Submission to the Senate July 2020
autismcrc.com.au
1
Table of Contents
Summary of recommendations 4
Current approaches and barriers to consistent, timely (A) 6
and best practice autism diagnosis
The prevalence of autism in Australia (B) 10
Misdiagnosis and under representation of females in (C) 11
autism data, and gender bias in autism assessment and support services
International best practice with regards to diagnosis, (D) 13
support services and education, effectiveness, cost and required intensity
The interaction between services provided by the (F) 17
Commonwealth, state and local governments, including: (i) health and mental health, (ii) education, (iii) employment, (iv) justice, and (v) housing
The social and economic cost of failing to provide (G) 19
adequate and appropriate services, including to support key life stage transitions of autistic people
The adequacy and efficacy of the National Disability (H) 21
Insurance Scheme (NDIS) for autistic people, including: (ii) the utility of the Early Childhood Early Intervention (ECEI) Pathway for autistic children
The development of a National Autism Strategy and its (I) 23
interaction with the next phase of the National Disability
Strategy
The adequacy of funding for research into autism (J) 24
The social inclusion and participation of autistic people (K) 27
within the economy and community
The capacity and sustainability of advocacy, self- (L) 29
advocacy and self-determination supports for autistic people, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities References 30
Appendix 1 – Our Participants 32
2
Introduction
Autism CRC applauds the Senate for establishing Autism CRC’s cooperative research centre program the Senate Select Committee on Autism and thanks focuses on three main themes:
the Committee for the opportunity to make this • the Early Years – delivering a national protocolsubmission. for earlier, accurate assessment and diagnosis;
Autism is a collective term for a group of • the School Years – developing educationalneurodevelopmental conditions that affect social environments and programs, and equippinginteraction, communication, behaviours and teachers, to better support students’ social,interests. Every person on the autism spectrum is behavioural and academic development andunique. The developmental challenges and their success; andpresentation can vary widely in nature and severity
between individuals, and in the same individual • Adulthood – enhancing opportunities for
over time. Many people on the spectrum experience successful transition to post-school life and additional challenges with educational and participation in higher education, further training vocational attainment, physical and mental health and employment, and improving the health and and family functioning. wellbeing of people on the autism spectrum. Life outcomes for people on the autism spectrum FY21 is the final year that Commonwealth CRC and their families have been and continue to be funding is to be provided for that program. Autism far from optimal on many dimensions. Today, we CRC is presently securing a legacy operation better understand that it is often an individual’s beyond that time to address research priorities for co-occurring conditions, circumstance and a non- practice and policy determined by autism community inclusive community environment that are disabling. stakeholders. As a result, the significant strengths and interests of A list of the current participants in the Cooperative autistic individuals have often not been recognised Research Centre is given at Appendix 1. A number of and engaged for their and the community’s benefit. these will likely be making submissions to the Senate The Cooperative Research Centre for Living Select Committee in their own name. with Autism was established in 2013 under the This submission addresses the following Terms of Commonwealth Government’s Cooperative Reference: Research Centres (CRC) Program and the management of Autism CRC Ltd. It is the world’s A, B, C, D, F, G, H, I, J, K and L. first national collaboration between researchers, The Senate Select Committee Terms of Reference service providers, clinicians, education professionals, are broad-ranging, appropriate to an enquiry into government and the end-user community – autistic autism in Australia. Similarly, with a commitment to individuals and their families and carers – working research across the lifespan, Autism CRC’s research to develop and implement evidence-based and program and related activities are broad-ranging research-informed practice, products and policy that and of relevance to many of the Committee’s Terms deliver whole-of-life outcomes for people on the of Reference. This submission does not attempt to autism spectrum (see www.autismcrc.com.au). describe all activities being undertaken by Autism Autism CRC’s vision is to see: CRC. The details of Autism CRC’s program may be found through the Autism CRC website (www. autistic people empowered to use their diverse autismcrc.com.au), including its Annual Reports. strengths and interests, We would welcome the opportunity to speakthrough its mission to with Committee members on the matters in this motivate, facilitate and translate collaborative submission or other matters of relevance to the autism research, across the life-span and the Committee’s Terms of Reference. spectrum, underpinned by inclusive practices. As a national cooperative venture of stakeholders, Autism CRC is able to address significant areas of need identified by the community, industry and government; and, importantly, strategically invest in major research activities and the translation of outputs to effective practice and policy at a national scale. Examples are included in this submission.
3
Summary of recommendations
1. Fully implement the National Guideline for 11. Integrate within the framework of national
Assessment and Diagnosis of Autism in Australia education reforms of needs-based funding (National Guideline), across states and territories models, aligned individualised learning and and service systems (particularly health, Nationally Consistent Collection of Data (NCCD):
disability and education). i. information on comprehensive assessment of
individuals consistent with the National Guideline2. Implement the National Guideline for for Assessment and Diagnosis of Autism; and Assessment and Diagnosis of Autism in
collaboration with representatives from clinical ii. inclusive education principles and practices for
professions, service providers and community students provided with a multi-tiered system groups consistent with the way the Guideline of support and universal design for learning
in mainstream early childhood, primary and was developed. secondary education settings.
3. Develop a person-centred clinical care 12. Incorporate inclusive education principles and pathway centred on the National Guideline for practice as fundamental elements within existing Assessment and Diagnosis of Autism, integrating professional development and systematic neurodevelopmental surveillance and a national accountability frameworks for school leaders. quality framework for early intervention.
13. Commit resources to ongoing development4. Revise the Medicare Benefits Schedule to align and review of evidence for maintenance of a with the assessment and diagnosis process Quality Framework for Best Practice in Inclusive in the National Guideline for Assessment and Education. Diagnosis of Autism, including for adolescents
and adults. 14. Ensure major national practice and policy
initiatives affecting state and local government5. Rationalise assessment requirements and service sectors be coordinated at a national level funding mechanisms across service systems to through bodies such as the Council of Australian avoid duplication. Government’s Disability Reform Council.
6. Establish a national autism data register, with 15. Create National Guideline for Assessment and appropriate data linkages, to facilitate improved Diagnosis of Autism data linkages with other services, policy development and research, as service systems (e.g. health, education and well as individualised healthcare, interventions disability) with a view to the quality, consistency and supports. and efficiency benefits of access to permissioned
7. Implement the National Guideline for data for person-centred planning and supports
Assessment and Diagnosis of Autism – within these sectors.
noting the important consideration of factors 16. Upskill national clinical workforce in autism and of gender and gender diversity (Guideline the presentation and clinical management of co- Recommendations 61 and 62). occurring conditions as a matter of urgency.
8. Enhance existing tools, or develop new ones, 17. Develop and disseminate best-practice tools for use in the identification, assessment and and resources, including risk assessment tools, diagnosis of autism to account for presentation to help families, clinicians and services match in differing gender phenotypes. and address individual needs, improving health
9. Develop a National Quality Framework for outcomes and reducing preventable deaths.
Best Practice in Early Intervention for autism / 18. Integrate evidence-based transition planning neurodevelopmental conditions, maintained for resources for autistic school-leavers for use in currency of the most recent evidence. high school-based transition planning and the
10. Commit funding to quality research addressing Australian Curriculum: Work Studies Years 9-10; gaps in the evidence for early intervention as well as the NDIS School Leaver Employment approaches, and mechanisms for guiding Supports program.
delivery of effective intervention given an 19. Develop work experience programs for autistic individual’s functional need and circumstance. school students, with government supporting
their implementation through capacity building incentives.
4
-
Ensure that any national autism strategy or policy 26. Integrate employer-focused programs and framework is founded on the following principles: resources for neurodiverse workplaces within
human resource management training and i. individual and family-centred – goals, strengths,
challenges, needs and circumstance; professional development programs.
ii. whole-of-life and whole-of-spectrum; 27. Ensure full consideration of the physical and
digital environments, as enablers of social and iii. co-produced – developed, implemented and
economic participation, within a national strategy reviewed with all stakeholders, with autistic individuals and families/carers at the centre of that or policy framework and associated research. process; 28. Continue to invest in capacity building in
iv. evidence-based – guiding practice and policy; community-led advocacy and services through
and Information, Linkages and Capacity Building
grants and other development programs v. innovation – commitment to high quality research
and continuous improvement. enabling autistic adults to fully contribute as
peers to policy, practice and research that impact21. Commit to further funding of national, upon their lives. collaborative research, at scale – at least
maintaining existing levels of investment over Autism CRC has commenced work towards a legacy multiple years. operation beyond the term of current CRC Program funding. It is engaging with government across the
-
Ensure that national priorities for research – as range of portfolios regarding a coordinated program may be reflected in a national autism strategy of activities addressing a number of areas relating – address issues across the whole-of-life and to the Senate Select Committee Terms of Reference whole-of-spectrum, and are determined through and the above recommendations – including best a stakeholder representative body, akin to the practice in assessment and diagnosis and targeted Australian Autism Research Council. early intervention; improved health and health
-
Enhance the evidence-base and understanding services; and greater economic participation through of supports for work readiness and employment employment. to: Autism CRC welcomes the national, whole-of
i. build capacity of the employment services sector government view adopted by the Senate Select
and employers to provide quality support to Committee. Such a comprehensive and integrated autistic job-seekers and employees; and approach to policy and practice, and to the research
ii. support job-seeker informed choice and control, evidence supporting these, is necessary if outcomes
consistent with the NDIS Participant Employment for autistic Australians, their families and carers, and Strategy and the 2018 Disability Employment society are to be maximised. Services reforms.
-
Support the further development and evaluation of neurodiversity employment programs for application beyond Information Technology roles.
-
Codify and promote the evidence-based benefits of, and practices for, neurodiversity in the workplace through major employer groups, such as the Business Council of Australia and the Australian Public Service.
5
Term of Reference (A): Current approaches and barriers to consistent, timely and best practice autism diagnosis The diagnosis of Autism Spectrum Disorder For example, the report found:
(ASD) can present a range of clinical challenges. • Most clinicians conduct at least two assessmentThe accurate diagnosis of ASD is not always sessions before making an ASD diagnosis. Thestraightforward because: length of assessment sessions is significantly
• there is no established biological marker longer in the public sector compared to the
for ASD in all individuals, meaning ‘gold private sector.
standard’ diagnosis is a best estimate clinical • There are more multidisciplinary assessment judgement1,2,3,4; teams in the public sector than in the private
• there can be extensive variability in signs and/or sector. While multidisciplinary teams usually
symptoms between individuals, and considerable conduct assessments together, sole practitioners overlap with other developmental conditions; may not necessarily collaborate with other and professionals to make diagnostic decisions.
