Support with navigating the renting process and its related communication and interactions

(e.g., rental process is complex and hard to understand; lack of support to assist autistic people with understanding rental processes including rental contracts)

“The behaviour of real estate agents who manage rental properties. They are often the sort of people who try to take advantage, and Autistic people are often very vulnerable in that situation. The states that have clear rules about rental rights and responsibilities make this situation easier to deal with, but it’s still a huge problem. Oh! The biggest, maybe! Rental contract instability! Rents seem to go up every time the contract renews, which is usually every six months, which often means you have to move out. It’s horrendous. There is no certainty, so much fear and stress. I believe some people negotiate or some such, but that would involve dealing with shady real estate agents and reading their social cues (e.g., are they being serious or should I push here?) - a process that can be beyond the skills of many Autistic people. Getting a rental or home loan is extremely hard because of my lack of communication skills and my social anxiety. Getting bad references if you screw up when you can’t cope with work or life. Real Estates often perceive you as mentally challenged and won’t rent to you.” (ID 479)

14%

Feeling safe when living independently

(e.g., lack of robust housing or housing that is physically and psychologically suitable for the needs of autistic people; areas where public/social housing is available may be dangerous)

“Housing in dept housing estates can be very confronting, even dangerous to autistic people due to lots of social / drug and alcohol abuse fueling violence that gets targeted to the most vulnerable. Safe housing (by safe I mean safe to that person and their nervous system; sensory wise, accessibility wise, close to their connections etc.) is pretty much inaccessible to us.” (ID 300)

13%

Receiving financial support from the NDIS

(e.g., inadequate funding from NDIS to support housing needs; lack of accountability within government agencies related to housing support for autistic people)

“Lack of accountability from State Governments to provide especially for those with severe and profound autism buck passing between state and federal governments. NDIS should not artificially limit amount of SDA [Specialist Disability Accommodation] that can be provided. Lack of housing for supported independent living. The NDIS needs to provide accommodation for people like me in this matter. I am currently living in the private rental market in a very small duplex and paying high rent. I am concerned about this rent increasing and the cost of living. I also am concerned about social isolation and lack of both awareness and support.” (ID 775)

13%

Suitability of the accommodation structure

(e.g., lack of housing designed with consideration for sensory sensitivities and spatial needs of autistic people; autistic people unable to make modification to rental houses to meet their needs)

Autistic renters are unable to alter their homes to meet Autism specific needs such as sensory needs. Small lot sizes make neighbours noisier, which I struggle to cope with and there is a lack of privacy from neighbours. Noise and other sensory-related issues” (ID 290)

12%

10=

Lack of support with the rental process and with understanding a tenant’s rights, having pets, routine inspections

(e.g., lack of support to assist autistic people in understanding their rights, responsibilities, and expectations related to rentals)

1%

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“Landlords constantly showing up cuz they don’t trust you cuz you’re different, long contracts we usually don’t get to read through until after the fact, having to be social to even get a place” (ID 202)

Living independently (e.g., lack of independent living skills among autistic people who desire to live alone or outside the family home)

“Not having the life skills to live on their own. I have a son who would love to move out eventually but would struggle immensely house sharing with people he doesn’t know. He struggles to clean, cook, maintain a yard and access emergency services” (ID 594)

1%

12=

Discrimination and social issues

“Real estates often perceive you as mentally challenged and won’t rent to you. Or they think you don’t deserve to be on a Disability Pension. See us a damaging or destructive person. The whole country is having housing issues but we get put further back on the list than others.” (ID 793)

“Underestimation of their capability to live alone or hold a job.” (ID 1142)

Support for disabled owner/ occupiers and tenants

“Gaps in housing supports - people with autism are not eligible for supported independent living but almost never gain success in the open rental market meaning they are forced to stay at home with parents.” (ID 247)

“Usually living with parents or care-givers, not even think of future housing issue. Don’t have capacity to move out or to live independently Don’t know about housing services, no support to access it.” (ID 667)

Support staff and government agencies

Question 2: What do you think is causing these problems?

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(e.g., limited working capacity and income potential for autistic people; high unemployment or under-employment of autistic people)

“Many autistic people have significant permanently limited work capacity but would not qualify for the Disability Support Pension due to unfair criteria. Money - holding down a job while being autistic can be hard.” (ID 81)

Support with systems and processes

(e.g., poorly integrated government systems; long processes to access support and lack of support to navigate government systems)

“The SDA process is too long and difficult to manage. It took three years for us to go through with our young person, and $11,000 in assessments. Inability to Advocate for themselves and/or their families or unable to get access to an advocate support service. I can no longer access the NDIS because the amount of work involved to gain access to the support I need has become too overwhelming for me to comprehend.” (ID 91)

10%

Stigma and discrimination

(e.g., lack of awareness among stakeholders about the discrimination autistic people experience; limited support available unless perceived as ‘high needs;’ real estate agents will not rent to autistic people if perceive them as mentally challenged)

“Shame and stigma for the person experiencing difficulties. People automatically assuming the worst about people who are different.” (ID 381)

Renting and its related communications are complex

(e.g., lack of understanding among autistic people about the rental process, rules and social and non-verbal cues that guide negotiations when renting)

“The rental system. It’s horrendous. Horrible for everyone, but particularly for the more vulnerable, such as Autistic people… Rents seem to go up every time the contract renews, which is usually every six months, which often means you have to move out. It’s horrendous. There is no certainty, so much fear and stress. I believe some people negotiate or some such, but that would involve dealing with shady real estate agents and reading their social cues (e.g., are they being serious or should I push here?) - a process that can be beyond the skills of many Autistic people.” (ID 479).

7%

Lack of support with activities related to housing

(e.g., lack of support to help autistic people with housing processes such as applying for rental or getting home loans; poor understanding among autistic people of how to run a household)

“No supports available unless perceived to be ‘high needs’. Disability was mostly associated with physical access to housing. Autistic needs relate closer to normal housing but with some executive functioning assistance - hence ILO. The environment and each autistic personality may be triggers to other autistic people” (ID 381)

7%

Unknowledgeable support staff

(e.g., support staff lack sufficient education; understanding of autism and ill-equipped to help advocate for autistic people)

“Inability to Advocate for themselves and/or their families or unable to get access to an advocate support service.” (ID 1351)

“Ignorant staff and not qualified.” (ID 597)

7%

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Government policies are a barrier

(e.g., lack of government investment or interventions to improve access to public/social housing; lack of policies that support autistic people with housing access)

“Both commonwealth and state gov not investing sufficiently in programs that could lead to more effective housing solutions.” (ID 1227)

7%

There is limited understanding about the abilities and capacity of autistic people

(e.g., lack of understanding among decision-makers about the needs and capacity of autistic people to guide funding allocations and policy)

“People who make decisions have very little knowledge of the real impact a severe ASD diagnosis has on a person and family and they restrict access to services and funding that is desperately required to keep the person with ASD safe.” (ID 835)

7%

14

NDIS requirements

The few people illegally accessing NDIS make it even harder and more overwhelming for those of us who actually NEED the NDIS. I can no longer access the NDIS because the amount of work involved to gain access to the support I need has become too overwhelming for me to comprehend. (ID 162)

Enforcement of absurd or nonsensical requirement which interferes with other productive processes. (ID 178)

6%

15

Lack of information/ difficulty accessing info

“Their parents or care givers don’t know about housing services or don’t have a long term planning.” (ID 667)

“Forms and processes for rental or buying a property are designed for neurotypicals.” (ID 837)

5%

16

Criteria for services/ assistance

“Many autistic people have significant permanently limited work capacity but would not qualify for the Disability Support Pension due to unfair criteria. Autistic people require significant environments to be successful and healthy but these needs are now too unaffordable to be met.” (ID 81)

“Not recognising the amount of unidentified people in community. No supports available unless perceived to be ‘high needs’.” (ID 381)

5%

17

Lack of autistic input in decision making

“Assumptions. No input from the person who is Autistic or neurodiverse and decide for them not with them.” (ID 369)

“Cost effectiveness valued over dignity and choice in living in preferred space. Differences in values towards chores and hygiene compounded by lack of practice in independence.” (ID 492)

5%

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Question 3: What do you think could prevent or reduce these problems?

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More housing options for autistic people (incl. for singles/ families/ shared, supported accommodation)

(e.g. increase funding for single occupancy arrangements; improve selection processes for shared housing to reduce interpersonal conflicts; provide more need/preference-based housing options)

“More individual supports and services for those who wish to live alone. More individual flats or villas for individual accommodation. More options of smaller one bedroom houses. Develop concepts of ILO much more with perhaps some innovative arrangements” (ID 553)

14%

More accessible financial assistance

(e.g., better pensions to account for cost of living and housing expenses; provide rent assistance; flexibility in requirements for Disability Support Pension)

“Loosen the restrictive requirements for the disability support pension so autistic people can access appropriate financial assistance. Many people do not get funding or the Disability Support Pension, even though they have autism because they are considered ‘too high functioning’, despite the fact that they may have extreme difficulty getting and keeping a job. Make DSP more accessible for autistic people” (ID 81)

13%

More autism-specific and autism-friendly accommodation

(e.g., recognise unsuitable housing; increase autism specific housing; provide specialised trained staff for supported living)

“Create housing and supported living opportunities for neurodivergent people who do not require carers but do require consultative mentorship. We need Autism specific disability homes staffed by specially trained staff. Accommodation specifically for adults on the autism spectrum with privacy issues and other areas being addressed.” (ID 247)

11%

Improved and manageable renting system

(e.g., improve government policies and regulations that cap the prices of rentals; regulations that allow autistic people to make some modifications to rental properties)

“The rental market needs regulations which allow Autistic renters to make subsidised changes to their homes (e.g., in types of heating/cooling and paint colours). The government needs to put renters first. Capping rent so it can’t go up every six months, making it harder for landlords to send their minions (i.e. the real estate agents) out to harass their tenants.” (ID 290)

11%

Improved access to public housing, reducing wait times

(e.g., increase funding of social housing; provide more homelessness support; have special listings for autistic people)

“Reduce the waiting lists for public housing. A special listing for people with autism.” (ID 528)

11%

Support to obtain housing

“Better advertising of online applications. More options of smaller one bedroom houses. More support with legal processes- eg buying a house” (ID 553)

“Advocacy and services to support independent living processes.” (ID 860)

10%

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12

Acceptance and understanding - reduced discrimination, improved acceptance

“Improved disability discrimination laws and access to make complaints. Financial assistance to Autistic individuals who can work as well as those who can’t.” (ID 51)

“Acknowledgement of the value of diversity and neurodiversity; acknowledgement of the different ways that different people contribute to society” (ID 955)

9%

13=

Support - social and community support

“More autistic run support programs for autistic individuals. Financial ‘translators’ that autistic people can access for large life changing commitments and decisions.” (ID 446)

“Community spaces that have supported living, eg. supported living estates where flats and units are available for independent living with supports near by.” (ID 1282)

8%

Housing - change criteria for support to include a wider range of autistic people

“Having more housing, options for people mid-level support needs under NDIS, not a simple yes or no eligibility on criteria that is not made public. Housing put aside, especially for people with disabilities. People with disabilities need priority access to public housing. There also needs to be more disability-specific housing and this needs to be available to people with lower needs as well, such as people with ASD who only need a few hours per day as far as assistance.” (ID 60)

“A fairer access system, increased accountability on service providers to be trained, qualified and professional.” (ID 1095)

8%

15

Accessibility - less complex systems and processes

“Make it easy for family-centred support models within the NDIS. Where BSPs [Behaviour Support Practitioners] and Q&S [Quality and Safeguards] Commission are in play there needs to be easy registration options or other more suitable arrangements.” (ID 790)

6%

16

Support from schools and education

Resources/ training on how to fix simple problems - e.g. purchasing a suitable lightbulb and replacing a light, replacing tap washers etc). Support with funding - e.g budgeting/ pension/ suitable job (ID 1527)

5%

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Question 4: What is working well, or has worked well, in relation to autistic people in relation to housing?

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When autistic people live with other neurodivergent people

(e.g., better compatibility when living with other neurodivergent people; mutual understanding and more respect)

“Living with other neurodivergent people. Housing with others whom they are compatible with not just all disability (not segregating).” (ID 1227)

8%

When there is financial support for housing and independent living

(e.g., availability of financial assistance such as rent assistance but increased funding for housing is needed)

“RENT ASSISTANCE IS GOOD BUT NOT ENOUGH.” (ID 1199)

8%

When there is a choice for varied types of accommodation that are safe

(e.g., having a choice in housing option; housing options that are safe from violence and interpersonal conflict)

“I like being independent and living on my own without random people showing up unannounced so being in my own peace is definitely a plus. Low density social housing options that allow for independence, tenancy sustainment and quality of life.” (ID 226)

7%

When there are supports available for shared accommodation

(e.g., low density social housing; adapted housing with access to support as needed)

“Disability housing with Supports in place.” (ID 1227)

7%

When there are autism friendly accommodations available

(e.g., having people with similar interest and lifestyles; accommodations that are simple and easy to navigate)

“Special housing/complex for disabled people. From lived experience with a family member I know that the Autistic person is happier, they feel safe, they have something of their own, and something to be proud of. They have their own privacy, and space. Their mental health stabilises. They feel like everyone else.” (ID 1217)

7%

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Appendix H-2: Umbrella review search terms

Databases Searched (title, abstract, and key words)

• Cochrane
• EMBASE
• Emerald
• Eric ProQuest
• Google Scholar
• Medline
• PsycInfo
• PubMed
• Scopus
• Web of Science

Search Terms

The following search terms were used to identify relevant articles

Note: only articles relevant to housing (explicitly or because they are general) should be included.

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Inclusion and exclusion criteria

General inclusion criteria are below. The study must meet all of these to be included.

1. The article reports on a review of the literature that was undertaken systematically. A review will be considered “systematic” if it: (1) includes a clear statement of the purpose of the review; (2) describes the search strategy (i.e., key search terms, multiple relevant databases, specification of search limits); (3) indicates the criteria used to select studies for inclusion; and (4) presents all findings relevant to the main purpose of the review.
2. The article must focus on autistic (human) participants, or if it is part of a review on broader conditions, the articles on autistic human participants must be reported on separately.
3. The article must report on articles relating to an aspect of employment
4. The article must be published in a peer-reviewed journal

The exclusion criteria are listed below. A study only needs to meet one of these criteria to be excluded:

1. Articles or reviews that do not meet the criteria to be considered “systematic” (for example (for example, narrative and unstructured reviews, primary studies, opinions, commentaries, letter, book chapters, conference abstracts or editorials)
2. Umbrella reviews, rapid reviews, or “reviews of reviews”
3. Reviews that do not focus on autism, do not report autistic participant studies separately or do not report on human studies

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Appendix H-3: PRISMA diagram

                           Page 211 of 911

Appendix H-4: References

Black, M. H., McGarry, S., Churchill, L., D’Arcy, E., Dalgleish, J., Nash, I., … & Girdler, S. (2022). Considerations of the built environment for autistic individuals: A review of the literature. Autism, 26(8), 1904-1915.

Dargue, N., Adams, D., & Simpson, K. (2022). Can characteristics of the physical environment impact engagement in learning activities in children with autism? A systematic review. Review Journal of Autism and Developmental Disorders, 9, 143-159.

Nguyen, P., d’Auria, V., & Heylighen, A. (2022). Residential design for adults on the autism spectrum: a scoping review. Open House International, (ahead-of-print).

Tola, G., Talu, V., Congiu, T., Bain, P., & Lindert, J. (2021). Built environment design and people with autism spectrum disorder (ASD): A scoping review. International Journal of Environmental Research and Public Health, 18(6), 3203.

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Appendix H-5: Independent living umbrella review

Umbrella review search terms

Databases searched

The following databases (title, abstract, keywords) were searched:

• Cochrane
• EMBASE
• ERIC
• Emerald
• Medline
• PsycINFO
• PubMed
• Scopus
• Web of Science
• Google scholar

Search terms

Note: only articles relevant to independent living (explicitly or because they are general) were included.

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PRISMA Diagram

References from other sources (n = 0) Citation searching (n = 0) Grey literature (n = 0)

Studies from databases/registers (n = 690)

References removed (n = 34)

• Duplicates identified by Covidence (n = 31)
• Duplicates identified manually (n = 3)

Studies screened (n = 656) -> Studies excluded (n = 627)

Studies sought for retrieval (n = 29) -> Studies not retrieved (n = 1)

Studies assessed for eligibility (n = 28) -> Studies excluded (n = 10)

• Not independent living specific (n = 8)
• Not autism specific (n = 2)

Studies included in review (n = 18)

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References

Aljehany, M. S., & Bennett, K. D. (2019). Meta-analysis of video prompting to teach daily living skills to individuals with autism spectrum disorder. Journal of Special Education Technology, 34(1), 17-26.

Auld, C., Foley, K. R., & Cashin, A. (2022). Daily living skills of autistic adolescents and young adults: A scoping review. Australian Occupational Therapy Journal, 69(4), 456-474.

Bennett, K. D., & Dukes, C. (2014). A systematic review of teaching daily living skills to adolescents and adults with autism spectrum disorder. Review Journal of Autism and Developmental Disorders, 1, 2-10.

Flynn, L., & Healy, O. (2012). A review of treatments for deficits in social skills and self-help skills in autism spectrum disorder. Research in Autism Spectrum Disorders, 6(1), 431-441.

Hong, E. R., Ganz, J. B., Mason, R., Morin, K., Davis, J. L., Ninci, J., … & Gilliland, W. D. (2016). The effects of video modeling in teaching functional living skills to persons with ASD: A meta-analysis of single-case studies. Research in Developmental Disabilities, 57, 158-169.

Hong, E. R., Ganz, J. B., Morin, K., Davis, J. L., Ninci, J., Neely, L., & Boles, M. B. (2017). Functional living skills and adolescents and adults with autism spectrum disorder: A meta-analysis. Education and Training in Autism and Developmental Disabilities, 52(3), 268-279.

Hrabal, J. M., Davis, T. N., & Wicker, M. R. (2022). The use of technology to teach daily living skills for adults with autism: A systematic review. Advances in Neurodevelopmental Disorders, 1-16.

Kirby, A. V., Baranek, G. T., & Fox, L. (2016). Longitudinal predictors of outcomes for adults with autism spectrum disorder: Systematic review. OTJR: Occupation, Participation and Health, 36(2), 55-64.

Marcotte, J., Grandisson, M., Piquemal, C., Boucher, A., Rheault, M. E., & Milot, E. (2020). Supporting independence at home of people with autism spectrum disorder: Literature review. Canadian Journal of Occupational Therapy, 87(2), 100-116.

McGinnis, K., Gerow, S., Gregori, E., & Davis, T. (2022). Caregiver-Implemented Interventions for Autistic Adolescents and Young Adults: A Systematic Literature Review. Journal of Developmental and Physical Disabilities, 1-22.

Munsell, E. G., & Coster, W. J. (2021). Scoping review of interventions supporting self-management of life tasks for youth with high functioning ASD. Exceptionality, 29(2), 81-94.

Neely, L. C., Ganz, J. B., Davis, J. L., Boles, M. B., Hong, E. R., Ninci, J., & Gilliland, W. D. (2016). Generalization and maintenance of functional living skills for individuals with autism spectrum disorder: A review and meta-analysis. Review Journal of Autism and Developmental Disorders, 3, 37-47.

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Palmen, A., Didden, R., & Lang, R. (2012). A systematic review of behavioral intervention research on adaptive skill building in high-functioning young adults with autism spectrum disorder. Research in Autism Spectrum Disorders, 6(2), 602-617.

Skjoldborg, N. M., Bender, P. K., & Jensen de López, K. M. (2022). The Efficacy of Head-Mounted-Display Virtual Reality Intervention to Improve Life Skills of Individuals with Autism Spectrum Disorders: A Systematic Review. Neuropsychiatric Disease and Treatment, 2295-2310.

Syriopoulou–Delli, C. K., & Sarri, K. (2022). Video-based instruction in enhancing functional living skills of adolescents and young adults with autism spectrum disorder and their transition to independent living: a review. International Journal of Developmental Disabilities, 68(6), 788-799.

Taconet, A. V., Lombardi, A. R., Madaus, J. W., Sinclair, T. E., Rifenbark, G. G., Morningstar, M. E., & Langdon, S. N. (2023). Interventions Focused on Independent Living Skills for Youth With Intellectual Disability or Autism Spectrum Disorder. Career Development and Transition for Exceptional Individuals, 21651434231152200.

Wertalik, J. L., & Kubina, R. M. (2017). Interventions to improve personal care skills for individuals with autism: A review of the literature. Review Journal of Autism and Developmental Disorders, 4, 50-60.

Yakubova, G., & Chen, B. B. (2022). Parent-Implemented Video-Based Intervention to Teach Autistic Children: an Evidence-Based Systematic Review. Review Journal of Autism and Developmental Disorders, 1-24.

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Appendix I: Justice

Appendix I-1: Content analysis categories

Question 1: What are three problems that autistic people experience when accessing, or trying to access, the justice system?

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Autistic language and communication styles or preferences are not accounted for or are misinterpreted

(e.g., autistic people’s communication style/needs not respected or heard).

“Police and courts not being able to talk at their level of understanding and mistaking not understanding questions asked as lying.” (ID 528)

“Not being heard or understood by law enforcement and the justice system.” (ID 1004)

20%

Autistic people feeling scared of, dismissed by, or experiencing discrimination from those in justice system

(e.g., being treated as having less rights than non-autistic people; not getting a fair say/fair defence).

“The fear that professionals instil into people with Autism.” (ID 1303)

“Rights and interests are not addressed or even recognised.” (ID 1436)

18%

Autistic people may not understand laws, legal or justice system

(E.g., autistic people may not understand legal systems/processes; may not understand, or may have a different perspective of, what they have done).

“Not really knowing what [it’s] all about. others thinking the person with autism does understand [what’s] happening when they engage with justice system when they do not or at least not fully.” (ID 1093)

“They could be misled by the police into a false confession because they are easily led, want to please and may believe it if the police inform them they do not need a lawyer.” (ID 1172)

12%

Increased risk of entering criminal justice system including through manipulation, coercion, or not fully understanding the implications of an act

(e.g., autistic people’s trust/naivety may mean they do not recognise when they are victims of crime).

