgewick, F., Hill, V., Yates, R., Pickering, L., & Pellicano, E. (2016). Gender Differences in the Social Motivation and Friendship Experiences of Autistic and Non-autistic Adolescents. Journal of autism and developmental disorders, 46(4), 1297–1306. 55. Wood-Downie, H., Wong, B., Kovshoff, H., Mandy, W., Hull, L., & Hadwin, J. A. (2021). Sex/Gender Differences in Camouflaging in Children and Adolescents with Autism. Journal of autism and developmental disorders, 51(4), 1353–1364. 56. Mattern, H., Cola, M., Tena, K. G., Knox, A., Russell, A., Pelella, M. R., Hauptmann, A., Covello, M., Parish-Morris, J., & McCleery, J. P. (2023). Sex differences in social and emotional insight in youth with and without autism. Molecular autism, 14(1), 10. 57. Harrop, C., Jones, D. R., Sasson, N. J., Zheng, S., Nowell, S. W., & Parish-Morris, J. (2020). Social and Object Attention Is Influenced by Biological Sex and Toy Gender-Congruence in Children With and Without Autism. Autism research : official journal of the International Society for Autism Research, 13(5), 763–776. 58. Cola, M., Yankowitz, L. D., Tena, K., Russell, A., Bateman, L., Knox, A., Plate, S., Cubit, L. S., Zampella, C. J., Pandey, J., Schultz, R. T., & Parish-Morris, J. (2022). Friend matters: sex differences in social language during autism diagnostic interviews. Molecular autism, 13(1), 5. 59. Cola, M., Yankowitz, L. D., Tena, K., Russell, A., Bateman, L., Knox, A., Plate, S., Cubit, L. S., Zampella, C. J., Pandey, J., Schultz, R. T., & Parish-Morris, J. (2022). Friend matters: sex differences in social language during autism diagnostic interviews. Molecular autism, 13(1), 5. 60. Cola, M., Yankowitz, L. D., Tena, K., Russell, A., Bateman, L., Knox, A., Plate, S., Cubit, L. S., Zampella, C. J., Pandey, J., Schultz, R. T., & Parish-Morris, J. (2022). Friend matters: sex differences in social language during autism diagnostic interviews. Molecular autism, 13(1), 5. 61. Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A., & Baron-Cohen, S. (2016). An investigation of the ‘female camouflage effect’ in autism using a computerized ADOS-2 and a test of sex/gender differences. Molecular autism, 7, 10. 62. Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A., & Baron-Cohen, S. (2016). An investigation of the ‘female camouflage effect’ in autism using a computerized ADOS-2 and a test of sex/gender differences. Molecular autism, 7, 10. 63. Parish-Morris, J., Liberman, M. Y., Cieri, C., Herrington, J. D., Yerys, B. E., Bateman, L., Donaher, J., Ferguson, E., Pandey, J., & Schultz, R. T. (2017). Linguistic camouflage in girls with autism spectrum disorder. Molecular autism, 8, 48. 64. Parish-Morris, J., Liberman, M. Y., Cieri, C., Herrington, J. D., Yerys, B. E., Bateman, L., Donaher, J., Ferguson, E., Pandey, J., & Schultz, R. T. (2017). Linguistic camouflage in girls with autism spectrum disorder. Molecular autism, 8, 48. 65. Parish-Morris, J., Liberman, M. Y., Cieri, C., Herrington, J. D., Yerys, B. E., Bateman, L., Donaher, J., Ferguson, E., Pandey, J., & Schultz, R. T. (2017). Linguistic camouflage in girls with autism spectrum disorder. Molecular autism, 8, 48. 66. Harrop, C., Gulsrud, A., & Kasari, C. (2015). Does Gender Moderate Core Deficits in ASD? An Investigation into Restricted and Repetitive Behaviors in Girls and Boys with ASD. Journal of autism and developmental disorders, 45(11), 3644–3655. 67. Harrop, C., Gulsrud, A., & Kasari, C. (2015). Does Gender Moderate Core Deficits in ASD? An Investigation into Restricted and Repetitive Behaviors in Girls and Boys with ASD. Journal of autism and developmental disorders, 45(11), 3644–3655. 68. Navarro-Pardo E, López-Ramón MF, Alonso-Esteban Y, Alcantud-Marín F. Diagnostic Tools for Autism Spectrum Disorders by Gender: Analysis of Current Status and Future Lines. Children. 2021;