• assessing whether an individual meets • A small number of health professionals reported
‘behavioural criteria’ for ASD, as outlined having diagnosed autism when an individual in the Diagnostic and Statistical Manual of does not meet criteria for the disorder, usually to Mental Disorders (DSM), or the International ensure that the individual can access intervention Classification of Diseases (ICD), is a subjective or support services.
task, and its accuracy relies on clinician • Few clinicians provided diagnostic assessments experience and skill. for autism in regional, rural and remote areas of
The challenge of providing accurate diagnoses, and Australia. The wait for a diagnostic assessment a consistent standard of care across Australia, is in these regions was significantly longer than the further complicated by geographical variations in: wait list period for families in major cities.
• the composition of the clinical diagnostic team – The existence of many processes causes much
while some states have historically required the confusion, time and resource wastage, frustration consensus of an experienced multidisciplinary and entrenchment of disability.
assessment team, other states have had less “Adopting a minimum national standard for stringent criteria; ASD diagnosis across Australia would improve
• the quality and quantity of assessments diagnostic practices and consistency across
administered; the country, and ensure that future diagnostic assessments are in keeping with best practice• the ability to attract and maintain a suitably Guidelines3.’’ trained workforce in urban, regional or remote contexts; and A new national standard
• the diagnostic interactions between the health, In response to these issues, Autism CRC developed
education and disability public services offered Australia’s first National Guideline for the Assessment by each state/territory and federally. and Diagnosis of Autism Spectrum Disorders in A review of ASD diagnostic practices in Australia5 Australia4. The Guideline was developed in close concluded that this geographical variability is likely consultation with key clinical professional Societies to have contributed to uneven service provision and Colleges, autism service providers, and the and confusion among clients undergoing diagnostic community; with funding support from the National assessment. Disability Insurance Agency (NDIA). A 2016 Autism CRC report3 further confirmed that All 70 Guideline recommendations were there is a lack of consistency in diagnostic practices subsequently endorsed by the full Council of the across Australia and that some professionals may National Health and Medical Research Council not be practising in a way that is consistent with (NHMRC), following extensive international review of international best practice guidelines. both methodology and content. The Guideline was launched on 18 October 2018 by the Commonwealth Minister for Health and the Commonwealth Minister for Families and Social Services.
6
Term of Reference (A) continued
The Guideline defines clinical best practice for the are based across Australia, and urban, regional and assessment and diagnosis of ASD, and sets a new remote settings (see Figure 1 on the following page). national standard. It aims to provide greater: While initial research indicates adoption of the
• Equity – in access to and delivery of a rigorous National Guideline at the grass roots level by many
and comprehensive ASD assessment; providers across Australia, substantial benefits from
the new national approach will only be realised• Transparency – in the diagnostic and decision- through consistent, national implementation in making process; and practice, across the health, disability and education
• Confidence – in the accuracy and reliability of sectors.
diagnostic decisions. Autism CRC is working with the Commonwealth In terms of content, the Guideline provides Government, led by the Department of Social detailed recommendations within a process for Services (DSS), to support greater implementation of the assessment and diagnosis of ASD, from the the Guideline recommendations by diagnosticians time of referral, including recommendations on the across Australia. This work includes developing content of information gathered and generated, online resources to support clinicians, service professionals involved in the process, and settings. providers and the community to understand the assessment process and guidance for clinicians andCritically, the pathway defined by the Guideline organisations on implementation of the Nationalincludes a comprehensive health and functional Guideline’s recommendations. These resources willassessment in understanding the individual – their be made available and widely promoted in the laststrengths, challenges, potential and support needs quarter of 2020.– as the first step on the diagnostic pathway. The Guideline also highlights other factors that need to Autism CRC is also supporting DSS in engaging be considered in order that that understanding is representatives of clinical professions’ colleges and wholistic and accurate, being: societies, service providers and the community, together with representatives of other Government• age; departments and agencies, to guide national
• intellectual and/or communication capacity; implementation – in keeping with the approach of
• gender; involving key stakeholders that saw the development
of the National Guideline. It is anticipated that• Aboriginal and Torres Strait Islander, and peak bodies will develop resources and guidance Culturally and Linguistically Diverse (CALD) for their members in line with the Guideline backgrounds; recommendations.
-
regional or remote location; Since 2013, significant progress has been made to
• complex psychosocial factors; and increase the consistency and quality of diagnostic
• differential diagnosis and co-occurring practices across Australia, but there is much more
conditions4. work to be done to support the implementation
of the National Guideline’s recommendations,This comprehensive understanding of the individual, address systemic factors, nationally, and ensurereviewed and updated over time, should then inform all Australians seeking assessment and autisma pathway of services and support across health diagnoses can access the same optimal level ofservices; disability support (including through the service irrespective of geographic location or familyNDIS and the Early Childhood Early Intervention income.Pathway); education; and other community settings,
including in workplaces and the justice system – Integrated care pathway many of which relate to the Select Committee’s other The full benefits of consistent, quality assessmentTerms of Reference. and diagnosis of autism are only realised if Guideline implementation integrated in a care pathway, which includes:
More than 15,000 people have registered to access • A national system of surveillance, identifying
the National Guideline for the Assessment and and referring individuals for assessment and, Diagnosis of Autism since its release, including potentially, diagnosis at the earliest opportunity, approximately 8,000 professionals such as particularly in early childhood. Autism CRC has paediatricians, psychologists, speech pathologists successfully trialled early childhood surveillance and occupational therapists. These professionals tools developed at La Trobe University in two
7
Term of Reference (A) continued
States with maternal and child healthcare nursing • Consistent implementation across systems,
systems. It is presently conducting a multi-State particularly health, disability and education, trial of protocols for national early childhood avoiding the significant financial and emotional surveillance in General Practitioner clinics. cost of replicate requirements. This includes a review of the public funding mechanisms for• A national quality framework for targeted access neurodevelopmental assessments (through to the right evidence-based interventions and Medicare, the NDIS and other mechanisms), supports, based on individual goals, strengths whether this is adequate to meet the assessment and needs, provided at the right place and at the process described in the Guideline and, right time. Such a framework should also deliver again, seeking to reduce the number and cost evidence-based information to providers, funding to individuals and government of multiple agencies and families, allowing the latter to assessments across systems. exercise informed choice and control.
1 8080
1010 1
1 8686
5 2 2 7373 9 3030 5 1111 1 1 1
2 1313 4 1 1515 6666
3
205205 2 2 3 117117 1 10301030 1313
1 1010 2323
1 8383
2 9 1
7
715715 1 1 6 3232 5353 8787
1 2
5252 4 1919 1313 7272 14891489
1 5 1818 4
1919 1313 438438 2 8686 5959 180180
3636 5353 1212 1818 340340
1717 2323 2727 12661266 4949
8282
121121
Figure 1. National Guideline registrations by professionals across Australia.
8
Term of Reference (A) continued
Recommendation(s):
-
Fully implement the National Guideline for Assessment and Diagnosis of Autism in Australia, across states and territories and service systems (particularly health, disability and education).
-
Implement the National Guideline for Assessment and Diagnosis of Autism in collaboration with representatives clinical professions, service providers and community groups – consistent with the way the Guideline was developed.
-
Develop a person-centred clinical care pathway centred on the National Guideline for Assessment and Diagnosis of Autism, integrating neurodevelopmental surveillance and a national quality framework for early intervention.
-
Revise the Medicare Benefits Schedule to align with the assessment and diagnosis process in the National Guideline for Assessment and Diagnosis of Autism, including for adolescents and adults.
-
Rationalise assessment requirements and funding mechanisms across service systems to avoid duplication.
9
Term of Reference (B): The prevalence of autism in Australia Autism is among the most complex, prevalent and over time. Such an understanding is necessary for heritable of all neurodevelopmental conditions. effective planning for both the provision of services Prevalence rates around the world are increasing; for and policy development.
example, with a recent report from the US Centers As part of the process of implementation for thefor Disease Control showing an estimated 1 in 54 National Guideline, there is an opportunity to8-year-old children were identified with ASD in establish a national autism data register. Not only20166. does this provide a direct opportunity to assess
The number of Australians self-reported as having a prevalence, but aligned with the data needs outlined diagnosis of autism in the ABS Survey of Disability, in the Guideline, rich clinical data arising from the Ageing and Carers (SDAC) has increased by 25.1% comprehensive assessment process (e.g. functional from 2015 to 2018, to 1.3% of males and 0.4% of ability, IQ, health data, diagnosis) may be gathered. females7. These latest ABS figures put the prevalence This would be of significant value to policy-makers, rate of autism diagnoses for children aged 5-14 years service providers and researchers globally, while in Australia as approximately 3.2%, up from 2.8% in providing important information for individuals and the 2015 data. an integrated and person-centred clinical care pathway across service sectors.Similarly, there have been a number of Australian research projects that have indicated a significant Such a register should also be established with increase in prevalence over the past decade, linkages to other related national datasets, such including studies using data from the Longitudinal as those administered by the Australian Institute of Study of Australian Children8 and the Helping Health and Welfare, the health system and the NDIS, Children with Autism5 funding package. and operate under the national data management framework of the National Data Commissioner.However, we do not have a good understanding of the prevalence of autism in Australia and trends
Recommendation:
- Establish a national autism data register, with appropriate data linkages, to facilitate improved services, policy development and research, as well as individualised healthcare, interventions and supports.