“People with autism are being manipulated and coerced by criminals to commit crimes they have no understanding of- even if they have high IQ. I have a university degree but was naive when someone asked me to hold a brown paper bag full of drugs. He told me there was ‘stuff’ in the bag and I believed him. It was only when I told the story to someone else they told me it was illegal and I could have been convicted of assisting with drug dealing.” (ID 60)

10%

Limited identification or understanding of undiagnosed autism and/or co-occurring conditions

(e.g., behaviours of undiagnosed autistic people may be misinterpreted as criminal; lack of understanding around higher incidence of mental health challenges in autistic population).

“Lack of understanding of co-occurring conditions” (ID 910)

“[Many] incarcerated people would qualify for a diagnosable mental health “disorder” many are undiagnosed neurodivergent” (ID 974)

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Question 2: What do you think is causing these problems and sample quote from responses

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Undiagnosed autism and no pathway to receive a diagnosis with justice system

(e.g., lack of diagnosis of autism; lack of diagnosis of co-occurring conditions).

“Law enforcement is not equipped to deal with undiagnosed disabilities such as ASD.” (ID 60)

“[Autism] assessment of people in judicial system is flawed and inadequate.” (ID 1499)

7%

Autistic people experiencing ableism and other forms of discrimination/indifference from those in justice system

(e.g., discrimination of those with intersectional identities; police aggression).

“Systemic issues and intersectional discrimination.” (ID 637)

“Police too aggressive and not listening (I have physical bruises and cuts).” (ID 1475)

7%

Autism characteristics may increase vulnerability to becoming involved in justice system

(e.g., criminals identify autistic people as gullible and exploitable; autistic people can experience grooming and predatory behaviour).

“Vulnerability to social isolation and malicious group influences.” (ID 492)

“Not being able to differentiate between who is a ‘good’ friend and who is a ‘bad’ friend.” (ID 1212)

6%

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Question 3: What do you think could prevent or reduce these problems?

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More neurodivergent or trained/caring professionals within the justice system

(e.g., specialised staff within the justice system; employing autistic/neurodivergent correctional officers).

“Employment of neurodivergent individuals at all levels.” (ID 501)

“Actually employ people who understand and care in all the systems that try and prevent a person from being engaged in the justice system. I had a client in his 20’s who was functioning at 2 year old level and could not speak so would enter shops and take items — and was charged for shop lifting and then thrown in Jail — he was mentally 2 years old. Everyone feared him because he was 7 foot tall.” (ID 853)

6%

Develop a means to better identify that a person is autistic (e.g., through assessment and diagnostic services within the justice system and more broadly; identification cards, etc.)

(e.g., diagnostic assessments should be available for those in the justice system)

“On licence or identification stating [autistic] with need for quiet tone, gentle lights and extra processing or something equivalent.” (ID 596)

“Clinical assessment for all individuals at risk of a custodial sentence (not a court clinician but an experienced consultant with appropriate qualifications).” (ID 426)

5%

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Question 4: What is working well, or has worked well, in relation to autistic people accessing the justice system?

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Appendix I-2: Umbrella review search terms

The following search terms were used for the respective databases:

Cochrane, Embase, Emerald, ERIC, Medline, PsycINFO, PubMed, Web of Science (autis* OR ASD OR ASC OR Asperger* OR pervasive developmental disorder OR PDD) AND (CJS OR Prison OR Probation OR Court OR Secure OR Forensic OR Crim* OR Offen* OR Correction* OR Witness OR justice OR victim OR legal OR law OR police OR judicial OR court* OR sentencing OR judge OR law enforcement OR delinquents OR secure OR HSPC OR Custod*) AND (systematic review* OR scoping review OR narrative review OR systematic literature review* OR systematic quantitative literature review OR evidence synthes* OR meta-analy* OR meta-regression*)

Scopus (autis* OR ASD OR ASC OR Asperger* OR “pervasive developmental disorder” OR PDD) AND (CJS OR Prison OR Probation OR Court OR Secure OR Forensic OR Crim* OR Offen* OR Correction* OR Witness OR justice OR victim OR legal OR law OR police OR judicial OR court* OR sentencing OR judge OR “law enforcement” OR delinquents OR secure OR HSPC OR Custod*) AND (“systematic review*” OR “scoping review” OR “narrative review” OR “systematic literature review*” OR “systematic quantitative literature review” OR “evidence synthes*” OR meta-analy* OR meta-regression*)

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Appendix I-3: PRISMA diagram

Records identified from: Cochrane (n = 20), Embase (n = 107), Emerald (n = 50), ERIC (n = 16), Medline (n = 49), PsycINFO (n = 88), PubMed (n = 71), Scopus (n = 175), Web of Science (n = 210)

Total records: n = 786

Duplicate records removed automatically by Covidence and manually before screening (n = 336)

Records screened (n = 450) -> Records excluded (n = 419)

Full-text reviews completed (n = 31) -> Studies excluded following full-text review:

• Reason 1: Did not focus on the criminal justice system (n = 3)
• Reason 2: Did not focus on autism or autism studies were not reported separately (n = 6)
• Reason 3: Review was not systematic (n = 2)

Studies included in umbrella review (n = 20)

(Template from Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D et al. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372 (71). doi: 10.1136/bmj.n71)

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Appendix I-4: References

Allely, C. S. (2018). A systematic PRISMA review of individuals with autism spectrum disorder in secure psychiatric care: prevalence, treatment, risk assessment and other clinical considerations. Journal of Criminal Psychology, 8(1), 58–79. https://doi.org/10.1108/jcp-06-2017-0028

Allely, C. S. (2019). Firesetting and arson in individuals with autism spectrum disorder: a systematic PRISMA review. Journal of Intellectual Disabilities and Offending Behaviour, 10(4), 89–101. https://doi.org/10.1108/jidob-11-2018-0014

Allely, C. S., & Cooper, P. (2017). Jurors’ and judges’ evaluation of defendants with autism and the impact on sentencing: A systematic preferred reporting items for systematic reviews and meta-analyses (PRISMA) review of autism spectrum disorder in the courtroom. Journal of Law and Medicine, 25(1), 105–123.

Allely, C. S., & Creaby-Attwood, A. (2016). Sexual offending and autism spectrum disorders. Journal of Intellectual Disabilities and Offending Behaviour, 7(1), 35–51. https://doi.org/10.1108/jidob-09-2015-0029

Allely, C. S., & Dubin, L. (2018). The contributory role of autism symptomology in child pornography offending: why there is an urgent need for empirical research in this area. Journal of Intellectual Disabilities and Offending Behaviour, 9(4), 129–152. https://doi.org/10.1108/jidob-06-2018-0008

Allely, C. S., Minnis, H., Thompson, L. M., Wilson, P., & Gillberg, C. (2014). Neurodevelopmental and psychosocial risk factors in serial killers and mass murderers. Aggression and Violent Behavior, 19(3), 288–301. https://doi.org/10.1016/j.avb.2014.04.004

Bjørkly, S. (2009). Risk and dynamics of violence in Asperger’s syndrome: A systematic review of the literature. Aggression and Violent Behavior, 14(5), 306–312. https://doi.org/10.1016/j.avb.2009.04.003

Collins, J., Horton, K., Ives, E. G., Murphy, G. P., & Barnoux, M. F. (2022). A systematic review of autistic people and the criminal justice system: An update of King and Murphy (2014). Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-022-05590-3

Cooper, D. D., Uppal, D., Railey, K. S., Wilson, A. A., Maras, K., Zimmerman, E., Bornman, J., & Shea, L. (2022). Policy gaps and opportunities: A systematic review of autism spectrum disorder and criminal justice intersections. Autism, 26(5), 1014–1031. https://doi.org/10.1177/13623613211070341

Hellström, L. (2019). A systematic review of polyvictimization among children with attention deficit hyperactivity or autism spectrum disorder. International Journal of Environmental Research and Public Health, 16(13), 2280. https://doi.org/10.3390/ijerph16132280

Im, D. S. (2016). Template to perpetrate: an update on violence in autism spectrum disorder. Harvard Review of Psychiatry, 24(1), 14–35. https://doi.org/10.1097/hrp.0000000000000087

King, C., & Murphy, G. H. (2014). A systematic review of people with autism spectrum disorder and the criminal justice system. Journal of Autism and Developmental Disorders, 44(11), 2717–2733. https://doi.org/10.1007/s10803-014-2046-5

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Melvin, C., Langdon, P. E., & Murphy, G. H. (2017). Treatment effectiveness for offenders with autism spectrum conditions: a systematic review. Psychology Crime & Law, 23(8), 748–776. https://doi.org/10.1080/1068316x.2017.1324027

Mercer, J., & Allely, C. S. (2020). Autism spectrum disorders and stalking. Journal of Criminal Psychology, 10(3), 201–218. https://doi.org/10.1108/jcp-01-2020-0003

Railey, K. S., Love, A. M. A., & Campbell, J. A. (2020). A systematic review of law enforcement training related to autism spectrum disorder. Focus on Autism and Other Developmental Disabilities, 35(4), 221–233. https://doi.org/10.1177/1088357620922152

Railey, K. S., Love, A. M. A., & Campbell, J. A. (2021). A scoping review of autism spectrum disorder and the criminal justice system. Review Journal of Autism and Developmental Disorders, 8(1), 118–144. https://doi.org/10.1007/s40489-020-00203-0

Rutten, A. X., Vermeiren, R., & Van Nieuwenhuizen, C. (2017). Autism in adult and juvenile delinquents: a literature review. Child and Adolescent Psychiatry and Mental Health, 11(1). https://doi.org/10.1186/s13034-017-0181-4

Schnitzer, G., Terry, R., & Joscelyne, T. (2020). Adolescent sex offenders with autism spectrum conditions: currently used treatment approaches and their impact. Journal of Forensic Psychiatry & Psychology, 31(1), 17–40. https://doi.org/10.1080/14789949.2019.1659388

Sreckovic, M. A., Kenney, C., K., & Wallace, M. (2022). Autism training for law enforcement officers: A scoping review. Journal of Autism and Developmental Disorders https://doi.org/10.1007/s10803-022-05692-y

Trundle, G., Jones, K., Ropar, D., & Egan, V. (2022). Prevalence of victimisation in autistic individuals: A systematic review and meta-analysis. Trauma, Violence, & Abuse, 152483802210936. https://doi.org/10.1177/15248380221093689

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Appendix I-5: Policy search strategy

Step 1

Criminal Justice System sectors were identified using the Parliament of Australia website: https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/rp/rp1819/Quick_Guides/Crime

Federal departments, oversight bodies, and professional associations were searched. All legislation in force was searched using the Federal Register of Legislation: https://www.legislation.gov.au/

Step 2

Key documents (including policies, guidelines, plans, and statements) relating to the national sectors and sub-sectors identified were sourced from Federal Department websites, related

Key documents were searched for the terms “autis*”, “disab*” and related terms defined within the documents (e.g., “cognitive impairment”, “mental incapacity”).

Relevant sections were extracted.

Step 3

Relevant State and Territory government departments and registers of legislation were searched as well as state-based representative bodies for the legal profession.

Key documents (including policies, guidelines, plans, and statements) were sourced. Key documents were searched for the terms autis* and disab* and related terms defined within the documents (e.g., “cognitive impairment”, “mental incapacity”). Relevant sections were extracted.

Documents mentioning disability only in relation to workplace hiring policies within the sector were excluded, as were plans or strategies that were no longer current.

Step 4

A general Google search was then conducted to ensure that key documents had not been missed during Steps 1-3.

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Appendix J: Mental health services

Appendix J-1: Content analysis categories

Question 1: What are three problems that autistic people experience when accessing, or trying to access, mental health care services?

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Insufficient availability/access of appropriate services

(e.g., lack of services specialising in autism; long distance to travel)

“Services [are] often geographically difficult to access requiring children to miss a lot of school to attend appointments and parents to miss work to drive children to and from appointments (in my case having to move to part-time work to support driving my child to appointments)” (ID 1131)

20%

Misdiagnosis of autism and/or co-occurring conditions

(e.g., misdiagnosing autism as, for example, a personality disorder; diagnostic overshadowing)

“I’ve been in and out of therapy my whole life, at one point was diagnosed with emotional [deprivation] disorder. I had an inkling when my daughter was small and I saw it in her then [realised] it was me too. I think I suggested it in therapy but it must have seemed absurd to the psychologist. Now I know, and I know my (dec) partner was autistic and that my mum likely is and so on.” (ID 477)

“I’ve seen professionals for years and been misdiagnosed with anxiety, social anxiety, depression, and PTSD. I have none of these conditions.” (ID 1346)

10%

Lack of knowledge or understanding of the interaction between autism and co-occurring conditions including mental health problems

(e.g., lack of knowledge of mental health issues and experiences for autistic people; lack of understanding of co-occurring conditions including ADHD and mental health)

“Finding a competent mental health professional that really understands the autistic experience of comorbid conditions such as anxiety, OCD, depression - that the autistic expression of these conditions may be different, especially if they also have intellectual disability.” (ID 91)

7%

Strategies not tailored for the individual client or neurodivergent people

(e.g., not tailored for individual needs or preferred goals; neurotypical strategies do not always work for autistic people)

“Mental health workers often try to use regular interventions like CBT which isn’t always suitable for neurodivergent people, or they’re not well versed in what autistic people actually need. One example is being asked “Where do you feel that in your body?” Well, autistic people sometimes don’t feel like things hunger etc, how can we be expected to know where we feel a feeling, that usually we struggle to even name the feeling in the first place” (ID 288)

7%

Access refused due to autism diagnosis

(e.g., refusal of autistic client for fear of doing harm; services do not support autistic people)

“CAMHS (Child and Adolescent Mental Health Service - WA) refusing to support children and teenagers with ASD who also have mental health concerns. Referrals are often knocked back purely on the basis of disability without taking into account the individuals mental health needs.” (ID 410)

“Professionals may feel fearful of doing harm and therefore refuse to see individuals with autism, restricting [the] number of providers able to assist.” (ID 643)

6%

Challenges accessing services due to lack of support, knowledge, or accommodations

(e.g., challenges navigating the services; challenges booking appointments by telephone)

6%

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“Executive dysfunction that some autistic people experience can mean that finding a psychologist with availability and expertise can take a very long time or assistance is required from a support person. It can mean sending emails about appointments or reports can take weeks or months to send, which for a neurotypical person could take 5 minutes.” (ID 873)

“It’s always phone calls to try and access services so I often just don’t.” (ID 1081)

Professionals may make assumptions or have preconceived ideas of autism, holding a deficit based view

(e.g., stereotyping; behaviours viewed as attention seeking)

“The surprise when health professionals finally see me when my disability becomes impactful because of increased stress as [they] assume that I wasn’t as disabled as I told them.” (ID 940)

6%

12

Mental health services not providing autism diagnosis or recognising autism characteristics

(e.g., challenges obtaining referral for diagnosis; lack of identification of autism characteristics)

“Finding someone to interview me and diagnose me was a long process. I know many people who are still struggling for that recognition and a way to pay for it.” (ID 72)

“Read the autobiographies [of] autistic women… they are disturbingly similar… trying and trying to get help but being repeatedly misdiagnosed…I’ve seen psychologists and psychiatrists in the last 10 years, including the last 5, NONE of whom ever raised the prospect of autism. I discovered it myself, frankly, through reading Hannah Gadsby’s autobiography. So many mental health professionals don’t see autism in women when it is staring them in the face.” (ID 1170)

6%

13

Challenges co-ordinating/accessing funds to support mental health access (beyond NDIS)

(e.g., no Medicare support; limited bulk billed sessions; difficulty co-ordinating funding options)

“Counselling is not funded through Medicare, this needs to be fixed to address access to mental health services” (ID 709)

“Not all Autistic people are working and therefore cost can be a barrier to obtaining the supports they need. NDIS is pushing Autistic participants to use a mental health plan which is only subsidised visits and not everyone can afford the out of pocket expenses.” (ID 753)

6%

14

Challenges accessing and using funds through NDIS

(e.g., support only for ASD level 2 or higher; difficult to access psychology under NDIS)

“NDIS refuse to accept that mental health problems can be related to autism (anxiety, trauma etc.) and will not fund support for same” (ID 188)

“The way NDIS funding is misappropriated by physicians and service providers. Charging the (higher) NDIS rate instead of their standard rate marginalises the client and their funding does not go as far, thus preventing them from treatments. Psychologists are extremely guilty of this.” (ID 515)

6%

15

Concerns about professional’s therapeutic skills

(e.g., lack of genuine care; discriminatory towards autistic people)

“Finding a provider that I trust and will communicate clearly and compassionately without assumptions or patronising me.” (ID 1100)

“Nothing I said was believed. All of my very real distress and suicidal thoughts were minimised and dismissed because it was thought I was lying or exaggerating for attention.” (ID 1440)

6%

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16

Trivialising or not believing someone’s autism diagnosis or their lived experiences

(e.g., not believing someone’s experience)

“Professionals making light of diagnoses during appointments “Oh, there’s the ADHD/ASD - I’ve lost you.” This has actually happened to my child.” (ID 447)

“There seems to be an urge to test the diagnosis you were given to see if it is right. If you need mental health care, what does it matter? That should come first.” (ID 495)

6%

Strategies and practices considered insufficient, inappropriate or poor quality

(e.g., reliance of medication; symptoms treated not the root cause)

“It is very medically focused. The emphasis is always on the drugs that should be prescribed.” (ID 1016)

“Mental health providers telling parents to take a behavioural approach to supporting their autistic children. This is so wrong and out of touch, and cruel.” (ID 1335)

18

Lack of autism training

(e.g., lack of regular autism training; lack of training provided by autistic people)

“Autism is not taught in the relevant schools, it is up to individual medical practitioners to proactively explore the subject.” (ID 311)

“Ableist, outdated understanding of autism - inadequate training in treating mental health conditions in autistic people” (ID 1525)

5%

19

Lack of neuro-affirming practice

(e.g., encouraged to function in neurotypical way; trained to mask)

“Non neuro-affirming practices that encourage people to be “less autistic”.” (ID 194)

“Often autistic people are seen as “broken” or in need of “fixing”. Many therapies suggest that autistic people “mask” their autistic traits which is terrible for the person’s wellbeing and long-term outcomes.” (ID 681)

5%

20

Lack of communication between sectors/professionals leading to falling between the cracks and/or frustration

(e.g., bounced between services; poor interaction between child and adult services)

“There is an appalling level of needing to “repeat your story” entering any mental health service and frequently unnecessary duplication of assessments.” (ID 354)

“Not being treated as a ‘whole person’, ie. falling in the gap between mental health services and disability services because you require both but they are not coordinated and/or pass the buck between each other” (ID 1464)

5%

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Question 2: What do you think is causing these problems?

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“Mental health professionals profess to only “treat the mental health condition” with no consideration of how neurodivergence is interwoven and part of the whole person.” (ID 354)

“The promotion of “evidence based” treatments such as CBT and ABA - these do not work for most ND clients.” (ID 852)

Impact of decisions made by the government

(e.g., government policies; government cuts; poor management of mental health services)

“Poor government policy and intervention - need clear guidance, programs to ensure service availability, subsidies costs, and better designed medical and mental healthcare systems to ensure early diagnosis by frontline medical, educational or caregiver staff (diagnosis should not rely on self-diagnosed first!).” (ID 1494)

“Gov’t agencies playing a “not my responsibility card” and yoyoIng people between NDIS, Medicare, Private Health and Public Health.” (ID 1555)

9%

Lack of knowledge, understanding, or experience of co-occurring conditions including mental health, and their interaction with autism

(e.g., lack of knowledge about, or experience with, mental health conditions, autistic burnout)

“The actions of mental health services and staff just cause more trauma to people with autism. They are incapable of handling me as one human being who has autism, two serious mental illnesses and several chronic physical illnesses.” (ID 1436)

8%

Insufficient number of, or access to, services

(e.g., lack of services/facilities; gatekeeping; distance for rural people)

“Gatekeeping in psychology training and registration artificially decreasing the number of psychologists…” (ID 724)

8%

Challenges with Medicare support

(e.g., no funding for autism assessment/therapy for people older than 15 years; out of pocket cost too high)

“Medicare being cut back to 10 again is a good example of a lack of understanding. Our conditions don’t just stop. Difficulties navigating a neurotypical world are ongoing, constant, and aren’t just going to be fixed with 10 sessions.” (ID 361)

“Medicare does not cover anywhere near the full cost with gap fees of upwards of $90/session” (ID 400)

7%

12

The system is challenging and is not designed to support the access/use of autistic people

(e.g., inflexible; access needs are not enquired about)

“Very often a service is a number for you to leave ag message for a call back. A call back usually takes two days or [no] call back. That is a big hurdle for a person with autism to access mental health service.” (ID 668)

“Lack of information and guidance about accessing mental health services - inconsistency of processes and systems for access (e.g. how to contact, how to set up appointments, how to find information)” (ID 699)

7%

13

Challenges with NDIS access, funding, and misuse of funds by professionals

(e.g., NDIS will not support mental health; NDIS planner not understanding the interaction between autism and mental health)

“NDIS will not fund psychology as they believe mental health care plans are sufficient” (ID 81)

“Privatisation of services under the NDIS model has resulted in a dearth of services [to] support complex cases. It is financially unrewarding for professionals to take on complex cases. Lack of qualified case coordinators and funding models for this, this is a very skilled and crucial role, support coordinators and “specialist support coordinators” very seldom have the necessary skills.” (ID 643)

6%

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14

Lack of research and autistic-informed care in mental health services

(e.g., evidence base is needed for women and girls; lack of co-designing services with autistic people)

“Lack of autistic input into co designing services” (ID 248)

“Nowhere near enough research into effective mental health treatment for autistics” (ID 1525)

6%

15

Approaches currently focus on medical model rather than more inclusive approaches

(e.g., medical model is a problem; interaction with society is the problem, not autism)

“A failure to consider that our body-mind experiences differ fundamentally and that this is not the problem - the interaction of the outside world and [its] people are. That therapy is enough - it’s not (but that doesn’t mean we don’t need it). Therapy won’t cure ableism any more than it will cure racism or any other social issue so long as that issue is still present and impactful on our lives.” (ID 314)

“Australia is a very compliant society and it hasn’t got a lot of space for ‘eccentricity’ so anyone who behaves/presents a little different[ly] can be made to feel like they have a problem rather than being accepted. Mental health services can see their job as helping people with autism learn to fit in more (this seems to be an unconscious but consistent thread)” (ID 897)

6%

16

Challenges around diagnosis

(e.g., late diagnosis; lack of acceptance of self-diagnosis; misdiagnosis of autism)

“There is currently a catch-up happening with older women who weren’t diagnosed as children despite their obvious autism. The waiting lists for the appropriate, trusted professionals who can diagnose [older] women are huge. The catchup period post-covid and lockdowns isn’t helping either” (ID 330)

“Professionals in support fields seem to believe that a diagnosis makes a person autistic, rather than accepting self-identification as valid.” (ID 446)

6%

17

Increase quality in training, and number of students, focusing on mental health at university and/or further education

(e.g., more clinical psychology places needed; more effective training for mental health professionals)

“Psychologists are not taught at university much about autism and are certainly not taught about affirming therapy and what therapy modalities work best for autistic people which is different for neurotypical people.” (ID 90)

“Qualification parameters for psychology [are] too restrictive to quickly increase the amount of psychologists in Australia.” (ID 987)

6%

18

Professionals may make assumptions or have preconceived ideas of autism

(e.g., autistic people are not competent; autism is a “male diagnosis”)

“Some professionals don’t think adults are autistic.” (ID 1081)

5%

19

Some autism characteristics (or associated characteristics) may make it challenging to attend/engage in therapy

(e.g., avoid social interactions; difficulty communicating mental health concerns)

“Autistics may find it difficult to be open in discussing their mental health, particularly if they are used to masking their true selves.” (ID 187)

“I’m a nervous driver, especially when travelling somewhere I don’t know, combined with already being very afraid of all things medical it makes in person visits near impossible” (ID 977)

5%

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Question 3: What do you think could prevent or reduce these problems?