8(4):262. 69. See, for example, discussion in Wijngaarden-Cremers, P., van Eeten, E., Groen, W., Deurzen, P., Oosterling, I., & Gaag, R. (2013). Gender and Age Differences in the Core Triad of Impairments in Autism Spectrum Disorders: A Systematic Review and Meta-analysis. Journal of autism and developmental disorders, 44(3). 70. Harrop, C., Jones, D. R., Sasson, N. J., Zheng, S., Nowell, S. W., & Parish-Morris, J. (2020). Social and Object Attention Is Influenced by Biological Sex and Toy Gender-Congruence in Children With and Without Autism. Autism research : official journal of the International Society for Autism Research, 13(5), 763–776. 71. Navarro-Pardo, E., López-Ramón, F., Alonso-Esteban, Y., & Alcantud-Marín, F. (2021). Diagnostic Tools for Autism Spectrum Disorders by Gender: Analysis of Current Status and Future Lines. Children (Basel, Switzerland), 8(4), 262. 72. Harrop, C., Gulsrud, A., & Kasari, C. (2015). Does Gender Moderate Core Deficits in ASD? An Investigation into Restricted and Repetitive Behaviors in Girls and Boys with ASD. Journal of autism and developmental disorders, 45(11), 3644–3655. 73. Transcript of interview with Participant. 74. Transcript of interview with Participant. 75. Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A., & Baron-Cohen, S. (2016). An investigation of the ‘female camouflage effect’ in autism using a computerized ADOS-2 and a test of sex/gender differences. Molecular autism, 7, 10. 76. Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A., & Baron-Cohen, S. (2016). An investigation of the ‘female camouflage effect’ in autism using a computerized ADOS-2 and a test of sex/gender differences. Molecular autism, 7, 10. 77. Pearson, A., & Rose, K. (2021). A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice. Autism in adulthood : challenges and management, 3(1), 52–60. 78. Ros-Demarize, R., Bradley, C., Kanne, S. M., Warren, Z., Boan, A., Lajonchere, C., Park, J., & Carpenter, L. A. (2020). ASD symptoms in toddlers and preschoolers: An examination of sex differences. Autism research : official journal of the International Society for Autism Research, 13(1), 157–166. 79. Lai, M. C., Lombardo, M. V., Ruigrok, A. N., Chakrabarti, B., Auyeung, B., Szatmari, P., Happé, F., Baron-Cohen, S., & MRC AIMS Consortium (2017). Quantifying and exploring camouflaging in men and women with autism. Autism : the international journal of research and practice, 21(6), 690–702. 80. Transcript of interview with Participant. 81. Transcript of interview with Participant. 82. Cola, M., Yankowitz, L. D., Tena, K., Russell, A., Bateman, L., Knox, A., Plate, S., Cubit, L. S., Zampella, C. J., Pandey, J., Schultz, R. T., & Parish-Morris, J. (2022). Friend matters: sex differences in social language during autism diagnostic interviews. Molecular autism, 13(1), 5. 83. Cumin, J., Pelaez, S., & Mottron, L. (2022). Positive and differential diagnosis of autism in verbal women of typical intelligence: A Delphi study. Autism : the international journal of research and practice, 26(5), 1153–1164. 84. Cumin, J., Pelaez, S., & Mottron, L. (2022). Positive and differential diagnosis of autism in verbal women of typical intelligence: A Delphi study. Autism : the international journal of research and practice, 26(5), 1153–1164. 85. Cola, M., Yankowitz, L. D., Tena, K., Russell, A., Bateman, L., Knox, A., Plate, S., Cubit, L. S., Zampella, C. J., Pandey, J., Schultz, R. T., & Parish-Morris, J. (2022). Friend matters: sex differences in social language during autism diagnostic interviews. Molecular autism, 13(1), 5. 86. Transcript of interview with Participant. 87. Napolitano, A., Schiavi, S., La Rosa, P., Rossi-Espagnet, M. C., Petrillo, S., Bottino, F., Tagliente, E., Longo, D., Lupi, E., Casula, L., Valeri, G., Piemonte, F., Trezza, V., & Vicari, S. (2022). Sex Differences in Autism Spectrum Disorder: Diagnostic, Neurobiological, and Behavioral Features. Frontiers in