10
Term of Reference (C): Misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services
The National Guideline for Assessment and Early assessment and diagnosis is important for the Diagnosis of Autism4 states that autism is diagnosed management of co-occurring health conditions. By more commonly in males than females (often way of example, there is a growing body of literature reported 4:1). The 2018 SDAC figures indicate indicating a link between anorexia nervosa (AN) and prevalence for males is 3.5 times that for females7. autism, studies showing one in four adolescent and That said, there is growing evidence this may not adult females with AN meeting the clinical criteria for reflect the true gender ratio of autism, but a bias ASD12. towards the identification of males in the diagnostic process. This may in part be because females are Community feedback better able to ‘camouflage’ or ‘mask’ behaviours and In 2019, the Australian Autism Research Council manage difficulties, together with the current design (AARC) (which operates under the auspices of instruments used to assess behaviours reflecting a of Autism CRC) undertook a major community presentation more common in males than females. consultation process on national priorities for autism research. The consultation process, whichEvidence from scholarly literature indicates: allowed the community to respond to seven draft
• Females on the autism spectrum are commonly priorities developed by the AARC, received online
quite adept at camouflaging, which can make survey responses and submissions from over 1,100 detection more difficult, and often causes individuals and organisations. As part of the survey, individuals to doubt themselves9. respondents were able to suggest other research priority areas. More than 600 respondents chose• There needs to be greater recognition of to suggest one or more additional priorities, and the female autism phenotype, including the many of these indicated concern about the efficacy increased tendency to internalise mental health of existing autism diagnostic tools, particularly for issues9. women and girls13.
-
Mothers of girls on the autism spectrum found that red-flags were often dismissed by health- Some respondents mentioned that there needs to be more research to prevent late autism diagnoses professionals, leading to later diagnosis10. among women and girls, as well as a need for
• Mothers with daughters on the autism spectrum, more support for those who have received a late
often felt a sense of incompetency, encouraged diagnosis. by the lack of information and resources available about females on the spectrum10. In addition to the draft research priorities identified
by the AARC, respondents were provided with a list• Importantly, gender does not significantly predict of potential research priority areas based on the UN
the age of diagnosis11. Convention of the Rights of People with Disabilities.
• Parents, of girls diagnosed with autism, describe “Women and Girls” was the most commonly selected
the diagnosis as being a catalyst for positive additional priority area by autistic respondents (79%).
change. The increased understanding of their “World leading experts … have come to child’s needs led to decreased stress and understand that girls and women present positive outcomes for family harmony10. differently than males and are generally
There is also growing evidence that being much better at trying to fit in, masking and transgender or gender diverse is more common trying to pass as ‘normal’, because they are in individuals on the autism spectrum than for the so misunderstood (to the detriment of their broader population. The National Guideline suggests mental and physical health and well being) and, that assessment teams have a good understanding it seems that many in the medical profession, of gender diversity and its potential impact on in education, in the government, etc. have not behavioural presentation and needs. caught up with the latest understanding of this. Education and understanding of the latestGiven the importance of early diagnosis and intervention, an understanding of how autism research on autistic girls and women needs to manifests differently between genders is critical. much more widespread and accessible to those who affect the lives of autistic girls and women
11
Term of Reference (C) continued
and their families and carers … It is a huge There has been significant research in recent years problem that I can see at the moment – from on the autistic female phenotype. It is essential first-hand experience, as well as observations.” that such evidence is incorporated in assessment
and diagnostic instruments and professional AARC Community Consultation Respondent. understanding.
Recommendation(s):
-
Implement the National Guideline for Assessment and Diagnosis of Autism – noting the important consideration of factors of gender and gender diversity (Guideline Recommendations 61 and 62).
-
Enhance existing tools, or develop new ones, for use in the identification, assessment and diagnosis of autism to account for presentation in differing gender phenotypes.
12
Term of Reference (D): International best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity Diagnosis supporting autism early intervention approaches for
children up to the age of 12 years (‘Early InterventionThe National Guideline for Assessment and Review’). This Autism CRC study will seek to answerDiagnosis of Autism was developed on the back the following questions:of a series of systematic reviews of the literature
and extensive consultations with professional • What interventions have been examined in
and community groups4. Subsequently, following systematic reviews?
independent international methodological • What effects do these interventions have on childand content reviews, all 70 of the Guideline’s outcomes?recommendations were endorsed without
amendment by the full Council of the NHMRC • What effects do these interventions have on
in 2018. It describes optimal clinical care for the parent/caregiver outcomes?
assessment and diagnosis of autism. • What are the optimal delivery characteristics of
these interventions?Effectiveness and required
-
What child characteristics impact on intervention intensity of interventions outcomes?
Interventions for individuals on the autism spectrum This study is due to be completed in Septembershare a universal goal of minimising the impact 2020. Given the importance of early intervention,of developmental challenges on the individual’s with its impact upon neurodevelopmental pathways,abilities and quality of life and maximising their long- it is critical that the efficacy; optimal characteristicsterm autonomy over their own life choices. of the individual child and the mode of delivery; and
‘Early intervention’ is a term used to describe safety of intervention approaches are supported therapeutic (and non-pharmacological) interventions by the highest level of clinical evidence. We do not designed to improve developmental outcomes accept less for pharmacological therapeutics or that is first applied during the early years of other therapies used in clinical practice for other life. Early intervention is considered important, conditions – and should not in the case of autism.
providing significant opportunities to support early We know that there will be variability in the degreedevelopment and reduce longer-term disability. of evidence supporting each of these elements
A wide range of early intervention approaches for across the range of early interventions. Further, autism are offered by providers. These are often research has shown that there is use of intervention divided into the following categories14: approaches for autism in Australia for which
efficacy is not well supported by evidence16. Early1. Behavioural intervention recommendations are made that are
2. Developmental not well-matched to the goals and functional needs
of a child, with both families and professionals being3. Naturalistic developmental behavioural poorly informed as to evidence-based best practice. interventions This results in lost opportunity, suboptimal outcomes
4. Sensory-based interventions and significant additional costs to families and the
5. Technology-based interventions. health and disability systems.
As individuals on the autism spectrum vary widely in It is essential that current information on the best developmental abilities and needs, it is recognised practice in early interventions, and the evidence that there is no ‘one size fits all’ approach to autism base supporting these, be available to the intervention; that is, there is no one therapy model community, service providers and researchers, or mode of delivery that improves outcomes for all as well as to government and related agencies, children15. such as the NDIA. A national quality framework for
early intervention in autism / neurodevelopmentalAutism CRC is currently undertaking a study, conditions – a living framework that is maintainedcommissioned by the National Disability Insurance for currency of evidence – should be developed as aAgency, to review the international evidence matter of priority.
13
Term of Reference (D) continued
There is a need and opportunity to develop standards that would ease communication and this framework upon existing National Quality program delivery across sectors.
Frameworks, including the NDIS Quality and Finally, it is critical that there is major researchSafeguards Commission – Behaviour Support investment in addressing gaps in the evidence-baseCompetency Framework 2018 and the Early Years for early intervention. Evidence is required to guideLearning Framework and Quality Standards, which critical decisions, e.g. intervention type for givenguide practice and policy within early childhood age and need, and intensity and duration of delivery.health care services and educational and care As a result of prior investments in research andservices. infrastructure, Australia is well placed to advance
A National Quality Framework would better inform evidence-based practice in this regard. The study and equip service providers and families (so they currently being completed by the Autism CRC might make more informed choices), as well as (commissioned by the National Disability Insurance Government, on evidence-based practice in early Agency) will provide an excellent understanding of intervention. This will also ensure that childcare, gaps in early intervention evidence, and could be education, health, and other child services used as one mechanism through which research professionals have a unifying set of language and priorities in this area are devised.
Recommendation(s):
-
Develop a National Quality Framework for Best Practice in Early Intervention for autism / neurodevelopmental conditions, maintained for currency of the most recent evidence.
-
Commit funding to quality research addressing gaps in the evidence for early intervention approaches, and mechanisms for guiding delivery of effective intervention given an individual’s functional need and circumstance.
Education presence of students on the spectrum in mainstream education have not been accompanied by adequateThe Convention on Rights of People with a Disability educational supports in response to their needs18.(CRPD) Article 24, Comment 4 highlights rights of all children to attend their local school with their siblings In the last five years, there has been extensive and in their community17. investigation into the educational experiences
of Australian students with disability, includingThe 2018 Australian Survey of Disability, Ageing and those with developmental disabilities. There hasCarers (SDAC) documented that intellectual disability been a review of Australia’s Disability Standardswas the most common (4.5%) disability affecting for Education, major evaluations in four Australianchildren7. The same survey reported that the number states and territories (Queensland, New Southof Australians on the spectrum increased by 25.1% Wales, Victoria, and Northern Territory), and afrom 2015 to 2018, with autism prevalence for national Senate inquiry. In April 2019, a RoyalAustralian children aged 5-14 rising to approximately Commission into Violence, Abuse, Neglect and3.2%7. Exploitation of People with Disability was announced
In regards to educational provisions, the available by the Australian government, with schools falling data present an interesting picture, with nearly 31.2% into its Terms of Reference. The commissioned of the students with disabilities in general being reviews and reports have documented concerning placed in special classes in mainstream schools or inconsistencies in the access and implementation of special schools; while the figure is 40.8% for students inclusive practices throughout Australia. These may on the autism spectrum7. explain:
The 2018 data also revealed that 77.7% of 1. the growing number of students with disabilities
autistic individuals attending school or another in segregated settings18,19; and
educational institution reported social, learning and 2. the dissatisfaction of students with disabilitiescommunication difficulties at their place of learning7. and their families with their school experiences20.These findings reflect that greater identification and
14
Term of Reference (D) continued
The number of children being home-schooled • a better understanding of the developmental and
is increasing. In NSW, for example, the number behavioural trajectories of Australian students on registered for home-schooling has increased by 65% the autism spectrum; and
between 2014 and 201821. In 2018, 25% of home- • the skills and confidence of teachers and supportschooled students listed “special learning needs” personnel.as the reason for home-schooling, an increase from
20% in 201621. With support through the Positive Partnerships program, this research was extended to support the International evidence indicates that inclusive effective delivery of outputs in remote, Aboriginal education is good for students with and without and Torres Strait Islander and CALD communities. disability22. However, many Australian families with a child with disability are not provided with inclusive On 18 May this year, the Commonwealth Minister mainstream education when considering schooling for Education launched inclusionED, an online needs and options for their children. professional learning community, co-designed with educators, for educators (www.inclusioned. International best practice suggests that a Multi- edu.au). inclusionED provides evidence-based and tiered System of Support (MTSS)23 that embeds research-informed teaching practices and resources Universal Design for Learning principles (UDL)24 can for educators to employ in supporting students be an effective framework for providing support with diverse learning needs and styles in inclusive for the needs of all students in inclusive schools, mainstream schools – founded in the principles of including those on the autism spectrum25,26. Universal Design for Learning. UDL is a set of principles to support teaching The inclusionED platform represents the translation for diversity in a classroom where teachers are to practice of the research outputs from the School encouraged to teach and assess student’s learning Years program of work in schools across Australia in flexible ways. This is an ideal approach for over 6 years, those outputs now embedded within providing a foundation of support in inclusive practices and resources for use in the classroom. education. UDL requires teachers to provide Presently, there are 27 practices available through multiple methods of engagement, representation, the platform, with more to be added as current and action and expression27, helping to increase projects complete. interest and understanding. For students on the spectrum, this may involve building on their special inclusionED also provides a national community interests. The framework of UDL can incorporate a of practice (currently more than 1,100 members), range of evidence-based teaching strategies that enabling social sharing and educator reviews support educators to accommodate individuals with on the experience of implementing specific a wide range of abilities and backgrounds28. These practices. Detailed information supporting practice principles have underpinned Autism CRC’s work in implementation aligned with the Australian Institute Program 2, “the School Years”. for Teaching and School Leadership’s High-Quality Professional Learning Cycle is provided – supporting Autism CRC’s School Years program built on educator professional development. foundational research undertaken in Australia’s first nationwide needs analysis of the educational The inclusionED platform has only been made needs of autistic students (aged 5-16 years). This possible by investment in education research at a study gathered inputs from almost 1,500 school national scale and over a period of years allowing administrators, teachers and specialist support staff, needs analysis, design, development, trial and ancillary support staff such as teacher aides, parents translation – together with the collaborative efforts and students. of thousands of individuals across the research community, school systems and schools, educators, Over the past six years, the School Years program parents and students. Both have been enabled by has seen over 25 research projects conducted on- the nature of the investment in the CRC program. ground in over 300 state, catholic and independent schools across Australia, aimed at developing: In providing tools and skills development for educators to better support the diverse learning
• tools and practices to enhance teaching and the needs and styles of students, inclusionED is one
learning experience (classrooms of excellence); of the most significant steps to develop inclusive
• evidence-based tools and programs for classrooms and practices in Australian schools. As
supporting social, emotional and behavioural Article 24 of the CPRD states, inclusive education needs of children and adolescents; involves a process of systemic reform, where
15
Term of Reference (D) continued
changes and modifications are made to content, teaching methodology, approaches, structures and strategies in order to remove barriers that prevent all students from accessing an equitable, participatory learning experience17. Hence, in addition to furthering the inclusive educational practices for educators through inclusionED, there is much to do taking a systemic view of education across Australia if students and families are to be provided with inclusive mainstream education when considering schooling needs and options.