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“Listening to the individual or working their psych magic to discover what’s not ok and changing course when required. Giving time and space. Being creative. I’ve learnt a lot with toys and characters and truly benefit from a psychologist who helped me by using early childhood things like a ‘circle of friends’” (ID 185)

Facilitate changes to practice to focus on strengths, neurodiversity affirming care, and skills relevant to supporting autistic people

(e.g., use social model rather than medical model; neurodiversity affirming practice)

“Stop looking at behaviour and search for unmet needs” (ID 17)

“Use of universal strategies that would enable any struggling individual to thrive - soothing environment, reduced demands, genuine relational basis, thorough skill building, individually tailored program NOT providing short term superficial and inconsistent program or supports that reinforce fear of change and experience of failure.” (ID 581)

10%

Make access and use of services easier and more autism-friendly

(e.g., alternative methods to book appointments, increased flexibility of appointments; environment)

“Autistic people need more options around the structure and timing of mental health appointments, such as shorter, more frequent appointments, or appointments that are not conducted in real time (like audio message appointments).” (ID 290)

“Ensure that clinics and such are warm, welcoming spaces that are sensitive to the sensory needs of people with autism” (ID 1004)

9%

Implement NDIS specific improvements for funding access

(e.g., more inclusive funding; automatic access to NDIS for autistic people)

“NDIS needs to accept more high functioning autistic people and ALWAYS APPROVE weekly psychology for autistic people” (ID 81)

“My son is diagnosed with ASD, PDA, OCD, PTSD, and Cluster B personality disorder. He keeps falling through bureaucratic cracks because he receives the NDIS for Autism/OCD which doesn’t cater to his mental health diagnoses” (ID 1119)

7%

Implement Medicare-specific improvements for increasing affordability of mental health care

(e.g., allow provisional psychologists to work under Medicare; Medicare funding for mental health)

“Medicare and state health service models need to move towards activity and funding models that accommodate and reward complex, integrated care” (ID 373)

“Bring back the extra sessions available with a Medicare rebate on a mental health care plan.” (ID 1324)

7%

Government reform and support of mental health sector

(e.g., legislation around language use; better legislation for protecting clients against poor treatment)

“Standards of care- legislation even around language used” (ID 56)

“A business case supported by data and financials that demonstrate the value in supporting these efforts and the impact it will have on individuals, societally and economically.” (ID 144)

6%

12

Improve communication and integration between professionals and/or sectors

(e.g., coordinated approach across NDIS, health, and education; integrated/coordinated health and disability services)

“Coordinated responses between health services - rather than everyone pushing back on other departments, resulting in individuals falling through the cracks.” (ID 163)

6%

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“Restructure health services to provide [a] trans disciplinary holistic approach. Particularly in the teen years where behaviours and social issues need to be considered not as a troubled teen but able to screen/recognise/ understand there’s something else going on here.” (ID 1301)

More co-produced research that provides evidence-based practices for neurodivergent people

(e.g., include autistic and neurodivergent people in research design; research needed into neuro-affirmative practice)

“Extensive research into ‘what works’ for autistic mental health care & suicide prevention“ (ID 166)

“Grass roots research. Get the community voice to gain an accurate understanding of what people are experiencing and what they need to live functional lives” (ID 592)

6%

Education to support general public’s understanding of autism

(e.g., address stigma; publicity drives to debunk myths and attitudes)

“The normalisation of difference in the workplace and social spaces.” (ID 940)

“…removing stigma and increasing understanding in the community would diminish the perception of some behaviours as maladaptive and would instead promote acceptance reducing the likelihood of emotional escalation that might then be considered as requiring professional input. Put accessible information in the environment!” (ID 1014)

6%

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Question 4: What is working well, or has worked well, in relation to autistic people accessing mental health services?

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Support from the family, friends, and autistic/neurodivergent community

(e.g., parent advocacy; ability to bring trusted person to appointments; social groups to meet other autistic people)

“The best thing I experienced was going to an Aspergers support group for adults on the spectrum.” (ID 406)

“Parents who can afford private services. Parents who jump up and down and push for access. Parents who advocate” (ID 773)

8%

When a professional has lived experience

(e.g., are autistic/neurodivergent, or have autistic family members).

“I am happy to say that I can now access a psychologist through my NDIS plan and the best thing is they are on the spectrum themselves so I am really comfortable talking to them, however this has not always been the case.” (ID 400)

“I happened to have an autistic psychologist once and he was the most helpful psychologist I have ever had. I had never really made any progress with counseling before and usually it made me feel worse so I would stop going. Just from my experience I would say that an autistic psychologist is better for an autistic person, than a neurotypical psychologist.” (ID 1328)

7%

The recent shift towards neurodiversity affirming and strengths-based practice, rather than relying on medical model.

(e.g., focus on the strengths of a person rather than the challenges)

“Focusing on the person’s wellbeing and how to support improved wellbeing rather than functioning like [a neurotypical]” (ID 164)

“Psychologists who write things like “Mary thrives in fast-paced environments” to describe an extremely ADHD autistic person! Such professionals can really help identify areas that the autist will thrive in long-term.” (ID 1269)

7%

A range of different approaches and modifications highlighting that no single approach is suitable for everyone

(e.g., trauma-informed; assistance animals; art therapy; social skills sessions; psychotherapy; group sessions)

“Professionals who are flexible and use alternative methods such as Equine therapy, using an assistance dog, OTs that have gym equipment for regulation during session[s]. The traditional “talking” therapy doesn’t work.” (ID 359)

“Art, music, activities in sessions - making art in therapy is helpful because it externalises the focus of therapy onto the art object. […]. Engaging senses in soothing activities also helps contain and nourish people so that they don’t feel as exposed and they can feel calmer.” (ID 897)

7%

When you develop a safe, trusting, therapeutic relationship

(e.g., feeling safe; building long-term relationship; continuity of care)

“Seeing the same person locally for some years has been really helpful to make progress, it takes months to warm up to a new person.” (ID 942)

“Once you find “your person”, the neurodivergent person feels safe and things can change.” (ID 974)

7%

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When a professional has good therapeutic skills

(e.g., compassionate, flexible, listens, patient, speaking calmly)

“Speaking calmly and patience” (ID 858)

“An empathetic person…Someone who can prompt or assist them to complete all the necessary steps instead of giving up due to depression.” (ID 1481)

5%

A range of different services, including crisis helplines, autism specific services, and community services

(e.g., Kids Helpline; community services)

“..when I accessed a free counselling service through Carer’s WA, the Counsellor specialised in parents (many Autistic) with newly diagnosed Autistic kids - helping those parents, without judgement or trying to change them. I felt heard and supported.” (ID 1251)

“Support lines in particular Lifeline when someone is in an active crisis (some better then others)” (ID 1351)

5%

Increased awareness of autism/neurodiversity and benefits of mental health support

(e.g., awareness of female presentation; prevalence of mental health conditions for autistic people)

“Realising the connect between anxiety, sensory and social autistic challenges.” (ID 163)

“Reduced stigma in community to access mental health services” (ID 705)

5%

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Appendix J-2: Umbrella review search terms

The following search terms were used for the respective databases:

Cochrane, Embase, Emerald, ERIC, Medline, PsycINFO, PubMed, Web of Science (autis* OR ASD OR ASC OR Asperger* OR pervasive developmental disorder OR PDD) AND (mental health* OR mental ill OR psych* OR comorbid* OR cooccur* OR comorbid OR co-occur* OR therap* OR practitioner* OR clinician OR telehealth OR telemental* OR telepsych* OR allied health* OR anxi* OR depress* OR trauma* OR eating disorder* OR PTSD OR mood disorder* OR bipolar OR mani* OR tic OR tics OR treatment OR inpatient OR in-patient OR outpatient) AND (systematic review* OR scoping review OR narrative review OR systematic literature review* OR systematic quantitative literature review OR evidence synthes* OR meta-analy* OR meta-regression*)

Scopus (autis* OR ASD OR ASC OR Asperger* OR “pervasive developmental disorder” OR PDD) AND (“mental health*” OR “mental ill” OR psych* OR comorbid* OR cooccur* OR comorbid OR co-occur* OR therap* OR practitioner* OR clinician OR telehealth OR telemental* OR telepsych* OR “allied health*” OR anxi* OR depress* OR trauma* OR “eating disorder*” OR PTSD OR “mood disorder*” OR bipolar OR mani* OR tic OR tics OR treatment OR inpatient OR in-patient OR outpatient) AND (“systematic review*” OR “scoping review” OR “narrative review” OR “systematic literature review*” OR “systematic quantitative literature review” OR “evidence synthes*” OR meta-analy* OR meta-regression*)

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Appendix J-3: PRISMA diagram

Records identified from: Cochrane (n = 38), Embase (n = 2,574), Emerald (n = 118), ERIC (n = 194), Medline (n = 1,704), PsycINFO (n = 1,416), PubMed (n = 1,710), Scopus (n = 3,846), Web of Science (n = 3,349)

Total records: n = 14,949

Duplicate records removed automatically by Covidence and manually before screening (n = 8,431)

Records screened (n = 6,672)

Records excluded (n = 6,588)

Full-text reviews completed (n = 84)

Studies excluded following full-text review:

• Reason 1: Did not focus on mental healthcare services (n = 34)
• Reason 2: Did not focus on autism or autism studies were not reported separately (n = 23)
• Reason 3: Review was not systematic (n = 11)
• Reason 4: Review was an umbrella, rapid or review of reviews (n = 2)

Studies included in umbrella review (n = 14)

(Template from Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D et al. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372 (71). doi: 10.1136/bmj.n71)

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Appendix J-4: References

Adams, D., & Young, K. (2021). A systematic review of the perceived barriers and facilitators to accessing psychological treatment for mental health problems in individuals on the autism spectrum. Review Journal of Autism and Developmental Disorders, 8(4), 436–453. https://doi.org/10.1007/s40489-020-00226-7

Anderson, J., Newlove-Delgado, T., & Ford, T. (2021). Annual research review: A systematic review of mental health services for emerging adults – moulding a precipice into a smooth passage. Journal of Child Psychology and Psychiatry, 63(4), 447–462. https://doi.org/10.1111/jcpp.13561

Brede, J., Cage, E., Trott, J., Palmer, L., Smith, A., Serpell, L., Mandy, W., & Russell, A. (2022). “We have to try to find a way, a clinical bridge” - autistic adults’ experience of accessing and receiving support for mental health difficulties: A systematic review and thematic meta-synthesis. Clinical Psychology Review, 93, 102131. https://doi.org/10.1016/j.cpr.2022.102131

Cameron, L., Phillips, K., Melvin, G. A., Hastings, R. P., & Gray, K. M. (2021). Psychological interventions for depression in children and young people with an intellectual disability and/or autism: Systematic review. British Journal of Psychiatry, 218(6), 305–314. https://doi.org/10.1192/bjp.2020.226

Cleary, M., West, S., Hunt, G. E., McLean, L., Hungerford, C., & Kornhaber, R. (2022). How people with autism access mental health services specifically suicide hotlines and crisis support services, and current approaches to mental health care: A scoping review. Issues in Mental Health Nursing, 43(12), 1093–1106. https://doi.org/10.1080/01612840.2022.2108529

Cleary, M., West, S., McLean, L., Hunt, G. E., Hungerford, C., & Kornhaber, R. (2022). A scoping review of autism and the way it changes the presentation of suicidal thoughts and behavior compared to the general population. Issues in Mental Health Nursing. https://doi.org/10.1080/01612840.2022.2132329

Coughlan, B., Duschinsky, R., O’Connor, M. I., & Woolgar, M. (2020). Identifying and managing care for children with autism spectrum disorders in general practice: A systematic review and narrative synthesis. Health & Social Care in the Community, 28(6), 1928–1941. https://doi.org/10.1111/hsc.13098

De Nocker, Y. L., & Toolan, C. (2021). Using Telehealth to provide interventions for children with ASD: a systematic review. Review Journal of Autism and Developmental Disorders, 10. https://doi.org/10.1007/s40489-021-00278-3

Dickson, K. S., Lind, T., Jobin, A., Kinnear, M., Lok, H., & Brookman-Frazee, L. (2021). Correction to: A systematic review of mental health interventions for ASD: Characterizing interventions, intervention adaptations, and implementation outcomes. Administration and Policy in Mental Health, 48(5), 884–908. https://doi.org/10.1007/s10488-021-01144-4

Ellison, K. S., Guidry, J., Picou, P., Adenuga, P., & Davis, T. E. (2021). Telehealth and autism prior to and in the age of COVID-19: A systematic and critical review of the last decade. Clinical Child and Family Psychology Review, 24(3), 599–630. https://doi.org/10.1007/s10567-021-00358-0

Hartley, M., Due, C., & Dorstyn, D. (2021). Barriers and facilitators to engaging individuals and families with autism spectrum disorder in mindfulness and acceptance-based therapies: a meta-synthesis. Disability and Rehabilitation, 44(17), 4590–4601. https://doi.org/10.1080/09638288.2021.1921859

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McBain, R., Kareddy, V., Cantor, J., Stein, B. D., & Yu, H. (2020). Systematic review: United States workforce for autism-related child healthcare services. Journal of the American Academy of Child and Adolescent Psychiatry, 59(1), 113–139. https://doi.org/10.1016/j.jaac.2019.04.027

Smith, K. E., Gehricke, J., Iadarola, S., Wolfe, A. E., & Kuhlthau, K. (2020). Disparities in service use among children with autism: A systematic review. Pediatrics, 145(Supplement_1), S35–S46. https://doi.org/10.1542/peds.2019-1895g

Valentine, A. Z., Hall, S., Young, E., Brown, B. J., Groom, M. J., Hollis, C., & Hall, C. L. (2021). Implementation of Telehealth services to assess, monitor, and treat neurodevelopmental disorders: Systematic review. Journal of Medical Internet Research, 23(1), e22619. https://doi.org/10.2196/22619

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Appendix J-5: Policy search strategy

Step 1

Mental Healthcare sectors were identified using the Australian Institute of Health and Welfare website: https://www.aihw.gov.au/mental-health/overview/australias-mental-health-services

Sectors were cross-checked and sub-sectors added, where relevant, using the Australian Healthcare Practitioner Regulation Agency (Ahpra) websites: https://www.ahpra.gov.au/Registration/Registers-of-Practitioners/Professions-and-Divisions.aspx

Step 2

Key documents (including policies, guidelines, and statements) relating to the national sectors and sub-sectors identified were sourced from the above websites and other Federal Department websites (where appropriate).

Key documents were searched for the terms autis* and disab* and relevant sections were extracted. Documents that did not mention autism and/or disability were also highlighted.

Step 3

The physical healthcare sectors were then searched for on each State and Territory health (as well as other relevant government department or professional body) websites.

Key documents (including policies, guidelines, and statements) were sourced. Key documents were searched for the terms autis* and disab* and relevant sections were extracted. Documents that did not mention autism and/or disability were highlighted as well as if national policies, strategies or bodies governed the respective State or Territory healthcare sectors or approaches.

Step 4

A general Google search was then conducted to ensure that key documents had not been missed during Steps 1-3.

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Appendix J-6: Wellbeing and quality of life systematic review

Systematic review

This protocol was registered with the international prospective register of systemic reviews: “Whose voice is heard, and whose is missing, in research exploring quality of life and wellbeing of autistic individuals: A systematic review” PROSPERO 2022 CRD42022385357. The terms used for the searches and the number of articles identified, screened, and included are provided at the end of Appendix G-4.

The systematic review of four academic databases identified 245 articles reporting on the quality of life and/or wellbeing of autistic people. The majority of the studies (34.7%) were conducted in the United States of America. Twenty-four (9.8%) of the 245 research studies were conducted in Australia, and were published between 2012 and 2022, with 21 (87.5%) of the studies published between 2018 and 2022.

Participants within the studies included in this review

In total, the research articles included 49,795 autistic participants, with sample size for studies ranging from 1 to 4,910 (M = 206.62; SD = 469.14). Autistic participants, or the case studies reported, ranged in age from 3 to 83 years. In 84% of the studies, gender was reported for the autistic individuals. Most studies reported gender with binary options; using this, there were proportionally more males than females (average percentage = 71% males). Twenty-two studies (9%) reported on gender diverse individuals.

Quality of included articles

The Quality Assessment with Diverse Studies (QuADS) is being used to appraise the methodology and quality of the studies. The QuADS includes 13 criteria scored on a scale (0 = no mention to 3 = explicit/detailed), with a maximum score of 39. To date, the articles appraised ranged in quality with QuADS scores between 13 to 35, with an average score of 27, suggesting overall reasonable quality.

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Topics of included studies

The focus of this review was to identify, in research that reports on autistic quality of life and or/wellbeing, who is reporting the information, how it is measured, and who is being discussed.

In the studies identified, the quality of life and/or wellbeing of autistic people was reported by autistic people (104 studies), autistic people and others (i.e., parent/caregivers, professionals, support workers; 56 studies), and others (84 studies). Over 80% of the studies relied on questionnaires/surveys to measure autistic people’s quality of life and/or wellbeing. The key findings for each topic are discussed in Table 1.

Research gaps

This review identified a number of research gaps, which are described for each topic in Table 1. In brief, autistic people were rarely asked what they viewed as quality of life and/or wellbeing. Very few studies included the voice of autistic people who have an intellectual impairment, or autistic people who identify as nonspeaking or who use alternative communication. The quality of life and/or wellbeing of autistic people was assessed using measures developed for non-autistic populations and findings were reported on normative data. The impact of co-occurring conditions on a person’s quality of life was rarely considered.

In addition, other research gaps were noted by the authors of this report. These include that it is not known what autistic people identify as having a good quality of life and/or wellbeing and what influences them in achieving this. The autistic community was rarely consulted in the research process.

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Table 1: Quality of life and wellbeing of autistic individuals with complex support or communication needs systematic review

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Search terms

Note. Terms are written in database code. Terms written in light blue were identified by autistic individuals.

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FOI 24/25-1567

PRISMA diagram

Records identified from: Databases (n = 61,140)

• Scopus (n = 29,689)
• ERIC Proquest (n = 4,744)
• PsycINFO (n = 8,038)
• Medline via Ovid (n = 18,669)

Records removed before screening: Duplicate records removed

• Endnote (n = 18,796) Duplicate records removed
• Covidence (n = 5,886)

Records screened (title and abstract) (n = 36,459)

Records excluded (n = 34,910)

Full-text articles identified for retrieval (1,523) [Note: source text shows 21.323 or 1,549 in boxes, preserving exact text or structured representation]

Full-text articles not retrieved (n = 20)

Full-text articles assessed for eligibility (n = 1,529)

Studies text articles excluded:

• Did not report on autistic individuals (n = 822)
• Autistic individuals not reported separately (n = 271)
• Not in English (n = 122)
• Not original research (n = 40)
• Does not report QoL and/or well-being (n = 23)
• Intervention/treatment study (n = 7)

Studies included in umbrella review (n = 12)

(Template from Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D et al. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372 (71). doi: 10.1136/bmj.n71)

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Appendix K: Physical health services

Appendix K-1: Content analysis categories

Question 1: What are three problems that autistic people experience when accessing, or trying to access, physical health care services?

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Question 2: What do you think is causing these problems?

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Question 3: What do you think could prevent or reduce these problems?

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Question 4: What is working well, or has worked well, in relation to autistic people accessing mental health services?