psychiatry, 13, 889636. 88. Napolitano, A., Schiavi, S., La Rosa, P., Rossi-Espagnet, M. C., Petrillo, S., Bottino, F., Tagliente, E., Longo, D., Lupi, E., Casula, L., Valeri, G., Piemonte, F., Trezza, V., & Vicari, S. (2022). Sex Differences in Autism Spectrum Disorder: Diagnostic, Neurobiological, and Behavioral Features. Frontiers in psychiatry, 13, 889636. 89. Gesi, C., Migliarese, G., Torriero, S., Capellazzi, M., Omboni, A. C., Cerveri, G., & Mencacci, C. (2021). Gender Differences in Misdiagnosis and Delayed Diagnosis among Adults with Autism Spectrum Disorder with No Language or Intellectual Disability. Brain sciences, 11(7), 912. 90. Hull, L., Mandy, W., Lai, M. C., Baron-Cohen, S., Allison, C., Smith, P., & Petrides, K. V. (2019). Development and Validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q). Journal of autism and developmental disorders, 49(3), 819–833. 91. Pearson, A., & Rose, K. (2021). A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice. Autism in adulthood : challenges and management, 3(1), 52–60. 92. Transcript of interview with Participant. 93. Transcript of interview with Participant. 94. Transcript of interview with Participant. 95. Transcript of interview with Participant. 96. Postorino, V., Fatta, L. M., De Peppo, L., Giovagnoli, G., Armando, M., Vicari, S., & Mazzone, L. (2015). Longitudinal comparison between male and female preschool children with autism spectrum disorder. Journal of autism and developmental disorders, 45(7), 2046–2055. 97. Ros-Demarize, R., Bradley, C., Kanne, S. M., Warren, Z., Boan, A., Lajonchere, C., Park, J., & Carpenter, L. A. (2020). ASD symptoms in toddlers and preschoolers: An examination of sex differences. Autism research : official journal of the International Society for Autism Research, 13(1), 157–166. 98. Rynkiewicz, A., Schuller, B., Marchi, E., Piana, S., Camurri, A., Lassalle, A., & Baron-Cohen, S. (2016). An investigation of the ‘female camouflage effect’ in autism using a computerized ADOS-2 and a test of sex/gender differences. Molecular autism, 7, 10. 99. Pearson, A., & Rose, K. (2021). A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice. Autism in adulthood : challenges and management, 3(1), 52–60. 100. Rose K. (2020). How to hide your autism. Star Institute for Sensory Processing. STAR Institute. 101. Kassee, C., Babinski, S., Tint, A. et al. Physical health of autistic girls and women: a scoping review. Molecular Autism 11, 84 (2020). 102. Bargiela, S., Steward, R., & Mandy, W. (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal of autism and developmental disorders, 46(10), 3281–3294. 103. Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular autism, 9, 42. 104. Pearson, A., & Rose, K. (2021). A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice. Autism in adulthood : challenges and management, 3(1), 52–60. 105. Rieffe, C., O’Connor, R., Bülow, A., Willems, D., Hull, L., Sedgewick, F., Stockmann, L., & Blijd-Hoogewys, E. (2021). Quantity and quality of empathic responding by autistic and non-autistic adolescent girls and boys. Autism : the international journal of research and practice, 25(1), 199–209. 106. Bons D., van den Broek E., Scheepers F., Herpers P., Rommelse N., Buitelaaar J. K. (2013). Motor, emotional, and cognitive empathy in children and adolescents with autism spectrum disorder and conduct disorder. Journal of Abnormal Child Psychology, 41, 425–443. 107. Transcript of interview with Participant. 108. Rieffe, C., O’Connor, R., Bülow, A., Willems, D., Hull, L., Sedgewick, F., Stockmann, L., & Blijd-Hoogewys, E. (2021). Quantity and quality of empathic responding by autistic and non-autistic adolescent girls and boys. Autism : the international journal of research and practice, 25(1), 199–209.