Recommendation(s):
- Integrate within the framework of national education reforms of needs-based funding models, aligned individualised learning and Nationally Consistent Collection of Data (NCCD):
i. information on comprehensive assessment of individuals consistent with the National Guideline for Assessment and Diagnosis of Autism; and ii. inclusive education principles and practices for students provided with a multi-tiered system of support and universal design for learning in mainstream early childhood, primary and secondary education settings.
-
Incorporate inclusive education principles and practice as fundamental elements within existing professional development and systematic accountability frameworks for school leaders.
-
Commit resources to ongoing development and review of evidence for maintenance of a Quality Framework for Best Practice in Inclusive Education.
16
Term of Reference (F): The interaction between services provided by the Commonwealth, state and local governments, including:
(i) health and mental health, (ii) education, (iii) employment, (iv) justice, and (v) housing
General Consistent with Autism CRC’s focus on end-user
driven research, we have engaged health and alliedThe clinical pathway for autism typically starts during health professionals (including colleges, societieschildhood and has typically seen a fragmented and associations), educators and disability servicesystem of support through the health, disability, providers directly in our research and researcheducation and social services systems, at state translation activities – aiming at tools and otherand Commonwealth levels. This can mean that resources suited to practical application. Similarly,unnecessary or inadequate supports are provided, dissemination of these resources for use hashealth concerns overlooked, and the doubling-up primarily been by direct means to practitioners.of requirements as people move from system to
system, significantly increasing the financial and Dissemination and use of evidence-based outputs emotional cost of support. from research in this way does effect change.
However, if the maximum benefit is to be realisedFrom commencing operations in 2013, Autism from major initiatives, such as consistent nationalCRC’s program of work has targeted research adoption of the National Guideline or inclusivegoals with significant national application and education practices, systemic implementationimpact. As such, work has been conducted across across Commonwealth, state and local governmentstate and territory boundaries, with and through service sectors is required. It is recommended thatthe more than 50 participant organisations across such implementations are coordinated at a nationalAustralia. In that work, we have observed the level by bodies such as the Council of Australiandifferences between systems, states, and particularly Government’s Disability Reform Council.between the Commonwealth and the states, who
have responsibility for services delivery in most Specifically, in relation to the National Guideline, the of the sectors mentioned in the terms above. As comprehensive health and functional assessment an example, a review3 of diagnostic practices in undertaken should not only inform the diagnosis, but Australia highlighted the geographic variability also a supports pathway that is person-centred and across (and within) states, and formed part of the covers all relevant service sectors. In implementing needs analysis that led to the development of the Guideline, and the data management systems the National Guideline. The picture is made more associated with it, there is an opportunity for these complex in this case by the variability in application comprehensive data to inform:
of diagnostic practices between service sectors, e.g. • health services, consistent with personalisedhealth, disability and education. healthcare principles;
Similarly, differences and disconnects have been • disability support, including through the NDISevident between the states in relation to education with participant-centred practice and needs-and health services. In saying this, we have enjoyed based supports;significant support from the Queensland Department
of Education and the Tasmanian Department of • education, supporting individualised learning
Health, both participants in the CRC, in contributing plans and needs-based school funding; and to our national program.
Recommendation(s):
-
Ensure ajor national practice and policy initiatives affecting state and local government service sectors be coordinated at a national level through bodies such as the Council of Australian Government’s Disability Reform Council.
-
Create national Guideline for Assessment and Diagnosis of Autism data linkages with other service systems (e.g. health, education and disability) with a view to the quality, consistency and efficiency benefits of access to permissioned data for person-centred planning and supports within these sectors.
17
Term of Reference (F) continued
• accommodations and supports in community co-occurring conditions, and therefore clinical
settings, including workplaces and the justice intervention strategies, if the enormous gap in health system. outcomes is to be addressed.
Health and Health Services Autism CRC’s Adulthood program has worked with health professionals to develop a number of tools
Over 90% of individuals on the autism spectrum to upskill the clinical workforce on autism and its report having one or more co-occurring conditions13, presentation. These include: with autistic individuals having significantly
worse physical and mental health outcomes • the Comprehensive Health Assessment Protocol
than experienced in the general population. A for Autism (CHAP-A), a self-health assessment longitudinal study of young Australian school tool for autistic adults to share with GPs, building leavers (aged 15 -25 years) showed significantly upon the very successful CHAP tool developed higher rates of anxiety, depression and Attention at the University of Queensland and used around deficit hyperactivity disorder (ADHD) among autistic the world for individuals with an intellectual participants than for the non-autistic participants29. disability;
A recent study of a large Australian health dataset • development of an autism pathway with
showed that autistic individuals have a mortality rate information and linkages, embedded in the more than twice that of the general population30. national portal HealthPathway system used by Unlike the general population where the principle health professionals, including GPs; and
cause of death was cancer, the main cause of death • resources and professional development
for autistic individuals was ‘injury and poisoning’, modules made available to GPs across which includes suicide, self-harm and accidents. For Australia (with almost 4,000 logged PD module people on the autism spectrum with an intellectual completions to date). disability, the leading cause of death was ‘nervous system and sense organ disorders’, which includes Again, dissemination and use has been via direct epilepsy. Suicide rates for the autistic community are engagement with clinicians. seven times those for the general population31. Implementation will require a systemic approach There is an urgent need to better understand the through national and state health service sectors. differing risk factors, causes and presentation of
58% 53% 29%
21%
Autistic
Depression Sleep issues Anxiety ADHD
Non-autistic 2% 17% 25%
54%
Figure 2. Rates of anxiety, depression and ADHD among young school leavers (aged 15-25 years)
Recommendation(s):
-
Upskill national clinical workforce in autism and the presentation and clinical management of co-occurring conditions as a matter of urgency.
-
Develop and disseminate best-practice tools and resources, including risk assessment tools, to help families, clinicians and services match and address individual needs, improving health outcomes and reducing preventable deaths.
18
Term of Reference (G): The social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people
Life stage transitions can be times of significant wellbeing, but individuals on the autism spectrum challenge. For example, transition to school is face major barriers to gain entry into the labour generally regarded as a challenging time for market. Having a clear and coordinated transition many on the autism spectrum, families and planning approach makes it more likely that an significant others (e.g. teachers) – with transitions adolescent on the spectrum will enter the workforce bringing changes to the physical environment, or undertake further education/training after leaving personal relationships, expectations, routines and school37.
processes32. The following focuses on one of the Providing young autistic people with early supportmajor transition challenges for individuals – that using a tailored career planning program can setfrom school to further education, training and them up for future success with employment. Theemployment. research literature indicates that starting career
planning and goal setting early, preferably in YearTransition from school to 9 of high school, ensures adequate time and further education, training and opportunities to identify career interests, develop life skills including independent community mobility, andemployment participate in work experiences37,38. The most recent ABS data (2018) put unemployment rates for autistic individuals at 34.1%, more than One of the key themes of Autism CRC’s Adulthood three times the rate for people with disability (10.3%) program has been the development of programs and and almost eight times the rate of people without tools to support transition from high school to further disability (4.6%)7. Further, only 44% of autistic education, training and employment. This program adolescents are likely to attend post-secondary saw the development of the Better OutcOmes and education and training, significantly less than their Successful Transitions for Autism (BOOST-A) and its peers with other disabilities7. subsequent evaluation in a nationwide randomised control trial, involving adolescents and their parents, The economic cost of unemployment of autistic and by education and health professionals who individuals is substantial. In 2011, a Synergies support them. Students reported higher levels of Economic Consulting report the cost of lost self-determination to achieve their goals for further productivity at $1.87 billion to $3.22 billion, excluding study or training and employment goals, than transfer costs of social services and reduced students who used the existing generic school taxation revenue33,34. based transition planning processes39. There are approximately 44,000 young Australians Autism CRC has since incorporated BOOST-A in on the autism spectrum aged 14-25 years, and a new smart web platform, myWAY Employability, two-thirds (i.e. 29,000) are unemployed or designed specifically to help young people on underemployed7. Young autistic people face unique the autism spectrum plan and prepare for their challenges that affect their employability, such as working life. myWAY Employability guides young difficulties with social communication required people though a series of questions to help them for the workplace; sensory seeking or avoidance identify their strengths, interests, and learning and behaviours; and the need for structure, routine, or environmental preferences; undertakes matching predictability in work tasks and instructions35. Other to relevant potential careers and employment challenges include anxiety about life after school, pathways; and provides scaffolded goal-setting to difficulties imagining their life after high school, track progress towards employment. It also contains and limited opportunities to engage in real-life a variety of information articles co-produced with experiences that help them develop important skills the autistic community, covering topics such as and successfully transition to work and independent Preparing for Work Experience, Getting Around, living36. Creating a Job Application, Pathways to University, Successfully transitioning from school to work and/or TAFE, or College, and Disclosure in the Workplace. further study can significantly improve an individual’s myWAY Employability is scheduled for launch in long-term economic future, social inclusion and August 2020.