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Appendix K-2: Umbrella review search terms

The following search terms were used for the respective databases:

Cochrane, Embase, Emerald, ERIC, Medline, PsycINFO, PubMed, Web of Science (autis* OR ASD OR ASC OR Asperger* OR pervasive developmental disorder OR PDD) AND (healthcare OR health care OR physical health* OR medical* OR health system OR primary care OR secondary care OR tertiary care OR hospital* OR ward OR clinic OR general practi* OR GP OR doctor OR nurs* OR surgeon* OR health professional* OR practitioner* OR paediatrician* OR physician* OR medical staff OR dent* OR medical OR emergency room* OR casualty OR emergency department OR emergency service OR emergency medicine OR paramed* OR health service* OR telehealth OR telemedicine OR allied health* OR therapist* OR NDIS OR National Disability Insurance* OR rehab* OR occupational therap* OR speech therap* OR physical therapy* OR speech patholog*) AND (systematic review* OR scoping review OR narrative review OR systematic literature review* OR systematic quantitative literature review OR evidence synthes* OR meta-analy* OR meta-regression*)

Scopus (autis* OR ASD OR ASC OR Asperger* OR “pervasive developmental disorder” OR PDD) AND (healthcare OR “health care” OR “physical health*” OR medical* OR “health system” OR “primary care” OR “secondary care” OR “tertiary care” OR hospital* OR ward OR clinic OR “general practi*” OR GP OR doctor OR nurs* OR surgeon* OR “health professional*” OR practitioner* OR paediatrician* OR physician* OR “medical staff” OR dent* OR medical OR “emergency room*” OR casualty OR “emergency department” OR “emergency service” OR “emergency medicine” OR paramed* OR “health service*” OR telehealth OR telemedicine OR “allied health*” OR therapist* OR NDIS OR “National Disability Insurance*” OR rehab* OR “occupational therap*” OR “speech therap*” OR “physical therapy*” OR “speech patholog*”) AND (“systematic review*” OR “scoping review” OR “narrative review” OR “systematic literature review*” OR “systematic quantitative literature review” OR “evidence synthes*” OR meta-analy* OR meta-regression*)

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Appendix K-3: PRISMA diagram

Records identified from: Cochrane (n = 29), Embase (n = 60), Emerald (n = 2), ERIC (n = 36), Medline (n = 599), PsycINFO (n = 454), PubMed (n = 585), Scopus (n = 1,621), Web of Science (n = 1,453)

Total records: n = 4,839

Duplicate records removed automatically by Covidence and manually before screening (n = 2,195)

Records screened (n = 2,644)

Records excluded (n = 2,567)

Full-text reviews completed (n = 76)

Studies excluded following full-text review:

• Reason 1: Did not focus on physical healthcare services (n = 27)
• Reason 2: Did not focus on autism or autism studies were not reported separately (n = 12)
• Reason 3: Review was not systematic (n = 3)

Studies included in umbrella review (n = 34)

(Template from Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D et al. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ, 372 (71). doi: 10.1136/bmj.n71)

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Appendix K-4: References

AlHumaid, J. (2022). Dental experiences related to oral care of children with autism spectrum disorders in Saudi Arabia: A literature review. The Saudi Dental Journal, 34(1), 1–10. https://doi.org/10.1016/j.sdentj.2021.09.023

Bishop-Fitzpatrick, L., & Kind, A. J. (2017). A scoping review of health disparities in autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(11), 3380–3391. https://doi.org/10.1007/s10803-017-3251-9

Boshoff, K., Bowen-Salter, H., Gibbs, D., Phillips, R. L., Porter, L. A., & Wiles, L. (2021). A meta- and synthesis of how parents of children with autism describe their experience of accessing and using routine healthcare services for their children. Health & Social Care in the Community, 29(6), 1668–1682. https://doi.org/10.1111/hsc.13369

Burke, S. L., Wagner, E. R., Marolda, H., Quintana, J. E., & Maddux, M. (2019). Gap analysis of service needs for adults with neurodevelopmental disorders. Journal of Intellectual Disabilities, 23(1), 97–116. https://doi.org/10.1177/1744629517726209

Calleja, S., Islam, F. M. A., Kingsley, J., & McDonald, R. (2020). Healthcare access for autistic adults. Medicine, 99(29):e20899. https://doi.org/10.1097/md.0000000000020899

Casagrande, K., & Ingersoll, B. (2021). Improving service access in ASD: A systematic review of family empowerment interventions for children with special healthcare needs. Review Journal of Autism and Developmental Disorders, 8(2), 170–185. https://doi.org/10.1007/s40489-020-00208-9

Clarke, L., & Fung, L. K. (2022). The impact of autism-related training programs on physician knowledge, self-efficacy, and practice behavior: A systematic review. Autism, 26(7), 1626–1640. https://doi.org/10.1177/13623613221102016

Cooke, E., Smith, V., & Brenner, M. (2020). Parents’ experiences of accessing respite care for children with autism spectrum disorder (ASD) at the acute and primary care interface: A systematic review. BMC Pediatrics, 20(1). https://doi.org/10.1186/s12887-020-02045-5

Corden, K., Brewer, R., & Cage, E. (2021). A systematic review of healthcare professionals’ knowledge, self-efficacy and attitudes towards working with autistic people. Review Journal of Autism and Developmental Disorders, 9(3), 386–399. https://doi.org/10.1007/s40489-021-00263-w

Coughlan, B., Duschinsky, R., O’Connor, M. I., & Woolgar, M. (2020b). Identifying and managing care for children with autism spectrum disorders in general practice: A systematic review and narrative synthesis. Health & Social Care in the Community, 28(6), 1928–1941. https://doi.org/10.1111/hsc.13098

Dallman, A. R., Artis, J., Watson, L. R., & Wright, S. T. (2021). Systematic review of disparities and differences in the access and use of allied health services amongst children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 51(4), 1316–1330. https://doi.org/10.1007/s10803-020-04608-y

Erwin, J., Paisi, M., Neill, S., Burns, L., Vassallo, I., Nelder, A., Facenfield, J., Devalia, U., Vassallo, T., & Witton, R. (2022). Factors influencing oral health behaviours, access and delivery of dental care

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for autistic children and adolescents: A mixed-methods systematic review. Health Expectations, 25(4), 1269–1318. https://doi.org/10.1111/hex.13544

Gilmore, D. W., Krantz, M., Weaver, L. L., & Hand, B. N. (2021). Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis. Autism, 26(2), 317–331. https://doi.org/10.1177/13623613211060906

Knutsen, J. F., Wolfe, A. E., Burke, B. L., Hepburn, S., Lindgren, S. D., & Coury, D. L. (2016). A systematic review of telemedicine in autism spectrum disorders. Review Journal of Autism and Developmental Disorders, 3(4), 330–344. https://doi.org/10.1007/s40489-016-0086-9

Koski, S., Gabriels, R. L., & Beresford, C. (2016). Interventions for paediatric surgery patients with comorbid autism spectrum disorder: A systematic literature review. Archives of Disease in Childhood, 101(12), 1090–1094. https://doi.org/10.1136/archdischild-2016-310814

Kouo, J. L., & Kouo, T. (2021). A scoping review of targeted interventions and training to facilitate medical encounters for school-aged patients with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 51(8), 2829–2851. https://doi.org/10.1007/s10803-020-04716-9

Lytle, S., Hunt, A. J., Moratschek, S., Hall-Mennes, M., & Sajatovic, M. (2018). Youth with autism spectrum disorder in the emergency department. The Journal of Clinical Psychiatry, 79(3). https://doi.org/10.4088/jcp.17r11506

Mason, D., Ingham, B., Urbanowicz, A., Michael, C., Birtles, H., Woodbury-Smith, M., Brown, T., James, I., Scarlett, C., Nicolaidis, C., & Parr, J. R. (2019). A systematic review of what barriers and facilitators prevent and enable physical healthcare services access for autistic adults. Journal of Autism and Developmental Disorders, 49(8), 3387–3400. https://doi.org/10.1007/s10803-019-04049-2

Matin, B. K., Byford, S., Soltani, S., Karyani, A. K., Atafar, Z., Zereshki, E., Soofi, M., Rezaei, S., Rakhshan, S. T., & Jahangiri, P. (2022). Contributing factors to healthcare costs in individuals with autism spectrum disorder: A systematic review. BMC Health Services Research, 22(1). https://doi.org/10.1186/s12913-022-07932-4

McBain, R., Kareddy, V., Cantor, J., Stein, B. D., & Yu, H. (2020). Systematic review: United States workforce for autism-related child healthcare services. Journal of the American Academy of Child and Adolescent Psychiatry, 59(1), 113–139. https://doi.org/10.1016/j.jaac.2019.04.027

McCormack, G., Dillon, A. K., Healy, O., Walsh, C., & Lydon, S. (2020). Primary care physicians’ knowledge of autism and evidence-based interventions for autism: A systematic review. Review Journal of Autism and Developmental Disorders, 7(3), 226–241. https://doi.org/10.1007/s40489-019-00189-4

McLean, K. J., Hoekstra, A. M., & Bishop-Fitzpatrick, L. (2021). United States Medicaid home and community-based services for people with intellectual and developmental disabilities: A scoping review. Journal of Applied Research in Intellectual Disabilities, 34(3), 684–694. https://doi.org/10.1111/jar.12837

Morris, R., Greenblatt, A., & Saini, M. (2019). Healthcare providers’ experiences with autism: A scoping review. Journal of Autism and Developmental Disorders, 49(6), 2374–2388. https://doi.org/10.1007/s10803-019-03912-6

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Morris, R., Greenblatt, A., & Saini, M. (2021). Working beyond capacity: A qualitative review of research on healthcare providers’ experiences with autistic individuals. Review Journal of Autism and Developmental Disorders, 10(1), 158–168. https://doi.org/10.1007/s40489-021-00283-6

Sadatsafavi, H., Vanable, L., DeGuzman, P. B., & Sochor, M. R. (2022). Sensory-friendly emergency department visit for patients with autism spectrum disorder—A scoping review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-022-00318-6

Samuel, P., Yew, R. Y., Hooley, M., Hickey, M., & Stokes, M. A. (2021). Sensory challenges experienced by autistic women during pregnancy and childbirth: A systematic review. Archives of Gynecology and Obstetrics, 305(2), 299–311. https://doi.org/10.1007/s00404-021-06109-4

Smith, K. E., Gehricke, J., Iadarola, S., Wolfe, A. E., & Kuhlthau, K. (2020b). Disparities in service use among children with autism: A systematic review. Pediatrics, 145(Supplement_1), S35–S46. https://doi.org/10.1542/peds.2019-1895g

Straus, J., Coburn, S., Maskell, S., Pappagianopoulos, J. E., & Cantrell, K. (2019). Medical encounters for youth with autism spectrum disorder: A comprehensive review of environmental considerations and interventions. Clinical Medicine Insights, 13, 1179556519842816. https://doi.org/10.1177/1179556519842816

Sutherland, R., Trembath, D., & Roberts, J. (2018). Telehealth and autism: A systematic search and review of the literature. International Journal of Speech-Language Pathology, 20(3), 324–336. https://doi.org/10.1080/17549507.2018.1465123

Tregnago, M. K., & Cheak-Zamora, N. (2012). Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States. Research in Autism Spectrum Disorders, 6(3), 1023–1031. https://doi.org/10.1016/j.rasd.2012.01.005

Walsh, C., Lydon, S., O’Dowd, E., & O’Connor, P. J. (2020). Barriers to healthcare for persons with autism: A systematic review of the literature and development of a taxonomy. Developmental Neurorehabilitation, 23(7), 413–430. https://doi.org/10.1080/17518423.2020.1716868

Walsh, C., O’Connor, P. J., Walsh, E., & Lydon, S. (2021). A systematic review of interventions to improve healthcare experiences and access in autism. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-021-00279-2

Williamson, H. J., Contreras, G. M., Rodriguez, E., Smith, J. A., & Perkins, E. (2017). Health care access for adults with intellectual and developmental disabilities: A scoping review. OTJR-Occupation Participation and Health, 37(4), 227–236. https://doi.org/10.1177/1539449217714148

Wilson, S., & Peterson, C. C. (2018). Medical care experiences of children with autism and their parents: A scoping review. Child Care Health and Development, 44(6), 807–817. https://doi.org/10.1111/cch.12611

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Appendix K-5: Policy search strategy

Step 1

Physical Healthcare sectors were identified using the Australian Federal Department of Health and Aged Care website: https://www.health.gov.au/about-us/the-australian-health-system

Sectors were cross-checked and sub-sectors added, where relevant, using the Australian Institute of Health and Welfare (AIHW) and Australian Healthcare Practitioner Regulation Agency (Ahpra) websites: https://www.aihw.gov.au/reports/australias-health/health-system-overview and https://www.ahpra.gov.au/Registration/Registers-of-Practitioners/Professions-and-Divisions.aspx

Step 2

Key documents (including policies, guidelines, and statements) relating to the national sectors and sub-sectors identified were sourced from the above websites and other Federal Department websites (where appropriate).

Key documents were searched for the terms autis* and disab* and relevant sections were extracted. Documents that did not mention autism and/or disability were also highlighted.

Step 3

The physical healthcare sectors were then searched for on each State and Territory health (as well as other relevant government department or professional body) websites.

Key documents (including policies, guidelines, and statements) were sourced. Key documents were searched for the terms autis* and disab* and relevant sections were extracted. Documents that did not mention autism and/or disability were highlighted as well as if national policies, strategies or bodies governed the respective State or Territory healthcare sectors or approaches.

A general Google search was then conducted to ensure that key documents had not been missed during Steps 1-3.

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Our values

• Inclusion Valuing lived experience
• Innovation Solutions for long term challenges
• Evidence Truth in practice
• Independence Integrity through autonomy
• Cooperation Capturing opportunities together

Independent national source of evidence for best practice

autismcrc.com.au

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DOCUMENT 1.2.3

Research evidence, policy and landscape mapping to inform the National Autism Strategy

Final Report

Dawn Adams, Sonya Girdler, Stephanie Malone, Wenn Lawson, Annette Carroll, Ocean Colville, Kate Simpson, Emily D’Arcy, Emily Jackson, Lydia Timms, Valeska Berg, Patrice Whitehorne-Smith, Tanya Picen, Bahareh Afsharnejad

June 2023

autismcrc.com.au

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Research evidence, policy and landscape mapping to inform the National Autism Strategy

Dawn Adams Griffith University

Sonya Girdler Curtin University

Stephanie Malone Griffith University

Wenn Lawson Independent Researcher

Annette Carroll Griffith University

Ocean Colville Griffith University

Kate Simpson Griffith University

Emily D’Arcy Curtin University

Emily Jackson Curtin University

Lydia Timms Curtin University

Valeska Berg Curtin University

Patrice Whitehorne-Smith Curtin University

Tanya Picen Curtin University

Bahareh Afsharnejad Curtin University

ISBN: 978-1-922365-55-2

Citation: Adams, D., Girdler, S., Malone, S., Lawson, W., Carroll, A., Colville, O., Simpson, K., D’Arcy, E., Jackson, E., Timms., L., Berg, V., Whitehorne-Smith, P, Picen, T., & Afsharnejad, B. (2023). Research evidence, policy and landscape mapping to inform the National Autism Strategy: Final report. Brisbane: Autism CRC.

Cover artwork: Jasmin Pradha, Spiral of diversity, 2018 Autism CRC Digital Art Celebration entry.

“My image is made up of words that describe diversity, what it means and how important it is. The words all make a spiral shape across the page.”

Copyright and disclaimer

The information contained in this report has been drafted by Autism CRC to assist knowledge and discussion to support the development of the National Autism Strategy. Copyright in this report and all the information it contains vests in Autism CRC.

You should seek independent professional, technical, or legal (as required) advice before acting on any opinion, advice, or information contained in this report. Autism CRC makes no warranties or assurances with respect to this report. Autism CRC and all persons associated with it exclude all liability (including liability for negligence) in relation to any opinion, advice, or information contained in this report or for any consequences arising from the use of such opinion, advice, or information.

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Acknowledgements

The authors acknowledge the financial support of Autism CRC. Staff and non-staff in kind were provided by Autism CRC members and affiliates – Griffith University, Curtin University and Wenn Lawson.

Autism CRC

Autism CRC is the independent national source of evidence for best practice in relation to autism across the lifespan and the spectrum.

We provide the national capacity to develop and deliver evidence-based outcomes through our unique collaboration with autistic people, families, professionals, services providers, researchers, and government. Together, we are addressing agreed needs and co-producing outputs with these stakeholders for the benefit of the community.

Autism CRC was established in 2013 as the world’s first national, cooperative research effort focused on autism under the Australian Government’s Cooperative Research Centres (CRC) Program. We receive funding from a number of sources, including the Australian Government. Autism CRC is no longer part of, or associated with, the CRC Program.

autismcrc.com.au

A note on terminology

We recognise that when referring to individuals on the autism spectrum, there is no one term that suits all people. In our published material and other work, we use the terms ‘autistic person’, ‘person on the autism spectrum’ or ‘person on the spectrum’. The term ‘autistic person’ uses identity first language, which reflects the belief that being autistic is a core part of a person’s identity. Autism Spectrum Disorder (ASD) is diagnostic terminology used by the healthcare sector and is used in the context of a person being ‘diagnosed with Autism Spectrum Disorder’.

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Contents

• Executive Summary…………………………………………………………………………………………………………1
• 1. Introduction……………………………………………………………………………………………………………. 10
  • 1.1 Background……………………………………………………………………………………………………………………………………………..10
  • 1.2 Aims………………………………………………………………………………………………………………………………………………………….10
• 2. What we did……………………………………………………………………………………………………………. 11
  • 2.1 General methods……………………………………………………………………………………………………………………………………..11
    • 2.1.1 The “1,000 Insights” community views survey…………………………………………………………………………11
    • 2.1.2 Umbrella review………………………………………………………………………………………………………………………..14
    • 2.1.3 Policy review……………………………………………………………………………………………………………………………..15
• 3. What we found………………………………………………………………………………………………………. 16
  • 3.1 Diagnosis…………………………………………………………………………………………………………………………………………………16
    • 3.1.1 The “1,000” Insights” community views survey………………………………………………………………………16
    • 3.1.2 Umbrella review……………………………………………………………………………………………………………………….35
    • 3.1.3 Policy and guideline review…………………………………………………………………………………………………….39
    • 3.1.4 Community views, research evidence, and policy/guideline gap analysis ………………………….41
  • 3.2 Early intervention and support………………………………………………………………………………………………………………46
    • 3.2.1 The “1000 Insights” community views survey………………………………………………………………………..46
    • 3.2.2 Umbrella review: Early intervention and support services……………………………………………………63
    • 3.2.3 Policy and guideline review……………………………………………………………………………………………………. 67
    • 3.2.4 Community views, research evidence, and policy/guideline alignment and gap analysis…70
  • 3.3 Education……………………………………………………………………………………………………………………………………………….. 75
    • 3.3.1 The “1,000 Insights” community views survey………………………………………………………………………. 75
    • 3.3.2 Umbrella review: Primary and secondary education………………………………………………………….. 100
    • 3.3.3 Policy and guideline review: Primary and secondary education…………………………………………104
    • 3.3.4 Research evidence and policy/guideline gap analysis…………………………………………………………130
    • 3.3.5 Umbrella review: Postsecondary education………………………………………………………………………….130
    • 3.3.6 Policy and guideline review: Postsecondary education……………………………………………………….135
    • 3.3.7 Community views, research evidence, and policy/guideline alignment and gap analysis..138
  • 3.4 Employment…………………………………………………………………………………………………………………………………………..145
    • 3.4.1 The “1,000 Insights” community views survey………………………………………………………………………145
    • 3.4.2 Umbrella review………………………………………………………………………………………………………………………163
    • 3.4.3 Policy and guideline review……………………………………………………………………………………………………170
    • 3.4.4 Community views, research evidence, and policy/guideline alignment and gap analysis..174
  • 3.5 Housing and independent living………………………………………………………………………………………………………….179
    • 3.5.1 The “1,000 Insights” community views survey………………………………………………………………………179
    • 3.5.2 Umbrella review: Housing design………………………………………………………………………………………….197

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• 3.5.3 Policy and guideline review…………………………………………………………………………………………………. 203
• 3.5.4 Community views, research evidence, and policy/guideline alignment and gap analysis.207
• 3.5.5 Umbrella review: Independent living ………………………………………………………………………………….. 212
• 3.6 Justice…………………………………………………………………………………………………………………………………………………….217
  • 3.6.1 The “1,000 Insights” community views survey………………………………………………………………………217
  • 3.6.2 Umbrella review……………………………………………………………………………………………………………………..232
  • 3.6.3 Community views, research evidence, and policy/guideline alignment and gap analysis .251
• 3.7 Mental health services………………………………………………………………………………………………………………………… 258
  • 3.7.1 The “1,000 Insights” community views survey……………………………………………………………………. 258
  • 3.7.2 Umbrella review……………………………………………………………………………………………………………….. 283
  • 3.7.3 Policy and guideline review…………………………………………………………………………………………………. 288
  • 3.7.4 Additional information from literature reviews within other autism crc projects………………..301
  • 3.7.5 Community views, research evidence, and policy/guideline alignment and gap analysis .301
• 3.8 Physical health services……………………………………………………………………………………………………………….. 307
  • 3.8.1 The “1,000 Insights” community views survey……………………………………………………………………..307
  • 3.8.2 Umbrella review……………………………………………………………………………………………………………….. 326
  • 3.8.3 Policy and guideline review…………………………………………………………………………………………………..333
  • 3.8.4 Community views, research evidence, and policy/guideline alignment and gap analysis.343
• 4. Summary and conclusion…………………………………………………………………………………….. 350
  • 4.1 Summary of identified needs across domains; areas for action or improvement………………………….. 350
  • 4.2 Limitations and considerations of the findings…………………………………………………………………………………..353
  • 4.3 Conclusion…………………………………………………………………………………………………………………………………………….354

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List of tables

• Table 1: Community views survey respondent demographics ……………………………………………………………………… 13
• Table 2: 10 most frequently reported problems experienced by autistic people and their family/carers in relation to diagnosis…………………………………………………………………………………………………………………………………………….18
• Table 3: 13 most frequently reported factors causing problems experienced by autistic people and their family/carers in relation to diagnosis………………………………………………………………………………………………………………………………..23
• Table 4: 9 most frequently reported factors that could prevent or reduce the problems experienced by autistic people and their family/carers in relation to diagnosis…………………………………………………………………………29
• Table 5: 6 most frequently reported factors that are working well, or have worked well, in relation to autistic people and their family/carers accessing diagnosis…………………………………………………………………………….. 33
• Table 6: Umbrella review findings for diagnosis………………………………………………………………………………………………..36
• Table 7: Policy and guideline review findings for diagnosis…………………………………………………………………….. 39
• Table 8: 10 most frequently reported problems experienced by autistic people and their family/carers in relation to early intervention and support services……………………………………………………………………………………………48
• Table 9: 10 most frequently reported factors causing the problems experienced by autistic people and their family/carers in relation to early intervention and support services………………………………………………………………….52
• Table 10: 10 most frequently reported factors that could prevent or reduce problems experienced by autistic people and their family/carers in relation to early intervention and support services…………………………56
• Table 11: 10 most frequently reported factors that are working well, or have worked well, in relation to autistic people and their family/carers accessing early intervention and support services……………………………..60
• Table 12: Umbrella review findings for early intervention and supports for autistic children…………………………..65
• Table 13: Policy review findings for early intervention and supports for autistic children………………………….. 68
• Table 14: 10 most frequently reported problems experienced by autistic people in relation to education………77
• Table 15: 10 most frequently reported factors causing the problems reported by autistic people in relation to education………………………………………………………………………………………………………………………………………………………… 83
• Table 16: 10 most frequently reported factors that could prevent or reduce problems experienced by autistic people in relation to education…………………………………………………………………………………………………………………………….90
• Table 17: 10 most frequently reported factors that are working well, or have worked well, for autistic people in education…………………………………………………………………………………………………………………………………………………………95
• Table 18: Umbrella review findings for primary and secondary education……………………………………………………… 102
• Table 19: Policy and guideline review findings for primary and secondary education………………………….. 107
• Table 20: Umbrella review findings for postsecondary education……………………………………………………………………133
• Table 21: Policy and guideline review findings for postsecondary education………………………………………… 136
• Table 22: 10 most frequently reported problems experienced by autistic people in relation to employment..147
• Table 23: 13 most frequently reported factors causing the problems experienced by autistic people in relation to employment……………………………………………………………………………………………………………………………………….151
• Table 24: 11 most frequently reported factors that could prevent or reduce the problems experienced by autistic people in relation to employment…………………………………………………………………………………………………………155
• Table 25: 12 most frequently reported factors that are working well, or have worked well, in relation to autistic people accessing employment……………………………………………………………………………………………………………. 160
• Table 26: Umbrella review findings for employment…………………………………………………………………………………………165
• Table 27: Policy and guideline review findings for employment……………………………………………………………………….171
• Table 28: 11 most frequently reported problems experienced by autistic people in relation to housing………. 180