109 Rieffe, C., O’Connor, R., Bülow, A., Willems, D., Hull, L., Sedgewick, F., Stockmann, L., & Blijd- Hoogewys, E. (2021). Quantity and quality of empathic responding by autistic and non-autistic adolescent girls and boys. Autism : the international journal of research and practice, 25(1), 199–209.
110 Rieffe, C., O’Connor, R., Bülow, A., Willems, D., Hull, L., Sedgewick, F., Stockmann, L., & Blijd- Hoogewys, E. (2021). Quantity and quality of empathic responding by autistic and non-autistic adolescent girls and boys. Autism : the international journal of research and practice, 25(1), 199–209.
111 Sedgewick, F., Hill, V., & Pellicano, E. (2019). ‘It’s different for girls’: Gender differences in the friendships and conflict of autistic and neurotypical adolescents. Autism : the international journal of research and practice, 23(5), 1119–1132.
112 Stroth, S., Paye, L., Kamp-Becker, I., Wermter, A. K., Krach, S., Paulus, F. M., & Müller-Pinzler, L. (2019). Empathy in Females With Autism Spectrum Disorder. Frontiers in psychiatry, 10, 428.
113 Transcript of interview with Participant.
114 Milton, D. E. M. (2012) On the ontological status of autism: the ‘double empathy problem. Disability & Society, 27(6), 883-887.
115 Milton, D. E. M. (2012) On the ontological status of autism: the ‘double empathy problem. Disabiliy & Society, 27(6), 883-887.
116 Crompton, C.J., Sharp, M., Axbey, H., Fletcher-Watson, S., Flynn, E. G., Ropar, D. (2020). Neurotype- Matching, but Not Being Autistic, Influences Self and Observer Ratings of Interpersonal Rapport. Frontiers in Psychology, 11, https://www.frontiersin.org/articles/10.3389/fpsyg.2020.586171.
117 Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular autism, 9, 42.
118 Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular autism, 9, 42.
119 Lawson, W.B. (2020). Adaptive morphing and coping with social threat in autism: An autistic perspective. J Intellectual Disability Treat Diagnosis and Treatment, 8(8), 519–526.
120 Lawson, W.B. (2020). Adaptive morphing and coping with social threat in autism: An autistic perspective. J Intellectual Disability Treat Diagnosis and Treatment, 8(8), 519–526.
121 Pearson, A., & Rose, K. (2021). A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice. Autism in adulthood : challenges and management, 3(1), 52–60.
122 Transcript of interview with Participant.
123 Transcript of interview with Participant.
124 Transcript of interview with Participant.
125 Pearson, A., & Rose, K. (2021). A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice. Autism in adulthood : challenges and management, 3(1), 52–60.
126 Weir, E., Allison, C., & Baron-Cohen, S. (2021). The sexual health, orientation, and activity of autistic adolescents and adults. Autism Research, 14(11), 2342–2354.