19
Term of Reference (G) continued
An educator’s guide to using myWAY Employability implementation supported by government, may not is currently being co-designed and developed with only encourage these organisations to offer work professionals and educators to use in transition experience opportunities, but may also encourage planning support services and schools. These are other employers to do so and consider adopting planned to be available (via the inclusionED practice neurodiverse employment policies more generally. platform) in early 2021. Finally, poor school completion rates, as well as Work experience during school years is an enabler of lower levels of further education and training post-school employment, developing employability, attainment, are barriers to successful transition to increasing awareness of career options and employment. ABS data show that the proportion employment, and increasing self-understanding and of autistic individuals whose highest level of confidence. As will be discussed further in response educational attainment is Year 10 or below is 32.4%, to Term of Reference K, there are an increasing more than double that of those without disability number of Australian companies that are engaging (15.4%). Similarly, the proportion of students autistic employees and implementing neurodiversity proceeding to complete post-school certificate III/IV, employment programs – including Commonwealth diploma, advanced diploma or degree qualifications and state government agencies. The relatively low is 26% for autistic individuals compared with 59.3% level of workforce readiness of potential employees for non-autistic individuals.
has been highlighted by employers as a barrier or These data only highlight the need for more inclusiveadditional cost to recruitment. educational environments in mainstream schools,
Such organisations provide appropriate better supporting the social and academic success environments for work experience or internships for of diverse students – one of the primary objectives autistic students, aiding transition to employment of Autism CRC’s School Years program – and the post-school. The development of work experience need therefore to effect national implementation of programs for autistic school students, their inclusive education practices and transition supports.
Recommendation(s):
-
Integrate evidence-based transition planning resources for autistic school-leavers (such as myWAY Employability) for use in high school-based transition planning and the Australian Curriculum: Work Studies Years 9-10; as well as the NDIS School Leaver Employment Supports program.
-
Develop work experience programs for autistic school students, with government supporting their implementation through capacity building incentives.
20
Term of Reference (H): The adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including: (ii) the utility of the Early Childhood Early Intervention (ECEI) Pathway for autistic children
The core principle underpinning the ECEI Pathway in • A system of universal early surveillance
respect of autism is well-founded in evidence. implemented through primary healthcare
providers across the nation will supportProvision of swift, appropriate early intervention identification of children for referral forfollowing the earliest clinical indications of assessment at the earliest opportunity (within thedevelopmental delay, whether or not a diagnosis has first two years).yet been attained, promotes longer-term, positive
functional outcomes for individuals on the autism • Following assessment and referral for supports
spectrum40,41. in accordance with the National Guideline, a
National Quality Framework for Best Practice inDelayed receipt of intervention does not capitalise Early Intervention will provide the informationon the highly ‘plastic’ elements of neurodevelopment required by families, with the support of ECEIwithin the early years of life. There is now a wealth partner organisations, to make informed choicesof scientific evidence for a range of ‘behavioural for supports for their child and the family. Themarkers’ identifiable during the first two years of life Early Intervention Review currently beingthat indicate a significant likelihood that an infant
undertaken by the Autism CRC (commissionedmight subsequently be diagnosed as being on the by the National Disability Insurance Agency)autism spectrum. Providing intervention to these will be key to informing the development of thisyoung children once the ‘behavioural markers’ Framework.have been identified is highly likely to deliver better outcomes in reducing long-term disability compared Recent research undertaken with Autism CRC to waiting until diagnostic behaviours emerge in later indicates that commencing intervention at infancy years42,43. (less than 18 months of age) may be particularly
effective in reducing long-term disability, whereIt is generally recognised that the initial early autism interventions traditionally commenceimplementation of the ECEI arrangements has not at the point of diagnosis (typically older than twoadequately delivered the desired benefits of early years of age). The research tested a developmentalchildhood intervention, including family capacity intervention for infants (aged 12 months of age)building. The Tune Review of the NDIS legislation showing early behavioural markers for autism.found that more flexibility is needed in the pathway It found that, while the intervention did notto maximise the benefits of early intervention reduce autistic symptoms, the children receivingsupports for children with disability44. the intervention had better parent-reported
The implementation of the National Guideline is communication and social skills compared to a consistent with and will support the effective delivery control group when assessed 6 months later45.
of the ECEI Pathway, and should be integrated with This promising area of research only furtherthe ECEI gateway. The Guideline prescribes that a highlights the need for clinical pathways supportivecomprehensive health and functional assessment of the earliest identification and assessment of need,take place as the first step in the diagnostic and for investment in quality research that buildspathway, and that individuals should be referred for upon a Quality Framework for Best Practice in Earlyservices based on needs identified in that process. Intervention, matching that need to the appropriateImplemented consistently and nationally, the quality evidence-based intervention.of the process and information provided in referral
should lessen the overhead of resources and time in The above consideration of the ECEI Pathway and providing access to services through the Pathway. maximising its utility only reinforces:
Further, in the longer term, effective implementation • Recommendations 1 and 3 in response to Term
of the clinical care pathway described in response of Reference A relating to implementation of the to Term of Reference A – with appropriate resources National Guideline at the centre of clinical care and training for providers – will build the capacity of pathway; and the system to deliver the objectives of the NDIS ECEI Pathway and reduce systemic bottlenecks.
21
Term of Reference (H) continued
- Recommendations 9 and 10 in response to Term of Reference D relating to implementation of a
National Quality Framework for Best Practice in
Early Intervention and the need for quality early intervention evidence, and therefore research funding, to guide delivery of supports.
22
Term of Reference (I): The development of a National Autism Strategy and its interaction with the next phase of the National
Disability Strategy
The prevalence of autism continues to grow in adopted, so to avoid the significant costs of previous Australia and around the world. Autism represents fragmented approaches across states and territories, the largest cohort within the NDIS participant base, and across systems, such as health, disability and with 31% having a primary diagnosis of autism46. education. Over the past decade, there has been growing At the same time, it is important that any such recognition that an understanding of both the considerations, particularly in relation to assessment strengths and challenges of an individual and their of needs and the provision of supports, be centred family are important in determining the areas of on the individual and take place in the context of functioning, need and potential, and therefore for broader neurodevelopmental and behavioural service delivery. A strengths-focused approach conditions. An appropriately formed diagnosis of further highlights the significant socio-economic autism will be founded upon a comprehensive cost, both direct and opportunity cost, of autism assessment of an individual’s health, functioning, to individuals, families and the community, if not needs and potential. Further, a diagnosis is very adequately addressed. important to an understanding of self and by others.
However, the presence or absence of a diagnosis It is therefore appropriate that specific consideration alone should not be the determinant of needs and is given to autism within the context of broader supports4.Government policy settings and strategy. Further, it
is critical that an integrated national view of such be
Recommendation(s):
- Ensure any national autism strategy is founded on the following principles: i. individual and family-centred – goals, strengths, challenges, needs and circumstance; ii. whole-of-life and whole-of-spectrum; iii. co-produced – developed, implemented and reviewed with all stakeholders, with autistic individuals and families/carers at the centre of that process; iv. evidence-based – guiding practice and policy; and
v. innovation – commitment to high quality research and continuous improvement. 23
Term of Reference (J): The adequacy of funding for research into autism
There are three important elements to this question: almost $44 million and significant funding now
allocated to lifespan issues, infrastructure and1. What is the quantum of funding? surveillance (including, in the case of Autism
2. Where is it directed? CRC, resources for longitudinal study of matters affecting autistic adolescents and adults).3. How is impact realised?
-
Over the period 2013-2017, there was a Research funding significant increase in funding of $30 million The first Australian autism research papers were (210%). Autism CRC was the largest contributor published in the mid-1970s, and until the last five to to total funding awarded for the period with $20 ten years, research was heavily focused on early million, with the NHMRC at $19.3 million and the childhood and genetic studies. Despite autism ARC at $4 million.
being a lifelong condition, very little research was • Over the period 2013-2017, the NHMRC awardedundertaken on adolescent and adult life. more than $3 billion in research funding, with
An Autism CRC study conducted by Macquarie $19.3 million directed to autism-related research.
University47 analysed the extent and nature of Throughout this submission, we have identifiedautism-related research funding by: areas of significant need for evidence-based practice
• the Australian Research Council, National Health and policy. Given this, increasing prevalence and
and Medical Research Council in the period the lifelong nature of autism, the level of funding 2008 to 2012; and allocated to related research would appear to be
disproportionately low. With funding to Autism CRC• the Australian Research Council, National Health under the Commonwealth CRC program coming to and Medical Research Council and Autism CRC an end in FY21, this will be significantly lessened at in the period from 2013 to 2017 (with Autism CRC a time of increasing need, without a commitment of operating from July 2013). substantial ongoing research funding to the sector.