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• Table 29: 14 most frequently reported factors causing the problems experienced by autistic people in relation to housing……………………………………………………………………………………………………………………………………………..185
• Table 30: 10 most frequently reported factors that could prevent or reduce the problems experienced by autistic people in relation to housing……………………………………………………………………………………………………………………………… 190
• Table 31: 11 most frequently reported factors that are working well, or have worked well, for autistic people in relation to housing………………………………………………………………………………………………………………………………………….194
• Table 32: Umbrella review findings for housing design……………………………………………………………………………………199
• Table 33: Policy and guideline review findings for autism and housing………………………………………………………. 204
• Table 34: Umbrella review findings for independent living…………………………………………………………………….. 214
• Table 35: 9 most frequently reported problems experienced by autistic people in relation to the justice system…………………………………………………………………………………………………………………………………………………………………219
• Table 36: 8 most frequently reported factors causing the problems experienced by autistic people in relation to the justice system…………………………………………………………………………………………………………………………………………..223
• Table 37: 8 most commonly reported factors that could prevent or reduce the problems experienced by autistic people in relation to the justice system……………………………………………………………………………………………….226
• Table 38: 5 most frequently reported factors that are working well, or have worked well, in relation to autistic people accessing the justice system………………………………………………………………………………………………………………….230
• Table 39: Umbrella review findings for justice………………………………………………………………………………………………….234 Policy and guideline review………………………………………………………………………………………………………………………………239
• Table 40: Policy and guideline review findings for justice………………………………………………………………………………..241
• Table 41: 10 most frequently reported problems experienced by autistic people in relation to using or trying to access mental health services…………………………………………………………………………………………………………………….. 260
• Table 42: 10 most frequently reported factors causing the problems experienced by autistic people in relation to using or trying to access mental health services……………………………………………………………………………267
• Table 43: 10 most frequently reported factors that could prevent or reduce the problems experienced by autistic people in relation to mental health services………………………………………………………………………………………..272
• Table 44: 10 most frequently reported factors that are working well, or have worked well, in relation to autistic people using or trying to access mental health services…………………………………………………………………….278
• Table 45: Umbrella review findings for mental health services…………………………………………………………………….. 285
• Table 46: Policy and guideline review findings for mental health services………………………………………………………291
• Table 47: 10 most frequently reported problems experienced by autistic people in relation to physical health services…………………………………………………………………………………………………………………………………………………..309
• Table 48: 10 most frequently reported factors causing the problems experienced by autistic people in relation to accessing physical health services…………………………………………………………………………………………………..313
• Table 49: 10 most frequently reported factors that could prevent or reduce the problems experienced by autistic people in relation to accessing physical health services……………………………………………………………………..317
• Table 50: 10 most frequently reported factors that are working well, or have worked well, in relation to autistic people accessing physical health services………………………………………………………………………………………….322
• Table 51: Umbrella review findings for physical health services………………………………………………………. 328
• Table 52: Policy and guideline review findings for physical health services………………………………………… 335
• Table 53: Needs (i.e. areas for action and improvement) identified in the gap analysis across each of the eight domainsThe other areas for action and improvement were:……………………………………………………………………..352

Page 278 of 911 vi | Research evidence, policy and landscape mapping to inform the National Autism Strategy

Executive Summary

Why we did this work

The Australian Government has committed to the co-design and development of a National Autism Strategy (the Strategy) that is grounded in evidence and informed by the experiences of autistic people, their families and carers, and those who work to support them. This report describes the findings of the community views survey, research evidence review, and policy review relating to key service domains to be addressed in the National Autism Strategy. These key service domains are: diagnosis; early intervention and support; education; employment; housing; justice; and health and mental health services.

It is important that the community views, research findings, and policy review for each section are considered in combination and in their entirety; no single aspect should be considered in isolation.

What we did

The service domains were divided between Griffith University and Curtin University, aligning areas with the research expertise of each team.

• Curtin University, led by Professor Sonya Girder: Diagnosis, Early intervention and support, Education (post-secondary education and education systems), Employment and Housing
• Griffith University, led by Professor Dawn Adams: Health and mental health services (separated into two sections), Justice (including legal, policing, judicial, and custodial services), and Education (primary and secondary school).

For each service domain, three forms of research were undertaken to support a broad understanding. This consisted of:

i) the “1,000 insights” survey; an online survey gaining perspectives of over 1,000 members of the autistic community, their families/carers, and people who work with them; ii) an umbrella review summarising research findings; and iii) a policy review summarising relevant federal, national, and state/territory level policy.

The “1,000 insights” community views survey was co-designed with the research team, autistic advisors, and Autism CRC staff. Within each service domain, people were asked four questions:

• What are three problems that autistic people experience within ?
• What do you think is causing these problems?
• What do you think could prevent or reduce these problems?
• What is working well, or has worked well, for autistic people within ?

There were 1,018 responses to the community views survey. Almost half (42%) of the respondents were autistic; over half (56%) were parents, family members, or caregivers of autistic people. Respondents were also educational professionals (19%), allied health professionals (18%), mental health professionals (10%), and researchers (10%).

Research evidence, policy and landscape mapping Page 279 of 911 to inform the National Autism Strategy 1 | Executive Summary

The research review used an umbrella review method to identify all the published systematic reviews of published articles related to the specific domain. Across the eight domains, over 16,000 systematic reviews were screened to identify the 185 systematic reviews relevant the service domains within this report. Collectively these report on over 700 research studies and over 2,500,000 participants.

The policy review identified publicly available policies and guidelines relating to autism and/or broader disability. Relevant information was extracted and synthesised. Across the domains, 120 policies and guidelines were reviewed and synthesised.

The findings of each of the three forms of research (community views survey, research reviews and policy reviews) were combined to undertake a gap analysis. The first stage of the gap analysis provided a description of the current state (predominantly based upon the community views analysis but also some findings of the research review and policy review). The second stage then provides a description of an improved future state (based upon community views around what is working well, policy review, and some research review findings. The gap analysis process is depicted in Figure 1.

Figure 1: Gap analysis: Current to improved future state

Research evidence, policy and landscape mapping to inform the National Autism Strategy

2 | Executive Summary

What we found

A brief summary of the key findings for each service domain is presented below. Whilst each specific domain is presented separately in this report, the gap analysis identified a number of needs (i.e., areas for action and improvement) that were present across multiple domains. The key or overarching areas for change or improvement that cut across multiple domains are summarised in section 1.3.9.

Diagnosis

Survey respondents (545 respondents, including 237 autistic people) reported that difficulties are experienced by autistic people at all stages of the diagnosis process (before, during and after). The diagnostic process is long, confusing, deficit-based, and expensive, and there is a lack of professionals who follow the National Guideline for the Assessment and Diagnosis of Autism or those who use a neurodiversity affirming approach. Challenges with diagnosis were echoed in the research review.

The research review considered a range of other relevant topics including recommendations for clinicians, the use of clinical tools and processes to support a timely diagnosis of autism, and considerations to include in the assessment and diagnosis of autism.

Supporting the research review findings, the key policy (National Guideline for the Assessment and Diagnosis of Autism, currently being updated) provides specific guidelines on how to conduct a holistic, neurodiversity affirming and evidence-based assessment and diagnosis of autism across the lifespan, including the need to consider other important factors (e.g., age, intellectual capacity).

The gap analysis highlighted the clear need for improvements across the diagnosis process, including increasing the number of professionals with knowledge of autism able to diagnose, reducing financial barriers to diagnosis, ensuring a clear and equitable approach to diagnosis, and using a neurodiversity affirming approach. Ongoing research and continual evaluation is required to ensure diagnoses are made with the best available tools and processes, and to understand the diagnostic experiences and priorities of autistic people and their supporters, particularly those from marginalised groups.

Early intervention and support

The community views survey (completed by 350 respondents, including 115 autistic people) indicated that autistic people experience a number of challenges when trying to access early intervention and supports. These challenges include: a lack of timely access to support services linked to long waitlists, high costs of accessing services, lack of quality health professionals and trained staff who are competent and have an understanding of neurodivergence.

The research review indicated that a number of early intervention approaches have positive effects for autistic children, such as behavioural interventions, naturalistic developmental behavioural intervention, technology-based interventions, and cognitive behaviour intervention. However, most of the research literature does not consider the effect of the intervention on caregivers, the influence that the method of delivery had on the outcomes, or the influence of the individual characteristics of the child (e.g., age, co-occurring conditions).

Research evidence, policy and landscape mapping to inform the National Autism Strategy

3 | Executive Summary

The key policy related to early intervention and support is the National Guideline for the Assessment and Diagnosis of Autism (Whitehouse et al., 2018). The document outlines guiding principles and recommendations for the early intervention process that speaks to child and family-centred interventions, that are individualised, strength-based and neurodivergent affirming.

The gap analysis highlights the needs to improve access to a range of affordable early intervention services and supports, with professionals who have an increased level of autism knowledge and understanding. Families should also be provided with clear and correct information to support and advocate for their autistic family members.

Education

The community views survey (completed by 866 respondents, including 373 autistic people) and the primary/secondary education research review identified a lack of autism knowledge held by school staff and students, which then leads to insufficient provision of accommodations and supports for autistic students in educational settings. The community views also highlighted that the focus on neurotypical learning approaches (e.g., pedagogy and assessment; curriculum), and school environments and expectations (e.g., rules; attendance requirements) designed for neurotypical students make it challenging for autistic students to attend and/or achieve.

Although few primary/secondary education policies make specific reference to autism, those that did specify that: (a) the autism knowledge and understanding of staff and students could be supported, and (b) autistic students should have access to adjustments/accommodations at school.

The gap analysis therefore highlighted a clear need to improve the level of autism knowledge and understanding of educators, as well as appropriate adjustments and accommodations, to support neurodiversity. There is also a need to consider the sensory environment in educational settings.

For postsecondary education, the research review showed that autistic students often feel prepared academically but have difficulties with daily living and social skills. Autistic students experience social, emotional, communication, and sensory difficulties which impact their postsecondary education and mental health. Poor self-advocacy skills make it difficult for autistic postsecondary students to access available supports. There is a lack of research that investigates the effectiveness and impact of interventions, supports, and programs e.g., peer mentoring programs, mental health, and sensory interventions) on autistic students’ outcomes relating to academic and personal changes over a longer period, including rigorous pre-post measures.

There is only one policy initiative related to autism that addressed parts of postsecondary education (the Australian Government Response to the Select Committee on Autism (report): Services, support, and life outcomes for autistic Australians). This policy initiative highlights the need for improvement of education for autistic people as part of the development of the National Autism Strategy and suggests that autistic postsecondary students’ can be supported by increasing understanding among higher education staff, promoting autism-friendly campuses and information, and adopting autism inclusion and peer mentoring programs.

Research evidence, policy and landscape mapping to inform the National Autism Strategy

4 | Executive Summary

Employment

The community views survey (completed by 526 respondents, including 305 autistic people) identified that there were difficulties in finding, obtaining, maintaining, and progressing in employment for autistic people. A lack of education and awareness about autism in the workplace, potentially leading to bullying and discrimination, was seen as a primary barrier to employment for autistic people, as well as a lack of appropriate work environments and support for flexible working arrangements from employers. Providing supportive physical and policy environments, incentivising employers to hire autistic people, and matching job roles with autistic peoples’ strengths were seen as ways to increase autistic employment.

The research review findings largely focused on evaluating interventions and supports for employment. Less research considered predictors of employment for autistic people, benefits of autistic employment, barriers and facilitators to the employment of autistic people, and international policy related to employment of autistic people. The research literature highlighted a need for further research on the experiences and needs of autistic people in the workplace, and neurodiversity framed supports and neurodivergent focused programs to increase employment and employment related skills. Limited policy documents were identified in relation to the employment of autistic people, with most presenting increasing autistic employment as a priority.

The gap analysis indicated a clear need to increase the autism knowledge of people within workplaces (employers and employees). This knowledge, in turn, could enhance employers’ openness to employing autistic people, and supports an increase in accommodations and supports across the employment process (e.g., application, interview, and within the workplace) to support the employment of autistic people.

Housing and independent living

The community views survey (completed by 186 respondents, including 105 autistic people) indicated that autistic people encounter a number of challenges when trying to access housing. These include; a general lack of availability of social/public housing, difficulty accessing affordable private housing that is suitable to meet their sensory and spatial design needs, and a lack of adequate financial means and supports to sustain independent living and navigate the rental process.

The research review addressed considerations for housing design such as planning for easy navigation and sensory sensitivities to accommodate autistic people. Additionally, the policy review indicated that multiple federal and state housing policies highlighted funding availability through the NDIS for housing as well as the need to prioritise the availability, affordability and suitability of housing for people with disabilities.

Taken together, the gap analysis highlighted a need to ensure that there is a choice of accessible housing options available for autistic people, with people working in the sector increasing their knowledge of autism.

Research evidence, policy and landscape mapping to inform the National Autism Strategy

5 | Executive Summary

The justice system

The community views survey (completed by 166 respondents, including 86 autistic people) and the justice system research review identified a lack of autism knowledge held by people within the justice system as a clear problem. This lack of knowledge can lead to insufficient use of accommodations and supports, misinterpretation of the behaviours of autistic people, discrimination, and a system/process that is not appropriate for, or supportive of, autistic people.

Few justice system policies made specific reference to autism. Policies that did make specific reference highlight that a person’s autism diagnosis should be considered when interpreting their behaviour within a justice setting, and that the environment should support accessibility. Policy also discussed specialist pathways (e.g., Assessment and Referral Court List) that seek to address underlying factors contributing to autistic people offending.

The gap analysis identified a clear need to increase the autism knowledge and understanding of people working in the justice system, and improving the identification of autistic people within this setting. There is also a need to provide appropriate supports and accommodations, assist with the development of an accessible and inclusive system, and reduce discrimination within the justice system. Further research into why autistic people enter the justice system, and the efficacy and use of specialist diversionary pathways is needed.

Mental health services

The community views survey (completed by 529 respondents, including 250 autistic people) and research review suggested that many mental health providers do not have sufficient knowledge of autism or its inter-relationship with mental health problems (or other diagnoses). This means that many providers do not know how to tailor their approaches to autistic clients or do not provide the accommodations or supports that would enable autistic people to access their service/s. Additionally, the limited availability of providers, long waiting lists and prohibitive cost lead to many autistic people not accessing mental health supports or having to wait a long time to do so. This lack of services and delay in accessing support for mental health challenges is particularly impactful for the autistic community given the research showing that significantly more autistic people than non- autistic people experience mental health challenges.

The policy review highlighted that mainstream services should be equipped to meet the needs of all autistic people, emphasising the need for autism-specific training of mental health professionals. There is also a need for more evidence-based mental health supports or interventions designed specifically for autistic people. Further research into how and why autistic people experience elevated rates of mental health problems, and a “mental health needs analysis” to evaluate both met and unmet mental health care needs for autistic Australians, will help to inform service provision into the future.

Research evidence, policy and landscape mapping to inform the National Autism Strategy

6 | Executive Summary

Physical health services

Similar to mental health services, both the community views survey (completed by 606 respondents, including 253 autistic people) and research review suggested that many physical healthcare providers do not have sufficient knowledge of autism, do not know how to tailor their approaches to autistic clients or do not provide the accommodations or supports that would enable autistic people to access their service. Additionally, the environment (e.g., sensory experience) of physical healthcare settings, the communication demands and the logistics of making appointments, reduces accessibility of healthcare services for autistic people. These can result in some people avoiding accessing physical healthcare, even when necessary. Over one quarter of autistic people who completed the community views survey felt that they were dismissed or not believed by healthcare providers. These problems with accessing physical healthcare are all in addition to the broader problems of long waiting lists, high costs, and a limited availability of providers.

The policy review highlighted the need for specialist training on how to support the needs of people with disabilities, which would include autistic individuals. Policy also recognises a need for supports and accommodations to be provided to autistic individuals to enable them to attend their healthcare appointments. International healthcare settings (e.g., United Kingdom) have both general and specialised training available for professionals who would benefit from more specific knowledge of autism, which align with a core capabilities and competencies framework for supporting autistic people. The gap analysis also highlights the need for more autistic people in healthcare settings, either as staff or on advisory boards, to ensure that autistic perspectives are incorporated throughout the healthcare service. To inform service provision in the future, further research is needed into how and why autistic people experience elevated rates of physical health problems, and a “physical healthcare needs analysis” to evaluate both met and unmet physical health care needs for autistic Australians.

Key needs; recommended areas for action and improvement

across domains

The results of the community survey, research reviews, and policy reviews detailed in this report highlight areas of need, across a range of sectors, that are required to support better outcomes for autistic people. The following needs were noted in over half of the domains. These could be considered as priority areas to be addressed within all areas of the National Autism Strategy

• There is a need for a greater understanding about autism and all the diversity of its presentation within government, services, professionals, workplaces, and/or the community. This was noted within all domains.
• There is a need for adjustments, accommodations, and supports to be provided to enable autistic people equitable access to services. This was noted in 7 out of the 8 domains.
• There is a need for increased, timely, and equitable access to services (e.g. through more services, more providers, broader geographical access or locations). This was noted in three- quarters of the domains.
• There is a need for physical environments (e.g. schools, hospitals, court rooms) to be sensory considerate (e.g. by reducing sensory stimuli in environment). This was noted in half of the domains.
• There is a need to reduce the financial barriers to accessing services (e.g. through subsidisation, price caps etc.). This was noted in half of the domains.

Research evidence, policy and landscape mapping to inform the National Autism Strategy

7 | Executive Summary

Other needs noted within at least two domains were:

• There is a need for more co-produced research to understand the factors that contribute to autistic people needing to access services and supports (e.g. what leads to more autistic people experiencing more physical or mental health problems?).
• There is a need for more options and choice about services or settings that will best support autistic people, according to their needs and preferences.
• There is a need to ensure that autistic people feel safe, heard and believed by professionals within services.
• There is a need for more neurodiversity affirming approaches and acceptance of autism and neurodiversity.
• There is a need for clear, consistent, and equitable approach to autism assessments.

Whilst the findings reported in this document are in specific domains, none of these domains exist in isolation, and improvements in one area could lead to significant benefits in others. For example, if autistic people were able to receive their diagnosis at an earlier age (improvement in diagnosis services) and then receive supports or interventions which are aligned with their goals to promote well-being (early interventions or supports), these may lead to improvements in education and mental health in childhood, which relate to improved employment, post-school education and mental health outcomes. Similarly, if more teachers and school leaders received autism-specific training to promote inclusivity and acceptance of diversity in schools, as well as strategies to support students effectively (education), autistic people could be more successful at school, this would support participation in post-secondary education and employment, which in turn is associated with financial security. Teacher and school leader understanding of inclusivity and acceptance of diversity could also support changes in the attitudes and actions of non-autistic students towards autistic students, which could provide a societal shift in how autistic people are treated in the home, workplace (employment), healthcare, and other settings (e.g., the justice system). Such interactions highlight the importance of systems, supports and services for autistic people working together rather than in ‘siloes’, informed by the perspectives of autistic people and their supporters to ensure changes to services and systems are appropriate for autistic people.

What happens next?

The above needs are recommended areas for action and improvements which can be addressed within the National Autism Strategy. Given their breadth and impact, addressing these areas for action and improvement has the potential to redefine outcomes for autistic people across the lifespan. A commitment to such change will need to be driven by policy to enable and facilitate change through all levels of government, systems, organisations and professionals. The latter include researchers, autistic-led organisations and supporters of autistic people.

Stakeholders must therefore come together to address these issues nationally and genuinely collaborate to work towards a better future for autistic people in Australia. This is a call to action for all those supporting autistic Australians to commit to proactively address the needs identified above and make steps towards positive change in supports and service provision.

Research evidence, policy and landscape mapping to inform the National Autism Strategy

8 | Executive Summary

This work can help inform those guiding and developing the

National Autism Strategy

This report is being provided to the Department of Social Services, so they (and other government departments) can use it to inform their work. Throughout the process of undertaking this project, we have presented the findings to the working groups who are supporting the Oversight council of the National Autism Strategy. We will continue to share the findings of this work with those involved in the National Autism Strategy whenever possible.

This work can help evaluate if the National Autism Strategy leads

to “real change”

“However beautiful the strategy, you should occasionally look at the results.” — Winston Churchill

This work provides a baseline upon which the outcomes of the National Autism Strategy can be evaluated, and its impact tracked. The community views survey can be repeated and the prevalence of the problems in each service domain compared to that in this report. This will help compare the experiences of autistic people and their supporters from before and after the strategy is implemented, therefore evaluating any “real change” experienced by the community. The research and policy reviews can also be updated to evaluated progress in specific areas relevant to the contents of the strategy.

This work can help inform those supporting autistic people across

Australia

Although this work was conducted to help inform those developing the National Autism Strategy, the findings have importance and relevance for all of those supporting autistic people and their families across Australia, in a policy, service, personal or research capacity. It will require continued and meaningful collaboration across these areas, both at a Federal and state/territory level, to improve outcomes for autistic Australians. To ensure this work contributes to such processes and change, we will also publish the findings of this work in academic journals and present summaries to clinicians and researchers so that they can use this to inform and inspire their work in the future.