127 Transcript of interview with Participant.
128 Transcript of interview with Participant.
129 Transcript of interview with Participant.
130 Transcript of interview with Participant.
131 Transcript of interview with Participant.
132 Cage, E., Di Monaco, J., & Newell, V. (2018). Experiences of Autism Acceptance and Mental Health in Autistic Adults. Journal of autism and developmental disorders, 48(2), 473–484.
133 Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular autism, 9, 42.
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134 Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular autism, 9, 42.
135 Cassidy, S., Bradley, L., Shaw, R., & Baron-Cohen, S. (2018). Risk markers for suicidality in autistic adults. Molecular autism, 9, 42.
136 Lupton, P. (2023, June 2). We Need to Talk About Autistic Burnout. Women With Disabilities Australia (Blog). https://wwda.org.au/blog/we-need-to-talk-about-autistic-burnout/; see also Oliver, M. (2023, May 30). Masking my autism has had a huge personal toll. Now, I’m taking the mask off. ABC Everyday. https://www.abc.net.au/everyday/autism-masking-personal-toll/102353290.
137 Miller, D., Rees, J., & Pearson, A. (2021). “Masking Is Life”: Experiences of Masking in Autistic and Nonautistic Adults. Autism in adulthood : challenges and management, 3(4), 330–338.
138 Miller, D., Rees, J., & Pearson, A. (2021). “Masking Is Life”: Experiences of Masking in Autistic and Nonautistic Adults. Autism in adulthood : challenges and management, 3(4), 330–338.
139 Hamdani, Y., Kassee, C., Walker, M., Lunsky, Y., Gladstone, B., Sawyer, A., Ameis, S. H., Desarkar, P., Szatmari, P., & Lai, M. C. (2023). Roadblocks and detours on pathways to a clinical diagnosis of autism for girls and women: A qualitative secondary analysis. Women’s health (London, England), 19, 17455057231163761.
140 Hamdani, Y., Kassee, C., Walker, M., Lunsky, Y., Gladstone, B., Sawyer, A., Ameis, S. H., Desarkar, P., Szatmari, P., & Lai, M. C. (2023). Roadblocks and detours on pathways to a clinical diagnosis of autism for girls and women: A qualitative secondary analysis. Women’s health (London, England), 19, 17455057231163761.
141 Fusar-Poli, L., Brondino, N., Politi, P., & Aguglia, E. (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder. European archives of psychiatry and clinical neuroscience, 272(2), 187–198.
142 Transcript of interview with Participant.
143 Transcript of interview with Participant.
144 Atherton, G., Edisbury, E., Piovesan, A., & Cross, L. (2022). Autism Through the Ages: A Mixed Methods Approach to Understanding How Age and Age of Diagnosis Affect Quality of Life. Journal of autism and developmental disorders, 52(8), 3639–3654.
145 Transcript of interview with Participant.
146 Jones, S., Muhammad, A., Murphy, N., Paul, M. & Vickers, N. (2018). Australia’s Attitudes & Behaviours towards Autism and Experiences of Autistic People and their Families: Autism and Education. https:// www.amaze.org.au/creating-change/research/community-attitudes-education/#:~:text=We%20 know%20that%20Autistic%20students,as%20students’%20needs%20remain%20unmet;
147 Transcript of interview with Participant.
148 Amaze. (2018). Position Statement – Autistic Women and Girls, www.amaze.org.au.
149 Arnold, S, Higgins, J., Weise, J., Desai, A., Pellicano, E. & Trollor, J. (2021). Investigating autistic burnout #AutBurnout: Final Report. Brisbane: Autism CRC.
150 Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout. Autism in adulthood : challenges and management, 2(2), 132–143.
151 Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout. Autism in adulthood : challenges and management, 2(2), 132–143.
152 Mantzalas, J., Richdale, A. L., Adikari, A., Lowe, J., & Dissanayake, C. (2022). What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms. Autism in adulthood : challenges and management, 4(1), 52–65; see also Arnold, S, Higgins, J., Weise, J., Desai, A., Pellicano, E. & Trollor, J. (2021). Investigating autistic burnout #AutBurnout: Final Report. Brisbane: Autism CRC.