Of note from this study: It is noted that this analysis relates to the cash
• For 2008-2012, almost half of the total funding of funding of research only. It does not include the
$14 million was allocated to biological research, value of in-kind invested in research by participant with no identifiable funding allocated to lifespan organisations, many in the end-user community, as issues, infrastructure or surveillance. is a feature of the Commonwealth CRC Program. Over the same period 2013-2017, in-kind participant• In the following five years, 2013-2017, there was contributions to Autism CRC funded research a clear shift in both the quantum and distribution projects totalled approximately $56 million. of autism research funding, with a total value of
Biology Biology
$6,581,015 $11,819,391 Treatments and Treatments and interventions $3,109,629 interventions $8,589,392 Screening and Screening and diagnosis diagnosis $1,849,748 $2,122,644
Services Services
$1,490,056 $3,434,494
Causes Causes
$919,432 $5,903,754 Lifespan issues $3,164,015 Infrastructure and
surveilance $8,902,296 2008-2012 2013-2017
Not specified $49,746
Figure 3. Distribution of Australian autism research funding in 2008-2012 (left) and 2013-2017 (right)
24
Term of Reference (J) continued
Research priorities Research impact Autism CRC’s current program of work, under the The experience of the Autism CRC highlights two Commonwealth CRC Program, was developed important elements that deliver positive impacts in in consultation with the end-user and research the lives of autistic individuals and their families. communities, to ensure that it was directed to
-
Collaborative research, co-designed andpriorities identified for research that would have impact on improved policy and practice. This co-produced by the research and user resulted in the three program themes described communities earlier, addressing the Early Years, the School Years Enabled by the Commonwealth CRC Program, and Adulthood. Autism CRC has been able to bring together previously disparate research, clinical, serviceIn 2018, Autism CRC established the Australian Autism Research Council (AARC) to review and provider and government organisations to determine national priorities for autism research and work collaboratively on research priorities of address areas of need for the autistic and broader national importance. There are currently 56 autism communities. The Council is made up of organisations engaged as participants in the representatives of the key stakeholder groups – CRC, located across Australia and overseas. autistic individuals, parents/carers, service providers, These organisations represent health and health/education professionals, government and education professionals; major service providers researchers – such that priorities are agreed by and across Australia and New Zealand; universities for the stakeholder community. and a medical research institute; school systems;
an international healthcare company and otherIn June 2019, the AARC conducted a large technology companies; Commonwealth andcommunity consultation with the aim of State Government departments and agencies;understanding community research priorities. and, critically, those on the spectrum and their
The resultant report13 identified 10 research priority families. areas identified for autism research in Australia, The collaboration of these organisations has listed alphabetically below. the capacity to design and conduct research
• Built environment activities, and translate the outputs to practice
and policy.• Choice in living and housing
It is also noted that Autism CRC has been at• Communication the forefront of driving participatory research
• Education practice in Australia, including through the
Research Co-Production program offered• Employment through the Sylvia Rodger Academy to develop
• Family and carer support the capacity of autistic adults and autism
• Gender, diversity and inclusion researchers to work as peers in research.
• Health and disability services delivery 2. Research at scale – in terms of objectives,
• Health and wellbeing impact, timeframes and resources
• Justice With the time and resources available through
the eight-year Commonwealth CRC program,The AARC is currently undertaking further Autism CRC has been able to strategically investinvestigation to identify specific areas of community in quality research projects, involving multipleneed associated with these research priorities, parties over multiple years, and bring theseand has an ongoing charter to review and update together to address significant national needs.research priorities as defined by community Without such time and resources, the Nationalstakeholders. Guideline for the Assessment and Diagnosis of
Autism and the inclusionED education practices platform could not have been delivered, founded as they were on prior years of research on needs analysis, development and evaluation.
25
Term of Reference (J) continued
Recommendation(s):
-
Commit to further funding national, collaborative research, at scale – at least maintaining existing levels of investment over multiple years.
-
Ensure that national priorities for research – as may be reflected in a national autism strategy – address issues across the whole-of-life and whole-of-spectrum, and are determined through a stakeholder representative body, akin to the Australian Autism Research Council.
26
Term of Reference (K): The social inclusion and participation of autistic people within the economy and community Employment through which resources from existing program providers and their experiences are shared withThe most recent ABS figures from 2018, show that other employers.autistic individuals have significantly lower rates of participation in the labour force (38.0%) than do Autism CRC has also developed tools to assist people with disabilities more broadly (53.4%) or employers develop an inclusive workplace and those without a disability (84.1%)7. The unemployment management practices that support the sustained rates for autistic individuals (34.1%) are almost eight employment of neurodiverse employees – including times that for those with no reported disability7. the Integrated Employment Success Tool, soon to be released following a successful trial with over 100It is also noted that the level of labour force Australian employers.participation for parents and other primary carers is also significantly lower than for non-carers. The While there has been an increasing number 2018 ABS Survey of Disability, Ageing and Carers put of companies and government organisations these rates at 58.8% for primary carers generally and implementing autism employment programs – such 81.5% for non-carers7. as ANZ Bank, SunPork Farms and the Department
of Defence – the number of organisations andAs previously mentioned, successful transition the number of individuals employed throughto further education, training and employment these programs are low. There remains limitedrequires a focus on raising the level of educational understanding amongst employers generally of theattainment, as well as planning and preparing for that benefits of neurodiversity in the workplace49 and thetransition from the middle years of secondary school. pathway to implementing appropriate programs.Young people on the autism spectrum are more
likely to struggle with successfully transitioning from There needs to be a significant scaling of school compared to their non-autistic peers – and understanding and practice in order to provide those who do not make a successful transition are greater opportunity for employment to the 62% of at a significantly greater risk of long-term exclusion the 94,600 autistic individuals of working age (at last from the labour force as well as social isolation and measure7) not participating in the labour force, and physical and mental health issues37. their families.
In recent years, there has been a growing • There needs to be greater connection between
recognition of the benefits of neurodiversity in supply and demand. Employer and employment the workforce amongst a number of prominent service provider information on work experience companies and government organisations. Through and employment opportunities should form the provision of employment practices and an input to transition planning programs for environments that enable use of autistic strengths, school-leavers post-education job seekers (per these benefits extend to better identifying and Recommendations 18 and 19).
leveraging the talents of all employees48. • The accessibility of and quality of information on
At the same time, companies implementing employment services for autistic job-seekers, and neurodiversity employment programs have their capacity to support sustainable employment encountered challenges in doing so, for example, both need to be enhanced.
in identifying and sourcing suitable candidates, and • The existing successful programs need tomanaging employee anxiety48 post-recruitment. be adapted, evaluated and applied to otherThese all require a change to workplace practices, industry sectors. Many of the successful autismwhich again, implemented systemically, might bring employment programs have had a focus onbenefits to all employees and the organisation. Information Technology related skills and roles.
Importantly, the more mature employment programs One exception is the Autism & Agriculture have developed their practices to support sustained program implemented by SunPork Farms with careers. support from Autism CRC and Specialisterne Australia, which sees 12 autistic employeesAutism CRC is working to increase awareness of engaged in on-farm operations at two SunPorkthese successful programs through the Autism@ sites – those individuals having been employedWork employer forum initiated with DXC Technology, now for over 2.5 years.
27
Term of Reference (K) continued
• The benefits of neurodiversity in employment of such programs. It is therefore important that
need to be viewed as an important and beneficial the business benefit of workforce neurodiversity component of workforce diversity like other is evidenced. dimensions of diversity, e.g. gender, culture. A North American study showed that, while nine out of ten companies claim to prioritise diversity, only 4% have specific programs that are disability inclusive50. This may indicate a ‘public good’ view
Recommendation(s):
-
Enhance the evidence-base and understanding of supports for work readiness and employment to: i. build capacity of the employment services sector and employers to provide quality support to autistic job-seekers and employees; and ii. support job-seeker informed choice and control, consistent with the NDIS Participant Employment Strategy and the 2018 Disability Employment Services reforms.
-
Support the further development and evaluation of neurodiversity employment programs for application beyond Information Technology roles.
-
Codify and promote the evidence-based benefits of, and practices for, neurodiversity in the workplace through major employer groups, such as the Business Council of Australia and the Australian Public Service.
-
Integrate employer-focused programs and resources for neurodiverse workplaces within human resource management training and professional development programs.
Accessible environments and The United Nations has emphasised the importance of affordable assistive technologies and removing technology barriers to access52, particularly for the 20% to Many autistic individuals have co-occurring 30% of autistic people who do not have spoken medical conditions, which also have physical or communication.
neurological accessibility requirements. Improving Accessible transportation is also a key enablerbuilt environments can have tangible outcomes for to greater participation in the economy andeveryone – unlocking options for independent living, communities. Autism CRC has already undertakeneducation, employment and health – with potentially research and trialled programs to facilitate greatereven greater impact for those with higher access access to public and private modes of transport.requirements. One study assessing factors that Work is needed to scale these solutions with majorcontribute to learning progression reported up to a transport service providers.16% contribution of built environment factors51.
A national strategy for promoting greater social andInclusive technology is also key to supporting economic participation should include considerationpeople with disabilities generally, and can have of evidence-based practice and tools that supportparticular relevance to autistic individuals to support inclusion in physical and digital spaces.communication and social inclusion.
Recommendation(s):
- Ensure full consideration of the physical and digital environments, as enablers of social and economic participation, within any national strategy or policy framework and associated research.
28
Term of Reference (L): The capacity and sustainability of advocacy, self advocacy and self-determination supports for autistic people, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities
In the research sphere, the benefits of co-production • similarly, the Australian Autism Research Council
include increased research quality through better has a number of autistic members and has two designed studies, more trustworthy conclusions co-chair positions, one at least to be filled by an and the potential to generate more relevant and autistic member; and
appropriate research that is responsive to the needs • two of the five members of the Autism Advisoryof people on the spectrum. Co-production supports Group to the NDIA are autistic.research implementation and translation as research
findings and interventions are more likely to be To support the aspirations and attainment of autistic accessible, useful and sustainable, and more widely adults in this regard, the Sylvia Rodger Academy disseminated. In addition, end-user involvement in (SRA), established under the auspices of Autism research co-production can increase empowerment, CRC, delivers nationwide programs in research personal development and self-esteem for co-production; leadership and advocacy; and individuals and autistic communities53,54,55,56,57,58. organisational governance. The Academy’s mission is to provide programs, pathways and networks Similar benefits may be gained through the that create communities where autistic people participation of individuals with disabilities in the fully contribute and influence policy, practice and direction, development and delivery of policies and culture in partnership with their peers. Currently, services. 14 autistic adults are completing the Governance In the autism community, both internationally and Program and 45 autistic adults have participated in in Australia, there has been a significant increase in the Future Leaders programs since 2018. Autistic the strength of autistic participation and leadership people have been involved in SRA since inception, in both advocacy and in delivery of services; for and at all levels of its work. This includes program example, with the Autistic Self-Advocacy Network development, content delivery, mentoring and (Australian and New Zealand) and the ICAN Network. strategic direction. Both organisations are participants in the CRC. In our experience, when given the opportunity More generally, the autistic community is increasingly to learn and contribute, autistic individuals have represented in the governance and management diverse and vital skills and attributes which would be of organisations supporting the community. For beneficial to Boards and other positions of influence. example: Examples include superior attention to detail, unique approaches to problem-solving and a strong sense
• a number of autism service providers have of justice – providing opportunities for individuals
appointed autistic individuals to Board and to develop and apply their skills, and for emerging management roles; organisations to develop good governance,
• the Australian Autism Alliance has a number of assisting the autistic community to make a greater
autistic members and has two co-chair positions, contribution to the autism community and society. one at least to be filled by an autistic member;
Recommendation(s):
- Continue to invest in capacity building in community-led advocacy and services through Information, Linkages and Capacity Building grants and other development programs enabling autistic adults to fully contribute as peers to policy, practice and research that impacts upon their lives.