Research evidence, policy and landscape mapping to inform the National Autism Strategy

9 | Executive Summary

1. Introduction

1.1 Background

The Australian Government has committed to developing a National Autism Strategy (the Strategy). They engaged Autism CRC to assist with developing this strategy, including conducting research and consultation activities in the initial phase of the strategy development process. This document outlines the activities related to (i) the community views survey which aimed to identify key issues related to the service domains; (ii) the review of the current evidence, practice, and policy landscape across a range of autism-related service domains and (iii) a gap analysis.

1.2 Aims

The aim of this project was to undertake a series of focused activities tailored towards the specific outcome of supporting the development of the Strategy. These activities focus on the following service domains:

• Diagnosis
• Early intervention and support
• Education (including post-secondary education and education systems)
• Employment
• Health and mental health services (separated into two sections)
• Housing
• Justice (including legal, policing, judicial, and custodial services).

For each domain there were four tasks:

1. To gain perspectives from the autistic and autism communities
2. To review the academic literature
3. To review federal, national, and state and territory policy relating to autism
4. Conduct a gap analysis, bringing together the findings from community, research, and policy to compare the current situation to desired or expected outcome.

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10 | Introduction – Background

2. What we did

2.1 General methods

This report focuses on seven service domains, aligned with those identified in the Select Committee (report): Autism services, support and life outcomes for autistic Australians. One of these domains (Health) was further divided to allow for a more thorough understanding of this topic area. This resulted in the following domains for review:

• Diagnosis
• Early intervention and support
• Education
• Employment
• Housing
• Justice (including legal, policing, judicial, and custodial services)
• Mental health services
• Physical health services.

To capture a broad understanding of each topic area, three approaches were taken, each of which is discussed in more detail in the following subsections.

1. The “1,000 insights” community views online survey to capture the perspectives of the autistic community and other stakeholders
2. Umbrella review of all systematic reviews relating to the service area (used to identify research gaps)
3. Policy review of all Australian federal, state, and territory policies and guidelines.

The findings of these three approaches were used to conduct a gap analysis, allowing identification of the current experiences of autistic people in relation to each domain and how this compares to the desired or expected state within policy or research. This information can inform the National Autism Strategy through informing the development and implementation of domain-specific or domain-general action plans which aim to achieve the desired outcomes.

2.1.1 The “1,000 Insights” community views survey

An online survey was used to capture the thoughts and perspectives of the autistic community and other relevant stakeholders (e.g., families/carers, teachers, health professionals) on each of the service domains listed above. This survey was co-designed with the research team, autistic advisors, and Autism CRC staff. The survey invited people to answer four questions for each of the service domains, with some aspects tailored to the specific domain:

1. What are three problems that autistic people experience within this service domain?
2. What do you think is causing these problems?
3. What do you think could prevent or reduce these problems?
4. What is working well, or has worked well, for autistic people within this service domain?

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11 | What we did – General methods

People sharing their insights were able to provide responses for as many service domains as they wished. Within each domain, the person answered the questions using their own words (i.e., they were not given tick boxes or predefined options to select from). This ensured the answers would come from the community rather than being those predefined by the research team and/or their advisors. In addition to the above questions, the survey garnered insight into the main issues that may make it challenging for autistic people to have their say in, and the preferred methods for providing insight and feedback on, the Strategy development. The community views survey is provided as Appendix B.

2.1.1.1 Ethics

The survey received full ethical approval from Griffith University on 3rd March 2023 (see Appendix B). Autism CRC listed the survey as live on their recruitment page on 13th March 2023, following which the Department of Social Services shared information with interested parties through their e-newsletter. The survey was also promoted through the Autism Centre of Excellence Facebook page on 13th March 2023. The promotion of the survey continued through until May 2023. The survey was closed at midnight on May 5th 2023.

2.1.1.2 Number of responses received

In total, 1,562 people clicked through to the survey, and 1,018 people selected one or more domains to comment on in the survey. Table 1 summarises the demographic details of the survey respondents. Note that respondents often identified within multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the total percentage is greater than 100%.

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12 | What we did – General methods

Table 1: Community views survey respondent demographics

Given the relatively small number of people who identified as: (a) having a disability (physical or intellectual), (b) being an augmented and alternative communication user, (c) being non-speaking; (d) being Aboriginal and/or Torres Strait Islander; (e) being culturally or linguistically diverse, or (f) living in out of home care or supported accommodation, it is not possible to generalise the findings from this survey to all autistic people. The use of an online survey method also automatically excludes those without access to an appropriate device or those who do not have access to the internet. Further work, using tailored approaches, is needed to learn from the experiences of these underrepresented groups.

Respondents could choose to report on 0–8 service domains; 16% of respondents chose to report on one service domain, 15% on five domains, and 14% on six domains. The exact number of respondents to each service domain will be described in the relevant results section of this report. For context, the service domain with the most responses was education, where 866 respondents answered the questions. Autism diagnostic services, employment, mental healthcare, and physical healthcare each had 520–610 respondents. The service domain of early intervention had 350 respondents and the service domains of the justice system and housing each had fewer than 200 respondents.

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13 | What we did – General methods

2.1.1.3 Analysis of responses

The answers to each of the four questions were coded using inductive content analysis. Inductive means that the categories and codes were developed from the answers provided by the community; this means that the research team did not predefine any codes or hold any preconceived notions of what the responses should be, therefore allowing the community views to inform the findings. Content analysis involves reading every single response from every single respondent and systematically and objectively grouping similar responses together into codes (which represent a similar concept). Because people’s experiences are so varied, this initially results in a large number of codes. Similar codes are then compiled into categories. To quantify the most common responses, the number of respondents who provided a response within each category is then calculated. To ensure that the categories discussed in this report represent the beliefs of the community rather than reflecting specific experiences, only those categories mentioned by 5% or more of respondents are included in this report.

For each question, respondents were asked to list up to three things; if they listed more than three, only the first three responses were coded. For this report, within each service domain, the 10 most frequently reported responses across the entire sample for each question are reported. On occasions when there were multiple responses with the same frequency in the tenth position, the total number of responses reported is greater than 10 to ensure all categories with equal frequencies in the tenth position are represented. The proportion of respondents within specific respondent groups (e.g., autistic adult, medical practitioner) are also reported to allow for similarities or discrepancies between respondent groups to be explored; this is important to consider when planning strategies so advice can be tailored. Response categories not within the 10 most frequently reported but deemed of high impact or of high importance are also reported.

2.1.2 Umbrella review

In technical terms, an umbrella review is a systematic review of all previous systematic reviews on a specific area. This is a useful approach as it provides a broad understanding of the research that has been conducted in an area, allowing for the strengths and limitations of this body of research to be considered. However, due to an umbrella review only reporting upon papers that are included within published systematic reviews, this method does not report on the very latest research findings. Separate umbrella reviews were conducted for each service domain, with some being separated to allow a more discrete focus. Each umbrella review followed a standard process:

• Search of academic journal article databases using consistent search terms to identify all systematic reviews that have addressed a topic related to autism within the service domain (e.g., experiences of autistic people in the domain, knowledge of autism by service professionals)
• Careful consideration of each article identified to determine whether it is relevant for the review and, therefore, can meaningfully contribute to knowledge of the area
• Extraction of relevant information from each article to help identify key considerations and information about autism within the service domain.

Two of the umbrella reviews (Diagnosis; Early Intervention and Support) were conducted by A/Prof David Trembath (Griffith University), Dr Hannah Waddington (Wellington University), and colleagues

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14 | What we did – General methods

as part of an Autism CRC project. These findings have been incorporated into this report. The remaining eight umbrella reviews were conducted specifically for this report.

Information from another Autism CRC project, “Quality of life and well-being of autistic individuals with complex support or communication needs”, was provided by Dr Kate Simpson. This was combined with the findings from the umbrella reviews undertaken specifically for this project and used to inform the Mental Health Service section of the report (Section 4.6). The information provided by Dr Simpson has been included within the Mental Health services appendix: Appendix J-6.

2.1.3 Policy review

Policy reviews provide understanding of the policies and guidelines that are present in each service domain. Although this project focused on topics related to autism within these service domains, policies and/or guidelines relating to disability were also identified as, in some cases, these policies may be relevant or applicable to the autistic and autism communities.

Each policy review used a standard process to ensure consistency across the domains:

• Review of Australian Federal Government websites to identify a comprehensive list of relevant professions and/or organisations (e.g., general practitioner, nurse, health care worker)
• Internet search to identify policy and/or guidelines relevant to autism and/or disability within the given professions/organisations. These searches were conducted at an Australian federal, national (e.g., national governing body, such as Australian Health Practitioner Regulation Agency), state, and territory level
• Extraction of relevant information within identified polices and/or guidelines.

Two of the policy reviews (Diagnosis; Early Intervention and Support) were previously conducted by A/Prof David Trembath (Griffith University), Dr Hannah Waddington (Wellington University), and colleagues as part of an Autism CRC project. The relevant findings from these reviews have been incorporated into this report. The current policy overview for the Education section has been undertaken specifically for this project; however, a full mapping of the Australian educational policy review is being undertaken in the separate Autism CRC project “Reducing Educational Barriers in Australian Schools”. All remaining policy reviews were conducted specifically for this report by the project teams (Griffith University or Curtin University).

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15 | What we did – General methods

3. What we found

3.1 Diagnosis

3.1.1 The “1,000 Insights” community views survey

A total of 545 respondents answered at least one of the questions on diagnosis. This included 237 autistic people and 338 family members or carers of autistic people. The 10 most frequently reported responses are reported within this section. On occasions when there were multiple responses with the same frequency in the tenth position, the total number of responses reported will be greater than 10 to ensure all categories with equal frequencies in the tenth position are represented. However, the full list of response codes for each question within the diagnosis domain is available in Appendix C-1.

The tables for each question describe the response categories (with example participant responses) in order of the most frequently reported to the least frequently reported. For each category, percentages are provided to indicate the proportion of a respondent group whose response reflected the specific category. These groups are (a) the entire sample (i.e., everyone), (b) autistic people, (c) family members/caregivers of autistic people, (d) mental health professionals; (e) medical and health allied professionals; and (f) all respondents not represented in one of the identified groups.

3.1.1.1 Problems experienced by autistic people in relation to diagnosis

A total of 545 respondents opted to answer this question on diagnosis. This included 237 autistic people and 338 family members or carers of autistic people. The problems experienced were coded into 12 categories, which fall under the following three broad areas:

• Before the diagnostic process starts, including getting referrals, knowing how to navigate the diagnosis process, getting hold of services or professionals who can initiate the diagnosis process, and the long wait time associated with accessing them
• During the diagnosis process, including securing the funds required for assessments and services, deficit-based manuals for diagnosis, health professionals not being specialised in diagnosing autism, not following the Autism CRC best practice National Guideline for Assessment and Diagnosis of Autism, not acknowledging a person or family’s concerns, and a very lengthy unclear process that is very taxing for the person or family pursuing a diagnosis
• After the diagnosis process, including misdiagnosis/over/under-diagnosis of autism, lack of support and information for those who receive a diagnosis and those who do not.

Table 2 ranks the 10 problems that autistic people experience in relation to the diagnosis service (based on the survey responses). The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem. Respondents often identified within multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the number of respondents in subgroups exceeds the total number of all respondents.

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16 | What we found – Diagnosis

Of note is that these data show that approximately:

• Half of respondents highlight that it is hard to access diagnosis specialists, especially in remote areas.
• 1 in 2 respondents highlight that there are long wait times for starting the diagnosis journey.
• 1 in 3 respondents highlight that the cost of diagnosis is so high that many cannot pursue a diagnosis.
• 1 in 3 respondents highlight that health professionals’ knowledge of autism is outdated, especially about female, adult and culturally diverse people.

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17 | What we found – Diagnosis

Table 2: 10 most frequently reported problems experienced by autistic people and their family/carers in relation to diagnosis

| Rank | Problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | Respondents who stated this as a problem | | | | | All respondents
N = 545 | Autistic people
n = 237 | Family member/caregiver of autistic person
n = 338 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 1 | Access to health professionals who are experts in diagnosing autism especially in remote places. | “Professionals with the ability to diagnose autism for adults are few and far between. Unless you live in one of the capital cities, your chances of finding one are low.” (ID 479) | 54% | 46% | 55% | 55% | 52% | 57% | | 2 | Long wait times for starting the diagnosis journey.

(e.g., wait times being longer in public system, many services not accepting new clients) | “The waitlist for paediatrics is 3 years long and by the time the child is seen they are way past “early intervention”.“ (ID 304) | 52% | 44% | 57% | 55% | 50% | 53% | | 3 | High costs of pursuing an autism diagnosis especially when going through the private system.

(e.g., those with financial problems miss out on diagnosis) | “High cost of diagnosis and diagnostic services for people who statistically generally have a lower earning capacity. Waiting lists for diagnostic services NDIS not covering the cost of diagnosis.” (ID 1000) | 40% | 45% | 40% | 40% | 44% | 38% |

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18 | What we found – Diagnosis

Table 2 (continued)

| Rank | Problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | Respondents who stated this as a problem | | | | | All respondents
N = 545 | Autistic people
n = 237 | Family member/caregiver of autistic person
n = 338 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 4 | Health professionals with outdated knowledge of autism

(e.g., not recognising autism representations in females, adults, and those with less stereotypical behaviours, not recognising masking, ableist attitude towards autism, not recognising the vastness of the autism spectrum, trying to fit everyone into a box) | “Amongst professionals, a lack of awareness, training and true understanding of the complex variability of autistic expression and experience, especially for female and less ‘stereotypical’ cases ** even and especially amongst those whose job is the diagnosis and treatment of autism. The outcome is the denial and exclusion of truly autistic people who must struggle on without the assistance and accommodations they so dearly need that diagnosis would have opened up.” (ID 1512) | 30% | 37% | 32% | 35% | 33% | 25% | | 5 | Gatekeepers’ and educators (GPs, teachers) limited or outdated knowledge of autism

(e.g., GPs lack of understanding of autism leading to no or delayed referrals, teachers not picking up the signs in a student, dismissing parents’ concerns, not knowing how to inform, how or when one can pursue diagnosis) | “Dismissive and poorly educated GPs rejecting referrals for diagnosis because of their incorrect assumptions (i.e., autistic people can’t make eye contact, girls aren’t autistic, autistic people don’t have the capacity to maintain relationships or careers, etc).” (ID 246) | 9% | 11% | 9% | 6% | 9% | 8% |

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19 | What we found – Diagnosis

Table 2 (continued)

| Rank | Problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | Respondents who stated this as a problem | | | | | All respondents
N = 545 | Autistic people
n = 237 | Family member/caregiver of autistic person
n = 338 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 6= | Limited funding or financial support opportunities as pursuing a diagnosis is very expensive

(e.g., access to NDIS funding, medical rebates) | “Providers unwilling to help low-income people who feel they have autism get a diagnosis so that they can become a participant of NDIS and get the help they need. NDIS and other providers being unwilling to help people on low-income Centrelink payments with obtaining a diagnosis of autism.” (ID 153) | 8% | 8% | 8% | 8% | 0% | 8% | | 6= | Autism diagnosis manuals are deficit-based and are not co-designed with autistic individuals.

(e.g., outdated diagnosis manuals, focusing on stereotypical behaviours, extremely pathologising, not accounting for autistic strengths) | “The DSM5 is extremely pathologising and deficit based. It makes things difficult for clinicians using it if people are autistic but may not be demonstrating at that moment enough deficit even though in other situations or times they may. And it doesn’t account for autistic strengths at all making it quite a traumatic experience to go through for many autistic people.” (ID 90) | 7% | 10% | 8% | 7% | 6% | 6% |

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20 | What we found – Diagnosis

Table 2 (continued)

| Rank | Problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | Respondents who stated this as a problem | | | | | All respondents
N = 545 | Autistic people
n = 237 | Family member/caregiver of autistic person
n = 338 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 6= | Health professionals not following the National Guideline for the Assessment and Diagnosis of Autism, resulting in miscommunication between the multidisciplinary team, misinforming families, not following a unanimous diagnosis pathway.

(e.g., inconsistent standards, differing opinions, the diagnosis pathway is confusing, assessments and the reports are vastly different) | “Maintaining diagnosis due to demands that lead to Autistic burnout living.” (ID 1330)

“Different diagnostics services will give different answers. Autistic people can have huge fluctuations in mood and it affects the diagnosis.” (ID 818) | 6% | 4% | 4% | 7% | 9% | 6% | | 6= | Lengthy diagnosis pathway

(e.g., long wait and see period, complexity due to presence of other co-occurring conditions) | “Takes years to get a formal diagnosis and lots of steps and different health professionals to go through.” (ID 1053) | 6% | 5% | 8% | 8% | 8% | 5% | | 6= | Misdiagnosis or over/under diagnosis of autism, with some health professionals pushing for an autism diagnosis.

(e.g., health professionals not spending enough time to accurately assess a person, some just diagnose for NDIS funding, making it sound like autism) | “Many professionals do not understand the vastness of the spectrum. They are trying to get people with Autism to fit into the box for “Autism”. They cannot see that everyone with Autism is different just like all neuro*typical persons have their differences. Professionals are too quick to diagnose any slight difference as Autism so that families can get access to NDIS Funding. This affects the people that really need the funding support.“ (ID 1303) | 6% | 7% | 6% | 8% | 8% | 6% |

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21 | What we found – Diagnosis

3.1.1.2 Factors causing the problems experienced by autistic people in

relation to diagnosis

A total of 471 respondents opted to answer this question on diagnosis. This included 209 autistic people and 285 family members or carers of autistic people. The factors that respondents felt were causing or leading to the problems experienced by autistic people with diagnosis were coded into 13 categories, each falling under six broad areas:

• The services cannot meet the demand, and it is difficult to access services and health professionals trained with autism and its nuances, leading to very long wait times
• Lack of subsidisation or funding
• Outdated and deficit-based understanding of autism
• Lack of a clear, unified, standardised and collaborative approach to diagnosis, knowing when, how or why to pursue a diagnosis
• Bureaucracy covering diagnosis and privatisation of the diagnostic process
• Raising awareness about autism and its associated needs and strengths.

Table 3 ranks the 13 most commonly reported factors that respondents felt were causing the problems that autistic people experience in relation to diagnosis reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.

Importantly, these data show that approximately:

• 1 in 3 respondents stated that the problems were due to a lack of government funding, subsidisation and financial support for pursuing an autism diagnosis.
• 1 in 3 respondents reported that the problems were due to a shortage of trained specialist who can support diagnosis.
• 1 in 5 respondents stated that the health professionals’ knowledge of autism is outdated.

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22 | What we found – Diagnosis

Table 3: 13 most frequently reported factors causing problems experienced by autistic people and their family/carers in relation to diagnosis

| Rank | Factors causing the problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | Respondents who stated this as a problem | | | | | All respondents
N = 471 | Autistic people
n = 209 | Family member/caregiver of autistic person
n = 285 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 1= | Issues with subsidisation or funding

(e.g., there is lack of funding such as NDIS support or medical rebates) | “Not sufficient fully funded services for parents to take children for assessment and diagnosis.” (ID 1227) | 35% | 15% | 22% | 36% | 44% | 48% | | 1= | Lack of trained specialists, services and resources for diagnosis

(e.g., hard to access health professionals, many tell families they have closed their books for the year) | “Not enough people able to diagnose.” (ID 207)

“Not enough providers with specialised skills.” (ID 558) | 35% | 13% | 21% | 36% | 33% | 32% | | 3 | Health professionals’ outdated understanding of autism

(e.g., health professionals’ knowledge based on stereotypical symptoms such as eye contact, they are not familiar with female presentations) | “Medical professionals having a pre-set belief of what an autistic person should present with for a diagnosis. e.g. pre-set belief of seeing features such as hand flapping, spinning or extreme sensory seeking behaviours as part of the diagnosis and not understanding how autism can present very differently along a spectrum.” (ID 995) | 21% | 12% | 14% | 22% | 18% | 31% |

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23 | What we found – Diagnosis

Table 3 (continued)

| Rank | Factors causing the problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | Respondents who stated this as a problem | | | | | All respondents
N = 471 | Autistic people
n = 209 | Family member/caregiver of autistic person
n = 285 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 4 | Outdated and deficit-based diagnostic manuals, resources and guidelines

(e.g., the diagnostic manuals have not been updated for a long time, guidelines and assessments are based on old-fashioned views of autism) | “Many practitioners rely solely on assessment tools that have not been updated to reflect DSM-5 diagnostic criteria. They continue to hold diagnostically incorrect views, such as that you cannot be Autistic if you make eye contact, have empathy, or are social. This is causing significant harm through lack of correct identification for referral for assessment and misdiagnosis if a person presents for Autism assessment.” (ID 1330) | 13% | 8% | 7% | 8% | 11% | 16% | | 5 | Diagnostic services struggle to meet the current demand

(e.g., not enough health professionals trained with diagnosis) | “Clearly there are not enough providers of government and private diagnostic services if it takes this long to be diagnosed.” (ID 312) | 12% | 3% | 7% | 8% | 9% | 11% | | 6 | High cost of an autism diagnosis

(e.g., the expenses related to assessments and then writing the reports being high, those with lower socio-economic status especially adults cannot access diagnosis) | “They [families/autistic adults] have to pay for the diagnostic process themselves and all of the therapy until the funding is available. This funding also may not be enough.” (ID 170) | 11% | 6% | 7% | 10% | 7% | 3% |

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Table 3 (continued)

| Rank | Factors causing the problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | Respondents who stated this as a problem | | | | | All respondents
N = 471 | Autistic people
n = 209 | Family member/caregiver of autistic person
n = 285 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 7= | Lack of trained autistic or autistic-informed health professionals

(e.g., inadequate training, not specialised in diagnosis, recognising more subtle presentations especially in females) | “There are less opportunities to become a psychologist. When there are less psychologists there are less specialising in autism, thus the ones available are overwhelmed with clients.” (ID 758) | 8% | 4% | 5% | 7% | 2% | 1% | | 7= | Community’s lack of awareness about autism and its representations, especially in females and adults

(e.g., families or educators not recognising the signs, old fashioned perspectives, lack of acceptance and awareness in the society) | “General embarrassment in the community to talk about “being different” Fear that if something is identified, it will make it worse. General lack of knowledge concerning autism with people “who should know” ie child care, teachers, health professionals etc.“ (ID 452) | 8% | 4% | 5% | 8% | 2% | 5% | | 9 | Lack of unified, standardised and collaborative approach

(e.g., inconsistencies in the system, poor communications within a multidisciplinary diagnosis team) | “A lack of unified approach to diagnose and support ASD. A lack of accountability and no regulatory oversight. Accountability needs to be genuine.” (ID 616) | 6% | 3% | 3% | 7% | 7% | 5% |

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Table 3 (continued)

| Rank | Factors causing the problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | Respondents who stated this as a problem | | | | | All respondents
N = 471 | Autistic people
n = 209 | Family member/caregiver of autistic person
n = 285 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 10= | Lack of a government strategy, leading to bureaucracy and privatisation of the diagnosis process

(e.g., some just take advantage of the long waitlist in public to charge families more, elitism, bureaucracy in the system) | “The lack of action by the previous federal government in adequately funding and staffing the mental health system or making any attempt to address the ongoing problems and failings within the mental health and disability systems as clearly identified by thousands of people including experts in these areas and various enquires and parliamentary committee reviews.” (ID 1440) | 5% | 3% | 4% | 11% | 4% | 14% | | 10= | A need for training more health professionals with autism diagnosis

(e.g., not enough health professional experts in diagnosis, train other professions to support diagnosis) | “Shortage of specialists and the time and cost associated with psychologist training and accreditation (I left a psychology degree due to the exorbitant amount I was going to have to pay for supervision).” (ID 144) | 5% | 2% | 2% | 7% | 11% | 10% | | 10= | Unclear diagnosis process: Knowing when, how or why to get diagnosed

(e.g., no idea when to start the diagnosis and who to contact) | “[Diagnostic services] do not advertise they are able to do autism diagnosis, you have to contact Autism organistions to find out who they are. The process is not made clear to carers or the autistic person. Once diagnosed, the provider does not have any contacts for further help in terms of services available and any government assistance.” (ID 915) | 5% | 2% | 2% | 5% | 7% | 1% |

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Table 3 (continued)

| Rank | Factors causing the problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | Respondents who stated this as a problem | | | | | All respondents
N = 471 | Autistic people
n = 209 | Family member/caregiver of autistic person
n = 285 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 10= | Very long wait times to access specialists

(e.g., long queues to access health professionals, long waiting period in the public system) | “waiting times with public health can be 6-12 months which is an enormous long time for developing children.” (ID 1199) | 5% | 1% | 3% | 5% | 2% | 0% |

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3.1.1.3 Factors that could prevent or reduce the problems experienced by

autistic people in relation to diagnosis

A total of 387 respondents opted to answer this question on diagnosis. This included 164 autistic people and 233 family members or carers of autistic people. The factors that respondents identified as preventing or reducing the problems experienced by autistic people with diagnosis were coded into nine categories. These categories fall under the following five broad areas:

• Government funding and financial support
• Training more health professionals and updating them about the nuances of autism diagnosis
• Updating the diagnosis manuals/guidelines to be neurodiverse affirming and have criteria for adult diagnosis
• Providing clear and uniform diagnosis based on evidence (the National Guideline for the Assessment and Diagnosis of Autism)
• Increase awareness of autism and its diverse representations.