153 Transcript of interview with Participant.
154 Transcript of interview with Participant.
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155 Transcript of interview with Participant.
156 Transcript of interview with Participant.
157 Bargiela, S., Steward, R., & Mandy, W. (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal of autism and developmental disorders, 46(10), 3281–3294.
158 Transcript of interview with Participant.
159 Cage, E., Di Monaco, J., & Newell, V. (2018). Experiences of Autism Acceptance and Mental Health in Autistic Adults. Journal of autism and developmental disorders, 48(2), 473–484.
160 Leedham, A., Thompson, A. R., Smith, R., & Freeth, M. (2020). ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135–146.
161 Bargiela, S., Steward, R., & Mandy, W. (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal of autism and developmental disorders, 46(10), 3281–3294.
162 Transcript of interview with Participant.
163 Transcript of interview with Participant.
164 Commonwealth of Australia, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. (2022). Public Hearing 31, Transcript of Proceedings (12 December 2022).
165 See, for example: Lai, M. C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., Szatmari, P., & Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis. The lancet. Psychiatry, 6(10), 819–829; Kassee, C., Babinski, S., Tint, A., Lunsky, Y., Brown, H. K., Ameis, S. H., Szatmari, P., Lai, M. C., & Einstein, G. (2020). Physical health of autistic girls and women: a scoping review. Molecular autism, 11(1), 84.
166 Lai, M. C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., Szatmari, P., & Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis. The lancet. Psychiatry, 6(10), 819–829.
167 Ratto, A. B., Kenworthy, L., Yerys, B. E., Bascom, J., Wieckowski, A. T., White, S. W., Wallace, G. L., Pugliese, C., Schultz, R. T., Ollendick, T. H., Scarpa, A., Seese, S., Register-Brown, K., Martin, A., & Anthony, L. G. (2018). What About the Girls? Sex-Based Differences in Autistic Traits and Adaptive Skills. Journal of autism and developmental disorders, 48(5), 1698–1711.
168 Hedley, D., Uljarević, M. Systematic Review of Suicide in Autism Spectrum Disorder: Current Trends and Implications. Curr Dev Disord Rep 5, 65–76 (2018).
169 Cassidy, S.A., Gould, K., Townsend, E. et al. Is Camouflaging Autistic Traits Associated with Suicidal Thoughts and Behaviours? Expanding the Interpersonal Psychological Theory of Suicide in an Undergraduate Student Sample. J Autism Dev Disord 50, 3638–3648 (2020).
170 Livingston, L. A., Shah, P., & Happé, F. (2019). Compensatory strategies below the behavioural surface in autism: a qualitative study. The lancet. Psychiatry, 6(9), 766–777.
171 Westwood, H., Tchanturia, K. Autism Spectrum Disorder in Anorexia Nervosa: An Updated Literature Review. Curr Psychiatry Rep 19, 41 (2017).
172 Cobbaert, L., Rose, A. (2023). Eating Disorders and Neurodivergence: A Stepped Care Approach.
173 Cobbaert, L., Rose, A. (2023). Eating Disorders and Neurodivergence: A Stepped Care Approach.
174 Transcript of interview with Participant.
175 Transcript of interview with Participant.
176 Cobbaert, L., Rose, A. (2023). Eating Disorders and Neurodivergence: A Stepped Care Approach.
177 Cobbaert, L., Rose, A. (2023). Eating Disorders and Neurodivergence: A Stepped Care Approach.
178 Kassee, C., Babinski, S., Tint, A., Lunsky, Y., Brown, H. K., Ameis, S. H., Szatmari, P., Lai, M. C., & Einstein, G. (2020). Physical health of autistic girls and women: a scoping review. Molecular autism, 11(1), 84.