29
References
1. National Collaborating Centre for Women’s and Children’s Health 16. Paynter, J.M., Ferguson, S., Fordyce, K., Joosten, A., Paku, S.,
(2011). Autism spectrum disorder in under 19s: Recognition, Stephens,. M, … Keen, D. (2017) Utilisation of evidence-based referral and diagnosis - Clinical guideline [128]. National Institute practices by ASD early intervention service providers. Autism, for Health and Care Excellence, London, England. 21(2), 167–180.
2. National Collaborating Centre for Mental Health (2012). Autism: 17. UN General Assembly (2006). Convention on the Rights of
Recognition, referral, diagnosis and management of adults on Persons with Disabilities, Article 24 – Education. Available at: the autism spectrum - National clinical guideline [142]. National https://www.un.org/development/desa/disabilities/convention Institute for Health and Care Excellence, London, England. on-the-rights-of-persons-with-disabilities/article-24-education. html (Accessed 1 June 2020)3. Taylor, L., Brown, P., Eapen, V., Harris, A., Maybery, M., Midford, S., & Whitehouse, A. (2016). Autism spectrum disorder diagnosis in 18. de Bruin, K. (2019). The impact of inclusive education Australia: Are we meeting best practice standards? Autism CRC, reforms on students with disability: an international Brisbane, Australia. comparison. International Journal of Inclusive Education, doi: 10.1080/13603116.2019.16233274. Whitehouse A., Evans, K., Eapen, V., & Wray, J. (2018). A national guideline for the assessment and diagnosis of autism spectrum 19. Australian Institute of Health and Welfare (2017). disorders in Australia. Autism CRC, Brisbane, Australia. Disability in Australia: Changes over time in inclusion and
participation in education. Available at: https://www.aihw.5. Bent, C., Barbaro, J., & Dissanayake, C. (2015). Mapping the gov.au/getmedia/34f09557-0acf-4adf-837d-eada7b74d466/ diagnosis of Autism Spectrum Disorders in children under 7 Education-20905.pdf.aspx (Accessed: 7 July 2020) years in Australia: 2010 – 2012. Medical Journal of Australia,
22(6), 317-320. doi: 10.5694/mja14.00328 20. Mann, G., Cuskelly, M., & Moni, K. (2018). An investigation of
parents’ decisions to transfer children from regular to special6. US Centers for Disease Control (2020). New ASD prevalence schools. Journal of Policy and Practice in Intellectual Disabilities, numbers show gaps are closing, but more work is needed. 15(3), 183-192. doi: 10.1111/jppi.12238 Available at: https://www.cdc.gov/ncbddd/autism/features/new-
asd-prevalence-numbers-show-gaps-are-closing.html (Accessed: 21. NSW Education Standards Authority (2019). Home Schooling 7 July 2020) Data reports relating to 2018.
7. Australian Bureau of Statistics (2018). Autism in Australia. 22. Szumski, G., Smogorzewska, J., & Karwowski, M. (2017).
Survey of Disability, Ageing and Carers (2018). Available Academic achievement of students without special educational at: https://www.abs.gov.au/AUSSTATS/abs@.nsf/ needs in inclusive classrooms: A meta-analysis. Educational Lookup/4430.0Main+Features102018. (Accessed: 7 July 2020) Research Review. doi:10.1016/j.edurev.2017.02.004
8. Randall, M., Sciberras, E., Brignell, A., Ihsen, E., Efron, D., 23. Magyar, C. I., & Pandolfi, V. (2012). Considerations for establishing
Dissanayake, C., & Williams, K. (2016). Autism spectrum disorder: a multi-tiered problem-solving model for students with autism Presentation and prevalence in a nationally representative spectrum disorders and comorbid emotional behavioral Australian sample. Australian & New Zealand Journal of disorders. Psychology in the Schools, 49(10), 975-987a Psychiatry, 50(3), 243–253. doi: 10.1177/0004867415595287 24. Heflin, L .J., & Isbell, J. S. (2012). Education through the
9. Tierney, S., Burns, J., & Kilbey, E. (2016). Looking behind the developmental stages: School-age children and adolescents. In
mask: Social coping strategies of girls on the autistic spectrum. D. Zager, M.L. Wehmeyer, & R.L. Simpson, Educating Students Research in Autism Spectrum Disorders, 2, 23, 73–83. with autism spectrum disorders: Research-based principles and practices (pp. 179-206). New York: Routledge.10. Navot, N., Jorgenson, A., & Webb, S. (2017). Maternal experience raising girls with autism spectrum disorder: A qualitative study. 25. Basham, J. D., Israel, M., Graden, J., Poth, R., & Winston, M. A. Child: Care, Health and Development, 43(4), 536–545. (2010). Comprehensive Approach to RTI: Embedding Universal
Design for Learning and Technology. Learning Disability. doi.11. Frenette, P., Dodds, L., MacPherson, K., Flowerdew, G., Hennen, org/10.1177/073194871003300403 B., & Bryson, S. (2013). Factors affecting the age at diagnosis of
autism spectrum disorders in Nova Scotia, Canada. Autism, 17(2), 26. Webster, A. A., Cumming, J., & Rowland, S. (2017). Empowering 184–195. parents of children with autism spectrum disorder: Critical decision-making for quality outcomes. Singapore Springer.12. Westwood, H., Mandy, W., & Tchanturia, K. (2017). Clinical evaluation of autistic symptoms in women with anorexia nervosa. 27. CAST (2018). Universal design for learning guidelines (Version Mol Autism. 2017;8:12. doi:10.1186/s13229-017-0128-x 2.2) (graphic organizer). CAST, Wakefield, USA.
-
Australian Autism Research Council (2019). Australian Autism 28. Carrington, S., Saggers, B., Webster, Am., Harper-Hill, K., & Research Council: 2019 Research Priorities. Brisbane. Available Nickerson, J. (2020) What Universal Design for Learning at: www.autismcrc.com.au/aarc (Accessed: 1 March 2020) principles, guidelines, and checkpoints are evident in educators’
descriptions of their practice when supporting students on the14. Sandbank, M., Bottema-Beutel, K., Crowley, S., Cassidy, M., autism spectrum? International Journal of Educational Research, Dunham, K., Feldman, J. I., Crank, J., Albarran, S. A., Raj, S., 102, Article number: 101583 1-11. Mahbub, P., & Woynaroski, T. G. (2020). Project AIM: Autism
intervention meta-analysis for studies of young children. Psychol 29. Lawson, L. P., Haschek, A., & Richdale, A. (2019). Study of Bull, 146(1), 1–29. doi.org/10.1037/bul0000215 Australian school leavers with autism (SASLA): Baseline profile
2018. Autism CRC, Brisbane, Australia. Available at: https://www.15. Lord, C., Brugha, T. S., Charman, T., Cusack, J., Dumas, G., Frazier, autismcrc.com.au/our-programs/adulthood/study-australian- T., … Veenstra-VanderWeele, J. (2020). Autism spectrum disorder. school-leavers-autism-sasla-15-25-years (Accessed: 7 July 2020) Nat Rev Disease Prim, 6(1), 5. doi:10.1038/s41572-019-0138-4
30. Hwang, Y. I., Srasuebkul, P., Foley, K.-R., Arnold, S., & Trollor, J. N. (2019). Mortality and cause of death of Australians on the autism spectrum. Autism Research, 12(5), 806-815. doi:10.1002/aur.2086
30
-
Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Occasional Paper No. 35. Available at: http://dx.doi.org/10.2139/ Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism ssrn.1792135 (Accessed: 7 July 2020)
spectrum disorder. Br. J. Psychiatry (2016). 208(3):232-238. 44. Tune Review (2019). Review of The National Disability Insurance doi:10.1192/bjp.bp.114.160192 Scheme Act 2013, David Tune AO PSM, December 2019.
-
Eapen, V., Grove, R., Aylward, E., Joosten, A.V., Miller, S.I., Van 45. Whitehouse, A., Varcin, K., Alvares, G., Barbaro, J., Bent, C., Der Watt, G., Fordyce, K., Dissanayake, C., Maya, J., Tucker, M., & Boutrus, M., et al. (2019). Pre-emptive intervention versus DeBlasio, A. (2017). Transition from early intervention program to treatment as usual for infants showing early behavioural risk primary school in children with autism spectrum disorder. World J signs of autism spectrum disorder: a single-blind, randomised Clin Pediatr 2017; 6(4): 169-175. controlled trial. The Lancet Child & Adolescent Health, 3(9):605-15.