Table 5 ranks the nine most commonly reported factors that respondents reported could prevent or reduce the problems that autistic people experience in relation to accessing diagnosis reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.

Importantly, these data show that there were clear predominant factors highlighted by respondents:

• More than half of the respondents stated that government funding and financial support for diagnosis could prevent or reduce the problems experienced by autistic people in relation to diagnosis.
• 1 in every 3 respondents identified that training health professionals with the nuances of autism, especially for diagnosing females and adults could prevent or reduce the problems experienced by autistic people in relation to diagnosis.

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28 | What we found – Diagnosis

Table 4: 9 most frequently reported factors that could prevent or reduce the problems experienced by autistic people and their family/carers in relation to diagnosis

| Rank | Factors that could prevent or reduce the problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | % who stated this as a problem | | | | | All respondents
N = 387 | Autistic people
n = 164 | Family member/caregiver of autistic person
n = 233 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 1 | Government funding, financial support or medical rebates

(e.g., Medicare subsidies for assessments, reimbursement through NDIS, rebate on assessments) | “More funding provided to diagnosis ASD for better access for vulnerable communities.” (ID 616) | 53% | 60% | 55% | 42% | 33% | 32% | | 2 | Training health professionals with the nuances of autism

(e.g., symptoms in females and adults, masking) | “All healthcare professionals need to be trained about autism so that they can guide people appropriately.” (ID 18) | 33% | 41% | 33% | 18% | 12% | 20% | | 3 | Increase the number of health professionals qualified to diagnose autism

(e.g., train more health professionals) | “Increase workforce numbers and capabilities linked to need and location.” (ID 141) | 13% | 9% | 13% | 9% | 8% | 7% | | 4 | Enable more health professionals to be involved in diagnosis process

(e.g., having other professions such as general psychologists and OTs trained and accredited) | “Access to enough psychologists for assessments and therapies because only a small number of psychologists are endorsed “clinical” and by limiting assessments to only “endorsed” clinical or other psychologists, it is damaging for the general public… Amend the Autism Research recommendations to advise ALL psychologists can conduct autism assessments (ID 555) | 12% | 7% | 12% | 8% | 6% | 5% |

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Table 4 (continued)

| Rank | Factors that could prevent or reduce the problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | % who stated this as a problem | | | | | All respondents
N = 387 | Autistic people
n = 164 | Family member/caregiver of autistic person
n = 233 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 5= | Updating the diagnosis manuals/guidelines to be neurodiversity affirming and have criteria for adult diagnosis

(e.g., manuals that consider female representations, not deficit-based, consider diversity of symptoms) | “Fixing the DSM to add a new diagnosis for people who are diagnosed in adulthood.” (ID 40) | 8% | 10% | 8% | 5% | 0% | 4% | | 5= | Providing clear and uniform diagnosis process based on evidence-based practices, such as the National Guideline for the Assessment and Diagnosis of Autism

(e.g., guidelines for assessment tools, standardised practices, national and international guidelines) | “Follow the international standard of autism diagnosis” (ID 426)

“Have clear and readily available guidelines.” (ID 47) | 8% | 6% | 6% | 4% | 3% | 4% |

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30 | What we found – Diagnosis

Table 4 (continued)

| Rank | Factors that could prevent or reduce the problems experienced by autistic people and their family/carers in relation to diagnosis | Direct insight | % who stated this as a problem | | | | | All respondents
N = 387 | Autistic people
n = 164 | Family member/caregiver of autistic person
n = 233 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 5= | Increase awareness of autism and its representations in community

(e.g., training parents and teachers to recognise the signs, autism awareness campaigns) | “A top-down culture change that is precipitated by open communication about differences. Changes to policies and procedures affected by the employee lifecycle. Opening up a channel for employees with neurodiversity (or disability in general) where there is forum for constant communication to senior levels of management. Awareness training for all would be- or already are- managers, regardless of whether their employees have disclosed disability.” (ID 1415) | 7% | 8% | 8% | 8% | 2% | 4% | | 8 | Tertiary education providers to train and support more students

(e.g., developing courses or diplomas that support experts for diagnosing autism) | “Fund tertiary education providers to train more experts in neurodiversity paediatrics.” (ID 129)

“Universities need to look at the skills gap in training psychologists qualified to diagnose.” (ID 312) | 6% | 5% | 6% | 7% | 2% | 2% | | 9 | Support students interested in professions in diagnosis

(e.g., financially support tertiary students, provide incentives) | “Include supervision as part of psychology degree programs. Don’t force psych graduates to have to fight to find a supervisor who then charges them half a year’s salary when they haven’t even started earning a cent yet.” (ID 144) | 5% | 6% | 5% | 2% | 2% | 2% |

Note. *all other groups that have not been identified separately

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3.1.1.4 Factors that are working well, or have worked well, for autistic

people in relation to diagnosis

Overall, 381 respondents replied to this question. This included 226 autistic people and 229 family members or carers of autistic people. From these responses, the factors that, when available, are reported to be working well, or have worked well, for autistic people in relation to diagnosis were coded into six categories, which fall under the following broad areas:

• When knowledgeable and informed health professionals, familiar and updated with the nuances of autism diagnosis, are available
• “Do not know” or nothing is/has worked well
• When families can access funding
• When they are already in connection with a multidisciplinary team
• When the health professionals acknowledge neurodiversity.

Table 6 ranks the six commonly reported factors that respondents reported to be working well, or have worked well, for autistic people in relation to diagnosis. The data are ranked from most frequently reported to least frequently reported factors that are working well across all respondents. The right-hand columns report what proportion of specific respondent groups reported this as a factor that is working or has worked well.

Importantly, these data show that approximately:

• 1 in 5 respondents expressed that when there are knowledgeable and informed health professionals who are familiar with the nuances of autism, the diagnosis works well for autistic people.

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Table 5: 6 most frequently reported factors that are working well, or have worked well, in relation to autistic people and their family/carers accessing diagnosis

| Rank | Factors that are working well, or have worked well, in relation to autistic people and their family/carers accessing diagnosis | Direct insight | Respondents who stated this as a problem | | | | | All respondents
N = 387 | Autistic people
n = 164 | Family member/caregiver of autistic person
n = 233 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 1 | Knowledgeable and informed health professionals who are familiar with the nuances of autism

(e.g., representations in females, those with less stereotypical behaviours, autism is not about eye contact) | “Medical and allied health professionals who are well trained and up to date with best practice, evidence-based diagnostic criteria of autism.” (ID 822) | 18% | 20% | 14% | 8% | 6% | 5% | | 2 | Nothing has worked, don’t know | “Nothing, this system is chaotic and there are so many stressed families waiting for answers.” (ID 1492) | 15% | 16% | 15% | 6% | 5% | 8% | | 3 | Access to NDIS funding, though very limited

(e.g., NDIS funding for some assessment sessions or health professional visits) | “Free government service which provided a quick pathway to accessing the NDIS while waiting for a formal diagnosis, noting this is only available to children seven years and under.” (ID 1162) | 10% | 5% | 10% | 6% | 8% | 4% | | 4 | Some private service providers and limited organisations who are supportive of neurodiversity

(e.g., supporting costs, being neurodiversity affirming) | “Neurodiversity-affirming services are making a real difference to how the diagnostic process is experienced.” (ID 1192) | 7% | 5% | 7% | 2% | 5% | 3% |

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Table 5 (continued)

| Rank | Factors that are working well, or have worked well, in relation to autistic people and their family/carers accessing diagnosis | Direct insight | Respondents who stated this as a problem | | | | | All respondents
N = 387 | Autistic people
n = 164 | Family member/caregiver of autistic person
n = 233 | Mental health professionals
n = 66 | Medical and allied health professionals
n = 130 | Other
n = 222 | | 5= | When families or autistic people are already part of an established good functioning multidisciplinary team

(e.g., already working with a multidisciplinary team who work collaboratively and communicate well) | “When the supportive network is good (the GP, counsellor, existing Psychologist), there is a natural flow into arranging diagnosis.” (ID 1040) | 5% | 2% | 5% | 3% | 3% | 1% | | 5= | Neurodivergent health professionals or those who are neurodiversity affirming

(e.g., neurodivergent psychologist with lived experience, health professionals who acknowledge diversity and do not focus on deficits) | “There is a small but growing segment of neurodivergent professionals specifically serving the neurodivergent community, and a properly trained neurodivergent professional will in general provide much better outcomes than a neurotypical professional without lived experience.” (ID 246) | 5% | 8% | 4% | 2% | 3% | 2% |

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3.1.2 Umbrella review

This section will present a summary of the umbrella review conducted by Waddington and colleagues (in preparation) relating to diagnosis of autism, rather than duplicating their work. The umbrella review included a total of 16 reviews, with the search strategy and search results provided in Appendix C-2 and Appendix C-3. Of the 16 included reviews, one was led by an Australian author. All included reviews were written in the last 5 years (between 2018 and 2022).

The information and findings from the included reviews are summarised in the subsections below. When reporting on the number of people or participants in the review, this will be represented as n = [number of participants]. When reporting on the number of reviews that considered a topic, this will be represented as k = [number of reviews].

3.1.2.1 Participants within included reviews

Half of the reviews (k = 8) included studies that involved individuals with an autism diagnosis (including children, adolescents, and adults), or those who were likely to receive an autism diagnosis. Studies including parents and/or family members (including mothers, fathers, grandparents, and aunts) were included in eight reviews. Seven of the reviews included clinicians involved in assessment, diagnosis, and/or provision of supports for autism. Only six of the included reviews reported the total number of included participants, which ranged between 342 and 120,540 participants.

3.1.2.2 Quality of included reviews

The quality of the included reviews was assessed using a modified version of the CACSRRS (Joanna Briggs Institute, 2020). For the included meta-analyses, scores ranged between 5 and 7 out of 11. For the 13 narrative syntheses, scores ranged between 2 and 10 out of 10 (mode = 8). Seven of the reviews (44%) were considered “high quality” because they met ≥ 80% of the items, and the remaining nine reviews (56%) were considered “low quality”. The only review to score maximum points was conducted by Legg et al. (2019).

3.1.2.3 Topics of included reviews

The included reviews covered a range of topics, with some reviews covering more than one. These topics included: recommendations to guide practitioners in assessing and diagnosing autism (k = 5), clinical tools and processes that contribute to a timely diagnosis of autism (k = 9), considerations regarding personal and environmental factors in the assessment and diagnosis of autism (k = 4), and the views and experiences of autistic and autism communities about diagnosis (k = 6). The key findings for each topic are presented in Table 6.

3.1.2.4 Research gaps

The reviews identified several research gaps, which are combined with research gaps identified by the authors of this report and summarised in Table 6. In brief, further high-quality research is needed to continually improve clinician tools and processes, including evaluation of diagnostic tools (especially with minority groups) and diagnostic measures conducted via telehealth. Research exploring the views and experiences of stakeholders is needed, especially those underrepresented in the research.

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Table 6: Umbrella review findings for diagnosis

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36 | What we found – Diagnosis

Table 6 (continued)

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37 | What we found – Diagnosis

Table 6 (continued)

* Denotes review led by Australian author.

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3.1.3 Policy and guideline review

In the area of diagnosis of autism, the focus is on the National Guideline for the Assessment and Diagnosis of Autism (Whitehouse et al., 2018). This guideline is currently being reviewed and updated by the Autism CRC, with the draft revised version released for community consultation in May 2023 (see Table 7).

Table 7: Policy and guideline review findings for diagnosis

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39 | What we found – Diagnosis

Table 7 (continued)

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40 | What we found – Diagnosis

3.1.4 Community views, research evidence, and policy/guideline

gap analysis

As well as the research gaps identified as part of the research landscape mapping, the gap analysis (see Figure 2 for process) allows comparison of the current state (predominantly based upon the community views analysis but also some findings of the umbrella review and policy review) to an improved future state (based upon community views around what is working well, policy review, and some umbrella review findings).

Figure 2: Gap analysis: Current to improved future state

The gap analysis work for the diagnosis section highlighted the following elements that need to be addressed in order reduce the problems experienced by autistic people in relation to diagnosis:

3.1.4.1 There needs to be an increase in the number of appropriately

qualified health professionals able to complete autism assessment

Current state

The community views survey highlights that there is a lack of appropriately trained health

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41 | What we found – Diagnosis

professionals able to provide an autism diagnosis. Access to diagnosticians is even more difficult in remote areas. This lack of diagnosticians has also led to extremely lengthy wait times, delaying autism diagnoses and access to services. This has been compounded by the increasing demand on existing diagnostic services. The research landscape mapping results also noted the long wait times for autism assessments as a significant barrier to accessing autism diagnoses. Limited information is included in the literature to explain the underlying causes of long wait times, and presumably these differ depending on geographical, policy, and economic contexts.

Improved future state

The community views survey highlights that there must be an increase in the diagnostician workforce, facilitated by increased availability of training for health professionals. Additionally, the community noted that broadening the scope of which professions can provide a diagnosis may be one strategy to increase the number of diagnosticians and reduce waitlists. The National Guideline for the Assessment and Diagnosis of Autism (2023) included in the policy review recommends a tiered assessment approach, where cases with high diagnostic confidence only need to be evaluated by one health professional, rather than through a multidisciplinary team. The research landscape mapping results present telehealth as a potential strategy for addressing access to diagnostic services; however, the policy review notes that telehealth is not recommended as the sole method by which to conduct a diagnostic assessment for autism.

Steps that can be taken to move from the current to the improved future state include:

• Remove financial and logistical barriers to further training for health professionals who are interested in assessment and diagnosis of autism
• Increase health profession (including paediatrician and psychiatrist) training cohort sizes and publicly funded positions
• Streamline the process for accessing an autism assessment to ensure only the necessary number of health professionals must be involved (as outlined in the National Guideline for the Assessment and Diagnosis of Autism)
• Further exploration of the utility of telehealth as a strategy to provide more diagnostic services to rural and remote areas.

3.1.4.2 There needs to be a reduction in financial barriers to accessing an autism assessment

Current state

The community views survey highlights that there are significant costs associated with obtaining an autism assessment, and that cost is a significant barrier to those seeking a diagnosis. Cost was described as particularly impactful when a diagnosis was sought through the private system. Responses noted that there was little to no government-provided financial support or rebates associated with obtaining an autism assessment. It is also possible that the limited number of available diagnosticians has increased the price of private assessments. The research landscape mapping results do not mention financial factors related to diagnosis; however, this may be due to the specific scope of the review.

Improved future state

The community views survey highlights the need for publicly funded diagnostic services, either through public health pathways or Medicare rebates for privately sought assessments. The National Guideline for the Assessment and Diagnosis of Autism included in the policy review notes that service providers should aim to reduce their costs wherever practicable, such as by limiting travel and streamlining appointments. The 2018 Guideline also recommends a review of public funding mechanisms for neurodevelopmental assessments (including autism assessments).

Steps that can be taken to move from the current to the improved future state include:

• Increase the availability of publicly funded autism diagnostic services
• Increase government subsidies for the cost of all stages of an autism assessment, including referral, comprehensive needs assessment, and diagnostic assessment.

3.1.4.3 There needs to be a greater understanding about autism in all its presentations by health professionals and the community

Current state

The community views survey highlights that health professionals lack knowledge about autism, some having outdated views or understandings. Community views report that this limited knowledge, particularly in “gatekeepers” to diagnosis, leads to no or delayed referrals where one would have been warranted. The views also discussed a limited knowledge of health professionals (including those making diagnostic assessments) about “nuances” of autism, including its presentation in women and girls, non-cis-gendered people, people with multiple conditions, and those from culturally and linguistically diverse backgrounds. The community views also noted that there was a lack of awareness and understanding about autism in the general community, which was contributing to barriers to accessing autism assessments. The research landscape mapping results note that diagnoses are complicated by the range of different presentations of autism, and that there are additional barriers to diagnosis for some populations, such as women and girls. The literature also notes that health professionals require knowledge about the range of autism presentations to provide accurate diagnoses.

Improved future state

The community views survey highlights the need for training for health professionals, updating their knowledge about autism and its many presentations and increasing the awareness and understanding of autism in the community. Community views reported that health professionals (including gatekeepers) who were knowledgeable and well informed with up-to-date knowledge about autism support positive diagnostic experiences and provide good quality assessments. The National Guideline for the Assessment and Diagnosis of Autism (2023) as part of the policy review notes that health professionals should have up-to-date knowledge and training about autism (including its different presentations), and that different factors that may influence the presentation of autism should be considered during the diagnostic assessment.

Steps that can be taken to move from the current to the improved future state include:

• Co-creation, with the autistic community, of evidence-based training about autism and its

presentations for members of the community, health professionals, and diagnosticians

• Further research, co-designed with autistic researchers, to understand the varied ways in which autism presents, to continue to update the knowledge shared with diagnosticians.
• Establishment of specialised diagnostic teams to evaluate individuals who may have fewer common presentations of autism.

3.1.4.4 There needs to be a more neurodiversity affirming approach and understanding of autism

Current state

The community views survey highlighted that current diagnostic manuals, guidelines, and resources are outdated and deficit based. In the National Guideline for the Assessment and Diagnosis of Autism (2023) document in the policy review, the inclusion of the assessment of functioning within the comprehensive needs assessment is designed to gain a comprehensive picture of a person’s strengths, challenges, and support needs, seeing the person holistically rather than only in terms of their “symptoms”. The research landscape mapping results do not explicitly discuss neurodiversity affirming or non-deficit based approaches; however, some literature notes the need to be supportive and sensitive during the diagnostic process.

Improved future state

The community views survey highlighted the need for updated, neurodiversity affirming diagnostic criteria, co-designed with autistic people. They also noted that criteria for adults should also be developed or updated. The community views also described how valuable having neurodiversity affirming and neurodivergent health professionals was during the diagnostic process. Updates made to the National Guideline for the Assessment and Diagnosis of Autism (2023) document in the policy review include those to ensure a more neurodiversity affirming approach, including having “neurodiversity affirming” as a guiding principle. It also provides several recommendations to focus on the individual’s strengths and to take a holistic view of the person being assessed throughout the diagnostic process.

Steps that can be taken to move from the current to the improved future state include:

• Updating diagnostic criteria to be neurodiversity affirming, with input from autistic people
• Co-producing, with the autistic community, training and resources to promote neurodiversity affirming practices and attitudes for health professionals
• Support to implement the neurodiversity affirming recommendations outlined in the updated diagnostic guideline.

3.1.4.5 There needs to be implementation of a clear, consistent, and equitable approach to autism assessments

Current state

The National Guideline for the Assessment and Diagnosis of Autism (2018) document included in the policy review has been in place since 2018, with a range of implementation resources provided. However, the community views survey highlighted that the diagnostic pathway is lengthy, unclear,

and inconsistent. It was noted that there is a lack of a unified, standardised, and collaborative approach causing confusion about when, how, or why to utilise diagnostic services. They report that health professionals are not following the best practice outlined in the policy document, resulting in miscommunication and misinformation. The research landscape mapping results identified that facilitators to a high-quality diagnostic process included clear referral processes and the use of multidisciplinary teams.

Improved future state

The community views survey identified the need for diagnosticians and providers to offer clear, evidence-based, and uniform diagnoses by implementing the guidelines outlined in the National Guideline for the Assessment and Diagnosis of Autism (2023) document in the policy review. The benefit of diagnoses being delivered by multidisciplinary teams was also noted.