179 Weir, E., Allison, C., Warrier, V., & Baron-Cohen, S. (2021). Increased prevalence of non-communicable physical health conditions among autistic adults. Autism : the international journal of research and practice, 25(3), 681–694.
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180 Kassee, C., Babinski, S., Tint, A., Lunsky, Y., Brown, H. K., Ameis, S. H., Szatmari, P., Lai, M. C., & Einstein, G. (2020). Physical health of autistic girls and women: a scoping review. Molecular autism, 11(1), 84.
181 Simantov, T., Pohl, A., Tsompanidis, A., Weir, E., Lombardo, M. V., Ruigrok, A., Smith, P., Allison, C., Baron- Cohen, S., & Uzefovsky, F. (2022). Medical symptoms and conditions in autistic women. Autism : the international journal of research and practice, 26(2), 373–388.
182 Casanova, E. L., Baeza-Velasco, C., Buchanan, C. B., & Casanova, M. F. (2020). The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders. Journal of personalized medicine, 10(4), 260.
183 Transcript of interview with Participant.
184 Transcript of interview with Participant.
185 Transcript of interview with Participant.
186 Cite
187 Arnold, S. R., Bruce, G., Weise, J., Mills, C. J., Trollor, J. N., & Coxon, K. (2023). Barriers to healthcare for Australian autistic adults. Autism, https://doi.org/10.1177/13623613231168444.
188 Transcript of interview with Participant.
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192 Transcript of interview with Participant.
193 Transcript of interview with Participant.
194 Transcript of interview with Participant.
195 Transcript of interview with Participant.
196 Transcript of interview with Participant.
197 Arnold, S. R., Bruce, G., Weise, J., Mills, C. J., Trollor, J. N., & Coxon, K. (2023). Barriers to healthcare for Australian autistic adults. Autism, https://doi.org/10.1177/13623613231168444.
198 Arnold, S, Higgins, J., Weise, J., Desai, A., Pellicano, E. & Trollor, J. (2021). Investigating autistic burnout #AutBurnout: Final Report. Brisbane: Autism CRC.
199 Transcript of interview with Participant.
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201 Transcript of interview with Participant.
202 National Disability Insurance Scheme, NDIS Quarterly report to disability ministers, 31 March 2023.
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207 Transcript of interview with Participant.
208 Transcript of Interview with Participant.
209 Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4.
210 Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4.
211 Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4.
212 Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4.
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213 Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4.
214 Kupferstein, H. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4.
215 Veneziano, J., & Shea, S. (2022). They have a Voice; are we Listening?. Behavior analysis in practice, 16(1), 127–144.
216 Conine, D., Campau, S., Petronelli, A. (2021). LGBTQ + conversion therapy and applied behavior analysis: A call to action. Journal of Applied Behavior Analysis, 55; see also Veneziano, J., & Shea, S. (2022). They have a Voice; are we Listening?. Behavior analysis in practice, 16(1), 127–144.
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Women With Disabilities Australia (WWDA)
Contact: Carolyn Frohmader, Executive Director PO BOX 407 Lenah Valley, Tasmania, 7008 Australia
+61 438 535 535 carolyn@wwda.org.au
www.wwda.org.au www.facebook.com/WWDA.Australia twitter.com/WWDA_AU
Women With Disabilities Australia (WWDA) has Special Consultative Status with the Economic and Social Council of the United Nations.
Awards
Winner National Human Rights Award 2001
Winner National Violence Prevention Award 1999
Winner Tasmanian Women’s Safety Award 2008
Nominee UNESCO Prize for Digital Empowerment of Persons with Disabilities 2021
Nominee French Republic’s Human Rights Prize 2003
Nominee UN Millennium Peace Prize for Women 2000
Certificate of Merit Australian Crime & Violence Prevention Awards 2008
Nominee National Disability Awards 2017
Finalist International Zero23 Award, Information and Communication Technologies (ICT)
Engaging with autistic people with an intellectual disability to develop the National Autism Strategy
A report for the Department of Social Services
June 2023
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