-
Synergies Economic Consulting (2011). Economic Cost of Autism 46. National Disability Insurance Agency (2020). Report to the COAG Spectrum Disorder in Australia: Updated Study. Available at: Disability Reform Council for Q3. Available at: https://www.ndis. https://www.synergies.com.au/reports/economic-costs-of-autism- gov.au/about-us/publications/quarterly-reports (Accessed: 7 July spectrum-disorder-in-australia/ (Accessed: 7 July 2020) 2020)
-
The impact figures given for each of Autism CRC’s three current 47. den Houting, J., & Pellicano, E. (2019). A portfolio analysis of programs are derived from Socio-Economic Impact Analyses autism research funding in Australia, 2008-2017, Journal of undertaken for Autism CRC by VenturePro Pty Ltd in 2012 Autism and Developmental Disorders, 19. doi.org/10.1007/ and 2017. The figures represent the Net Present Value (NPV) s10803-019-04155-1 of successful delivery of the core objectives in each program
-
through to 2028, taking account of the time value of money, 48. Austin, R., & Pisano, G. (2017). Neurodiversity as a Competitive with a discount rate of approximately 5% per annum. The total Advantage, Harvard Business Review, May-June 2017, pp. 96-103. NPV across the three programs is $4.2 billion (or $7.6 billion in 49. Krzeminska, A., Austin, R., Bruyère, S., & Hedley, D. (2019). The absolute terms). advantages and challenges of neurodiversity employment in
- Lee, G. K., & Carter, E. W. (2012). Preparing transition-age organizations, Journal of Management & Organization (2019), 25, students with high-functioning autism spectrum disorders for 453–463 doi:10.1017/jmo.2019.58. meaningful work. Psychology in the Schools, 49, 988–1000. doi: 50. Donovan, R. (2016). “Translate Different into Value”, 2016 Annual
10.1002/pits.21651 Report: The Global Economics of Disability, The Return on
-
Stewart, D. (2013). Transitions to adulthood for youth with Disability Group. disabilities through an occupational therapy lens. SLACK 51. Barrett, P. et al. (2017). The Holistic Impact of Classroom Spaces Incorporated, Thorofare, USA. on Learning in Specific Subjects. Environment and Behavior. doi:
-
Hatfield, M., Ciccarelli, M., Falkmer, T., & Falkmer, M. (2018). 10.1177/0013916516648735. Factors related to successful transition planning for adolescents 52. United Nations (2019). International Day of Autism 2019. on the autism spectrum. Journal of Research in Special Available at: https://www.un.org/development/desa/en/news/ Educational Needs, 18(1), 3–14. doi: 10.1111/1471-3802.12388 social/intl-day-of-autism-2019.html (Accessed 7 July 2020)
-
Hatfield, M., Falkmer, M., Falkmer, T., & Ciccarelli, M. (2017b). 53. Cargo, M., & Mercer, S.L. (2008). The value and challenges of “Leaps of faith”: Parent and professional viewpoints on preparing participatory research: strengthening its practice. Annual Review adolescents on the autism spectrum for leaving school. Journal of Public Health, 29(1), 325-350. of Research in Special Educational Needs, 17(3), 187–197. doi: 10.1111/1471-3802.12377 54. Bailey, S., Boddy, K., Briscoe, S., & Morris, C. (2014). Involving disabled children and young people as partners in research: a
-
Hatfield, M., Falkmer, M., Falkmer, T., & Ciccarelli, M. (2017a). systematic review. Child: Care, Health and Development, 41(4), Effectiveness of the BOOST-A™ online transition planning 505–514. program for adolescents on the autism spectrum: A quasi randomized controlled trial. Child and Adolescent Psychiatry and 55. Kirby, P. (2004). A Guide to Actively Involving Young People Mental Health, 11(54), 1–12. doi: 10.1186/s13034-017-0191-2 in Research: For Researchers, Research Commissioners, and Managers. INVOLVE, Hampshire, UK.
-
Chasson, G. S., Harris, G. E., & Neely, W. J. (2007). Cost Comparison of Early Intensive Behavioral Intervention and 56. Puyalto, C., Pallisera, M., Fullana, J., & Vila, M. (2015). Special Education for Children with Autism. Journal of Child and Doing research together: a study on the views of advisors Family Studies, 16(3), 401-413. doi: 10.1007/s10826-006-9094-1 with intellectual disabilities and non-disabled researchers collaborating in research. Journal of Applied Research in
-
Peters-Scheffer, N., Didden, R., Korzilius, H., & Matson, J. (2012). Intellectual Disabilities. 29(2), 146-159. Cost comparison of early intensive behavioral intervention and treatment as usual for children with autism spectrum disorder in 57. Stantiszewska, S., Brett, J., Mockford, C., & Barber, R. (2011). the Netherlands. Research in Developmental Disabilities, 33(6), The GRIPP checklist: strengthening the quality of patient and 1763-1772 public involvement reporting in research. International Journal of Technology Assessment in Health Care, 27(4), 391-399.
-
Zwaigenbaum, L., Bauman, M. L., Choueiri, R., Kasari, C., Carter, A., Granpeesheh, D., … Natowicz, M. R. (2015b). Early intervention 58. Pellicano, E., Dinsmore, A., & Charman, T. (2014). Views on for children with autism spectrum disorder under 3 years of researcher-community engagement in autism research in the age: Recommendations for practice and research. Pediatrics, United Kingdom: a mixed-methods study. PLoS One, 9(10), 136(Supplement 1), S60-S81. e109946. doi: 10.1371/journal.pone.0109946.
-
Valentine, K., Rajkovic, M., Dinning, B., & Thompson, D, (2011)
Post-Diagnosis Support for Children with Autism Spectrum
Disorder, Their Families and Carers. Australian Department of
Families, Housing, Community Services and Indigenous Affairs,
31
Appendix 1 – Our Participants
Participant name Type Organisation type ABN
AEIOU Foundation Essential Industry / Private Sector / End-user 19 135 897 255
Autism Queensland Ltd Essential Industry / Private Sector / End-user 79 253 351 418
Autism Spectrum Australia (Aspect) Essential Industry / Private Sector / End-user 12 000 637 267
Autism New Zealand Essential Industry / Private Sector / End-user/
International
Curtin University Essential University 99 143 842 569
Griffith University Essential University 78 106 094 461
F. Hoffmann-La Roche Ltd Essential Industry / Private Sector / End-user/
International
La Trobe University Essential University 64 804 735 113
Mater Research Ltd Essential Industry / Private Sector / End-user 28 109 834 719
Queensland Department of Education and Training Essential State Government / End-user 76 337 613 647
Queensland University of Technology Essential University 83 791 724 622
University of New South Wales Essential University 57 195 873 179
University of Queensland Essential University 63 942 912 684
University of Western Australia Essential University 37 882 817 280
Affymetrix Inc Other Industry / Private Sector /End-user /
International
Amaze Other Industry/Private Sector/ End-user 15 600 724 949
Asperger Services Australia Other Industry / Private Sector / End-user 14 389 908 238
AssistiveWare Other Industry / Private Sector/
International
Australian Advisory Board for Autism Other Other / End-user 53 085 018 408
Australian College of Rural and Remote Medicine Other Other / End-user 12 078 081 848
Autism Association of South Australia Inc Other Industry / Private Sector/ End-user 41 905 977 886
Autism Association of Western Australia Inc Other Industry / Private Sector/ End-user 54 354 917 843
Autism Awareness Other Industry / Private Sector/ End-user 42 130 217 962
Autism Specific Early Learning and Care Centre - Other Industry / End-user 69 187 578 153
Anglicare SA
Autism Specific Early Learning and Care Centre - Other Industry / End-user 89 000 006 137
KU Children’s Services
Autism Specific Early Learning and Care Centre - Other Industry / End-user 64 804 735 113
La Trobe University Community Children’s Centre
Autism Specific Early Learning and Care Centre - Other Industry / End-user 19 135 897 255
Nathan QLD (AEIOU)
Autism Specific Early Learning and Care Centre – St Giles Other Industry / End-user 79 067 523 335
Autism Specific Early Learning and Care Centre - Other Industry / End-user 54 354 917 843
WA (AAWA)
Autistic Self Advocacy Network of Australia and New Other End-user 12 266 839 266
Zealand (ASAN AUNZ)
Autism Tasmania Other Industry / End-user 90 215 494 454
Autism West Other Industry / End-user 38 262 080 944
Brisbane Catholic Education Other Private sector / End-user 49 991 006 857
Catholic Education Commission of Victoria Other Private Sector / End-user 92 119 459 853
Catholic Education Office of WA Other Private Sector / End-user 97 244 688 522
32
Participant name Type Organisation type ABN
Children’s Health Queensland Hospital and Health Service Other State Government / End-user 62 254 746 464
Department of Health and Human Services Tasmania Other State Government 11 255 872 006
Department of Communities (Disability Services Other State Government / End-user 36 922 715 369
Commission), WA
Hear and Learn Other Industry / Private Sector 26 125 822 479
I CAN Network Other End-user 63 608 173 100
iiNet Ltd (Acquired by TPG Internet Pty Ltd in August 2015) Other Industry / Private Sector 48 068 628 937
Joseph Piven Other Individual / International
Macquarie University Other University 90 952 801 237
Minds and Hearts Other Industry / Private Sector/ End-user 51 128 736 103
National Rural Health Alliance Other Other / End-user 68 480 848 412
Pathwest Laboratory Medicine WA Other State Government 13 993 250 709
Renae Beaumont Enterprises Pty Ltd Other Industry 50 129 179 675
South Australian Group Enterprises (SAGE) Other Private Sector/ End-user 40 005 498 775
The Aspergers Syndrome Clinic Other Industry / Private Sector / End-user 39 090 503 601
The Association of Independent Schools Queensland Other Industry / Private Sector/ End-user 88 662 995 577
The Royal Children’s Hospital Other State Government / End-user 35 655 720 546
The Sydney Children’s Hospital Network Other State Government / End-user 53 188 579 090
University of Sydney Other University 15 211 513 464
University of Wollongong Other University 61 060 567 686
Wenn Lawson Other Individual 13 004 434 638
Western Australian Autism Diagnosticians Forum Inc Other Other / End-user 51 286 721 089
Other major partners
Aspect as manager of the Positive Partnerships program, funded by the Commonwealth Department of Education and Training – contract research services Commonwealth Department of Social Service – contract research services DXC Technology – Autism@Work employment initiative National Disability Insurance Agency – contract research services Salesforce – turnkeyCRC CRM and project management system (commercialised by Autism CRC) Specialisterne Australia – autism employment collaboration Telstra Foundation – myWay Employability development program
33
Our values AutismThe UniversityCRC of Queensland
Long Pocket Precinct
Level 3, Foxtail Building
80 Meiers Road
Inclusion Indooroopilly Qld 4068
Working together with those with the lived experience of autism in all we do
W autismcrc.com.au
Innovation @autismcrc New solutions for long term challenges
Independence
Guided by evidence-based research, integrity and peer review
Cooperation
Bringing benefits to our partners; capturing opportunities they cannot capture alone