Steps that can be taken to move from the current to the improved future state include:

Development of resources to facilitate the implementation of the national guidelines outlined in the National Guideline for the Assessment and Diagnosis of Autism (2023) document in clinical practice across all contexts

• Providing funding (e.g., Medicare rebates) to enable providers to implement all recommendations of the national guidelines and provide high-quality, consistent diagnostic services
• Streamline pathways from referral to service to ensure access, consistency, and clarity regarding processes and pathways for individuals and families
• Ongoing funding to implement and revise the National Guideline for the Assessment and Diagnosis of Autism, to allow it to respond to changes in knowledge and policy context over time.

3.2 Early intervention and support

3.2.1 The “1000 Insights” community views survey

A total of 350 respondents answered at least one of the questions on early intervention and support. This included 115 autistic people and 238 family members or carers of autistic people. The 10 most frequently reported responses are reported within this section. On occasions when there were multiple responses with the same frequency in the tenth position, the total number of responses reported will be greater than 10 to ensure all categories with equal frequencies in the tenth position are represented. However, the full list of response codes for each question within the early intervention and support domain is available in Appendix D-1.

The tables for each question describe the response categories (with example participant responses) in order from the most frequently reported to the least frequently reported. For each category, percentages are provided to indicate the proportion of a respondent group whose response reflected the specific category. These groups are: (a) the entire sample (i.e., everyone), (b) autistic people, (c) family members/caregivers of autistic people, and (d) all respondents who are not represented in one of the groups.

3.2.1.1 Problems experienced by autistic people in relation to early intervention and support services

A total of 350 respondents opted to answer this question on early intervention or support services. This included 115 autistic people and 238 family members or carers of autistic people. The problems experienced were coded into 16 categories, which fall under the following broad areas:

• Difficulty accessing trained and neurodiversity affirming services and health professionals providing early intervention and support, leading to long wait times
• High costs associated with accessing services
• Lack of good quality support and therapy options
• General lack of understanding and awareness about autism leading to late detection and diagnosis of autism
• Access to accurate information about the available services and the choice of picking the intervention
• NDIS process is complex to navigate, and their staff are not knowledgeable about the needs of autistic people.

Table 8 ranks the 10 problems that autistic people experience in relation to the early intervention service (based on the survey responses). The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem. Note that respondents often identified within multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the number of respondents in subgroups exceeds the total number of all respondents.

Of note is that these data show that approximately:

1 in 3 respondents highlighted that there is a long waitlist to access early intervention services.

1 in 5 respondents expressed there is a lack of early intervention services and trained staff.

Table 8: 10 most frequently reported problems experienced by autistic people and their family/carers in relation to early intervention and support services

Note. *all other groups that have not been identified separately

3.2.1.2 Factors causing the problems experienced by autistic people in relation to early intervention and support services

A total of 351 respondents opted to answer this question on early intervention. This included 121 autistic people and 170 family members or carers of autistic people. The factors that respondents felt were causing or leading to the problems experienced by autistic people with early intervention and support services were coded into 12 categories, falling under six broad areas:

• Lack of staff trained in delivering early intervention
• Limited available financial support
• NDIS restrictions and unknowledgeable staff
• Community’s lack of awareness of autism
• Lack of access to early intervention and support services for families
• Lack of coordination between government agencies and the complexity of the diagnosis pathway.

Table 9 ranks the ten most commonly reported factors that respondents felt were causing the problems that autistic people experience in relation to early intervention and support services reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.

Importantly, these data show that approximately:

1 in 5 respondents stated that the problems were due to limited access to early intervention services and supports, and trained staff who could deliver them.

1 in 5 respondents highlighted that the problems were due to lack of funding and financial support for accessing early intervention services and supports

Table 9: 10 most frequently reported factors causing the problems experienced by autistic people and their family/carers in relation to early intervention and support services

Note. *all other groups that have not been identified separately

3.2.1.3 Factors that could prevent or reduce the problems experienced by autistic people in relation to early intervention and support services

A total of 190 respondents opted to answer this question on early intervention and support services. This included 57 autistic people and 132 family members or carers of autistic people. The factors that respondents identified as preventing or reducing the problems experienced by autistic people with early intervention and support services were coded into 21 categories. These categories fall under the following nine broad areas:

• More funding or financial support
• Better access to early intervention service providers and health professionals who are either neurodivergent or neurodiversity affirming
• More therapy options that are individualised
• More support for families
• More training and education about autism
• Listen to autistic perspectives
• Training NDIS staff about autism and support for families navigating the NDIS system
• More collaborative work between health professionals and updating their knowledge of autism
• More acceptance and awareness of autism.

Table 10 ranks the ten most commonly reported factors that respondents reported could prevent or reduce the problems that autistic people experience in relation to accessing early intervention and support services reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.

Importantly, these data show that approximately:

1 in 5 respondents stated that access to more funding and financial support could prevent or reduce the problems experienced by families or autistic people in relation to early intervention and supports

Almost 1 in 5 respondents identified that access to more therapy services, especially in remote places could prevent or reduce the problems experienced by families and autistic people in relation to early intervention and supports.

Table 10: 10 most frequently reported factors that could prevent or reduce problems experienced by autistic people and their family/carers in relation to early intervention and support services

Note. *all other groups that have not been identified separately

3.2.1.4 Factors that are working well, or have worked well, for autistic people in relation to early intervention and support services

Only 138 respondents (39%) replied to this question. This included 43 autistic people and 94 family members or carers of autistic people. From these responses, the factors that, when available, are reported to be working well, or have worked well, for autistic people in relation to early intervention and support services were coded into 19 categories, which fall under the following broad areas:

• Access to funding or financial support
• Good collaboration amongst health professionals
• Individualised therapy options
• Access to allied health professionals such as OTs for required assessments and interventions
• Supporting families and organisations delivering early intervention
• Families accessing online resources or support groups
• Education system and the wider community’s awareness of autism
• Nothing has worked, do not know.

Table 11 ranks the ten most commonly reported factors that respondents indicated to be working well, or have worked well, for autistic people in relation to early intervention and supports. The data are ranked from most frequently reported to least frequently reported factors that are working well across all respondents. The right-hand columns report what proportion of specific respondent groups reported this as a factor that is, or has, worked well.

Importantly, these data show that approximately:

1 in 5 respondents expressed that when families have access to funding and financial support, early intervention and supports work well for families and autistic people.

1 in 5 respondents stated that when there is good and clear communication between health professionals and families, early intervention and supports work well for families and autistic people.

Table 11: 10 most frequently reported factors that are working well, or have worked well, in relation to autistic people and their family/carers accessing early intervention and support services

3.2.2 Umbrella review: Early intervention and support services

The focus of this review was on early intervention approaches for children on the autism spectrum. It is based on the findings from the umbrella review conducted by Trembath et al. (2022). The terms used for the searches, and the number of articles identified, screened, and included, are provided in Appendix D-2 and Appendix D-3. The final umbrella review reports on 58 systematic reviews, five of which were led by Australian authors. Thirty-three reviews were published between 2018 and 2020, and 25 were published between 2010 and 2017.

The information and findings from the included reviews are summarised in the subsections below. When reporting on the number of people or participants in the review, this will be represented as $n =$ [number of participants]. When reporting on the number of reviews that considered a topic, this will be represented as $k = [number of reviews]$.

3.2.2.1 Participants within included reviews

Of the 58 systematic reviews included, 53 provided details about the total number of participants. In all, there were 41,375 participants, with the sample sizes of individual studies ranging from 66 to 6,240 participants. Forty-four systematic reviews indicated the age range of participants, which spanned from 4 months old to 65 years old. Within these studies, 81% ($n = 11,218$ of $n = 13,482$) were identified as male and 17% ($n = 2,264$) as female.

3.2.2.2 Quality of included reviews

The quality of the included systematic reviews was assessed using the Critical Appraisal Checklist for Systematic Reviews and Research Syntheses (CACSRRS) tool that assesses the methodological quality of a systematic review. The maximum score is 11, which indicates a very “high quality” systematic review. Systematic reviews including meta-analyses were scored between 6 and 11 (mode = 10), while systematic reviews with only a narrative review of the literature scored between 4 and 9 (mode = 7). Four systematic reviews scored the maximum points, 27 received a high summary rating, and 31 received a low summary rating.

3.2.2.3 Topics of included reviews

All 58 systematic reviews reported data on the effect of early intervention approaches on children on the autism spectrum. However, there were 34 practice/category-focused systematic reviews that organised findings into nine intervention areas. These were behavioural interventions ($k$ = 8), developmental interventions ($k = 5$), naturalistic developmental behavioural interventions (NDBIs) ($k = 7$), sensory-based interventions ($k = 9$), Treatment and Education of Autistic and related Communications Handicapped Children (TEACCH) ($k = 2$), technology-based interventions ($k = 11$), animal-assisted interventions ($k = 7$), cognitive behavioural therapy (CBT) ($k = 4$), and other interventions ($k = 2$). The interventions were grouped and presented according to the following topic areas discussed in table 11: (a) intervention effect on child outcomes, (b) intervention effects on family outcomes, (c) influence of delivery characteristics, and (d) influence of child characteristics.

3.2.2.4 Research gaps

The umbrella review identified a number of research gaps, which are summarised in Table 12. In brief, current literature is largely inconclusive about the effectiveness of various categories of

early intervention strategies. There is a need for high quality research that considers the impact of delivery method and individual characteristics on outcomes, and that reports on adverse effects from interventions. There is also a need for the development of validated tools that holistically assess intervention or support outcomes for child and family. Likewise, there is an urgent need for research with culturally and linguistically diverse samples that are co-produced, to allow for a more authentic representation of the experience of autistic children and their caregivers and to better guide the development of meaningful interventions.

Table 12: Umbrella review findings for early intervention and supports for autistic children

3.2.3 Policy and guideline review

The National Guideline for Supporting the Learning, Participation and Wellbeing of Autistic Children and their Families in Australia (2022) is the focus of this policy review. The Guideline speaks to many of the critical areas of gaps identified in the literature that can be addressed in clinical practice (see Table 13).

Table 13: Policy review findings for early intervention and supports for autistic children

3.2.4 Community views, research evidence, and policy/guideline alignment and gap analysis

As well as the research gaps identified as part of the research landscape mapping, the gap analysis (see Figure 3 for process) allows comparison of the current state (predominantly based upon the community views analysis but also some findings of the umbrella review and policy review) to an improved future state (based upon community views around what is working well, policy review, and some umbrella review findings).

Figure 3: Gap analysis: Current to improved future state

The early intervention and supports gap analysis outlines steps that can be taken to improve the experiences of autistic people and better meet their needs as they relate to early intervention and supports.

3.2.4.1 There needs to be improved access to early intervention services or support services for autistic children

Current state

The community views survey highlighted that the primary concern for parents and families of autistic children related to the lengthy wait time to access early intervention services and supports, which they linked to the lack of trained professionals that can provide early intervention services. The findings from the community views survey indicate that this creates a bottleneck situation

resulting in some children waiting months or even years to be seen, by which time the benefits of early intervention may be lost. The problems related to access to early intervention services were not captured in the research landscape mapping.

Improved future state

The community views survey suggested that having more trained early intervention providers would help to improve the accessibility of early intervention and support services for autistic children. In the National Guideline for Supporting the Learning, Participation and Wellbeing of Autistic Children and their Families (2022) document in the policy review the provision of universal accessibility to early intervention services and supports for autistic children is highlighted in several recommendations.

Steps that can be taken to move from the current to the improved future state include:

• Further consultation with key stakeholders (e.g., health practitioners, autism community, autism experts, relevant policymakers) to identify and develop strategies that can expand pathways for early intervention and supports for autistic children in the context of limited human resources
• Provide incentive schemes for practitioners working in early intervention and supports to boost interest in the area for potential practitioners and retain existing ones
• Further consultation and partnership with universities to identify and implement strategies that may build student interest and training in areas of study related to early intervention.

3.2.4.2 Families of autistic children need to be better supported to help them better understand autism and provide optimal care to autistic children

Current state

The community views survey pointed out that parents and families of autistic children often lack knowledge and understanding of autism and may be unsure of how to navigate the pathways for early intervention and supports. The community views survey indicated that often it is difficult for parents or families to find clear and correct information about autism and available resources and supports to be able to properly advocate for their autistic children.

Improved future state

The community views survey revealed that healthcare providers who were thorough in their assessment and reporting and who communicated clearly worked well for them.

Steps that can be taken to move from the current to the improved future state include:

• Co-development of simple and user-friendly informational guides that build awareness and sensitise parents and families of autistic children (and other supporters) about autism and include pathways to care, steps involved in accessing care, and listing of autism support entities. This can be made accessible through relevant government and non-government bodies and partners (e.g., NDIA, NDIA approved practitioners, autism support entities)
• Educate parents and families of autistic children about the rights of autistic children as well as the policy guidelines related to early intervention to help them to advocate.

3.2.4.3 Early intervention and support services need to be made more affordable for families of autistic children

Current state

The cost of services and inadequacy of funding was highlighted as a high priority concern for parents and families of autistic children in the community views survey. The community views survey highlighted that parents and families of autistic children felt that limited funding support available for early intervention and support services was prohibitive in allowing them to access these services for their autistic children. The affordability of early intervention services was not captured in research landscape mapping but is identified as a major problem for parents and families of autistic children, especially for those who lack financial stability or who have multiple children with special needs.

Improved future state

The community views survey revealed that parents and families of autistic children believed that NDIS funding works well when there is flexibility in how it can be utilised for early intervention services. The availability of affordable early intervention and supports is highlighted as a key component of access in the policy the National Guideline for Supporting the Learning, Participation and Wellbeing of Autistic Children and their Families (2022). The NDIS procedural guidelines for early intervention support the community views survey indicating that funding is available for autistic children but indicate that the level of funding support is based on an assessment of need made by NDIS staff.

Steps that can be taken to move from the current to the improved future state include:

• Further consultation with the autistic community about the challenges they experience with accessing government funding support with an aim to (a) revise, simplify, and streamline the processes; and (b) increase government subsidies where warranted
• Work towards increasing the availability of publicly funded early intervention and support services
• Build the capacity of parents and family members of autistic children to better advocate for the funding needs for their autistic children.

3.2.4.4 There needs to be an improvement in the level of autism knowledge and understanding of professionals working in the area of early intervention and supports

Current state

The community views survey identified a lack of awareness, knowledge, and understanding of autism that was neurodiversity affirming, as a major problem parents and families of autistic children and autistic children encountered. This problem was experienced across health practitioners, support services, and educators. The community views survey highlighted that this can be a distressing experience for autistic children as well as for parents and family members. The research landscape mapping did not capture issues related to autism knowledge and understanding in early intervention. Nevertheless, this was a recurrent problem identified in the community views survey.

Improved future state

The community views survey suggested that improving awareness and education that is neurodiversity affirming through research, evidence-based practice, and autism organisations works well in reducing this problem. The National Guideline for Supporting the Learning, Participation and Wellbeing of Autistic Children and their Families (2022) document in the policy review indicates that individuals or entities delivering early intervention services for autism have autism-specific training. It outlines that practitioners are to adhere to the guiding principles outlined in the policy in their approach to autistic children.

Steps that can be taken to move from the current to the improved future state include:

• Co-creation (actively involve the autistic community) of evidence-based autism-specific training that is relevant and accessible to professionals involved in early intervention and supports (such as early intervention practitioners, educators, and relevant NDIA staff). This training can be incorporated as components of standard training as well as included in annual professional development training packages and can be mandated or recommended in policy
• Provide and promote avenues for parents and families of autistic children to officially advocate as well as raise concerns about early intervention and support service providers who explicitly violate policy guidelines for early intervention.

3.2.4.5 There needs to be an expansion in the range of therapeutic services and quality of care available to autistic children

Current state

The community views survey highlighted that parents and families of autistic children need to be better included in the therapeutic decision-making and intervention process and offered a wider range of therapeutic options. This aligns with the research landscape mapping findings which indicated that many different types of therapeutic interventions offer positive outcomes for skill development in autistic children. Parents and families of autistic children also pointed out that they experience challenges accessing quality therapy with neurodiversity affirming therapists. However, there was an absence of research that considered the effects of clinician characteristics on the quality of early intervention care provided to autistic children in the research landscape mapping.

Improved future state

In the community views survey, parents and families of autistic children indicated that having flexibility in being able to access alternative therapies (such as music, animal) or therapeutic options that are individualised, consistent, and child and family-centred works well for them. This aligns with the National Guideline for Supporting the Learning, Participation and Wellbeing of Autistic Children and their Families (2022) document in the policy review which outlines that early intervention for autistic children should be individualised, child and family centred, parent and child affirming, and neurodiversity affirming.

Steps that can be taken to move from the current to the improved future state include:

• Provide consultation between the autism community and relevant early intervention professionals to assess community needs alongside strength-focused, evidence-based therapies that can be accepted as alternative therapeutic options. Once identified, these therapies can then be considered for approval by the NDIA as funded alternative therapeutic options
• Increase accountability measures (e.g., through more frequent auditing) for early intervention providers approved by the NDIA to improve adherence to policy guidelines related to early intervention
• Currently, research focuses primarily on effectiveness of intervention modalities for children. However, there is a paucity of research that explores the experiences of autistic children and their family members accessing early intervention services, quality of care, and the effect of clinician characteristics on child outcomes. Research in these areas may help to identify additional enablers and barriers to positive outcomes for autistic children as well as informing the development of strategies that can improve early intervention services.

3.3 Education

The community views survey asked about primary, secondary, and post-secondary education within the one domain. However, because the research and policy differ between primary/secondary and post-secondary education, individual research reviews and policy reviews have been conducted for primary/secondary (Sections 4.3.2, 4.3.3) and post-secondary settings (Sections 4.3.5, 4.3.6). The education domain gap analysis, which covers both primary/secondary and post-secondary, is then presented in section 4.3.7.

3.3.1 The “1,000 Insights” community views survey

A total of 866 respondents answered at least one of the questions on education. This included 373 autistic people, 504 family members or carers of autistic people, and 184 education staff. The 10 most frequently reported responses (where applicable) are reported within this section. However, the full list of response codes for each question within the education domain is available in Appendix E-1.

The tables for each question describe the response categories (with example participant responses) in order from the most frequently reported to the least frequently reported. For each category, percentages are provided to indicate the proportion of a respondent group whose response reflected the specific category. These groups are: (a) the entire sample (i.e., everyone), (b) autistic people, (c) family members/caregivers of autistic people, (d) education professionals, and (e) all respondents who are not represented in one of these groups.

NB. Whilst the survey informed respondents that education included post-secondary educational settings, the majority of the responses spoke about school, therefore focussing on the primary and secondary setting.

3.3.1.1 Problems experienced by autistic people in relation to education

A total of 866 respondents opted to answer this question on education. This included 373 autistic people and 504 family members or carers of autistic people. The problems experienced were coded into 16 categories, which fall under the following 10 broad areas:

• Lack of autism knowledge or training held by staff working in educational settings
• Physical environment is not supportive of autistic students
• Misalignment between the needs of autistic students and the instruction and assessment provided at school
• Systemic expectations of schools (e.g., rules, routines, attendance requirements) mean that it is hard for schools to be genuinely inclusive for autistic students
• Curriculum is based on neurotypical standards which may not be suitable for (or insufficiently adjusted to) the needs of autistic children
• Social elements of school, including peer relationships and bullying
• Focus on, or misinterpretation of behaviour and the use of behaviourally based strategies
• School has an impact on the mental health and identity of autistic students
• Communication styles and preferences of autistic people are not well-understood

• Lack of patience, empathy, care, or understanding (including ableism, mistreatment, stigma, and discrimination) of autistic students in educational settings.

Table 14 ranks the 10 categories of problems that autistic people experience in relation to education. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem. Note that respondents often identified within multiple groups (e.g., autistic and a parent/caregiver of an autistic child), so the total of the subgroups exceed the total number of all respondents.

Of note is that these data show that approximately:

3 in 10 respondents highlight that the lack of teacher awareness, knowledge, and/or experience in autism (and broader neurodiversity), its heterogeneity, and associated needs impact autistic people’s access to education.

1 in 4 respondents report that the environment is not designed for autistic students and/or is not sensory friendly.

Table 14: 10 most frequently reported problems experienced by autistic people in relation to education

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3.3.1.2 Factors causing the problems experienced by autistic people in relation to education

A total of 813 respondents opted to answer this question on education. This included 373 autistic people and 483 family members or carers of autistic people. The factors that respondents felt were causing or leading to the problems experienced by autistic people within education were coded into 19 categories, which fell under the following 15 broad areas:

• Teacher knowledge and attitudes towards autism, including a lack of understanding learning needs and negative perceptions of autistic students
• Lack of training in autism via university and/or professional development
• Education systems are designed for neurotypical children and the inclusion of autistic students is not prioritised
• Funding and resources for autistic students’ educational needs are insufficient, difficult to access, and poorly distributed
• School environments are not designed for inclusion of autistic students
• Accommodations and supports for autistic students are insufficient
• Overstretched staff and resources, including classes being too large and teachers being overworked
• Teaching methods, learning activities, content, or assessment may not be suitable for autistic children, or accommodating of their needs
• Lack of society or community education about, or acceptance of, autism
• Lack of understanding of the heterogeneity of autism in terms of profile and needs
• Peers/others lack understanding of autistic social styles and preferences
• Schools are not communicating/collaborating with allied health professionals and/or disability services
• Schools are often focused on behaviour and the use of behaviourally based strategies
• Support is lacking for undiagnosed autistic students, and diagnosis is delayed by wait times and teachers’ inability to recognise diverse autistic presentations (e.g., in females)
• Autistic students mask or conform to neurotypical standards.

Table 15 ranks the 10 most commonly reported factors that respondents felt were causing the problems that autistic people experience in relation to education reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.

Importantly, these data show that approximately:

• 1 in 4 respondents stated that the problems were due to educators and educational leaders lacking awareness and understanding about autism and associated needs.
• 1 in 4 respondents reported that the problems were due to a lack of training in autism via university and/or professional development.

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Table 15: 10 most frequently reported factors causing the problems reported by autistic people in relation to education

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Note. *all other groups that have not been identified separately

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3.3.1.3 Factors that could prevent or reduce the problems experienced by autistic people in relation to education

A total of 788 respondents opted to answer this question on education. This included 318 autistic people and 459 family members or carers of autistic people. The factors that respondents identified as preventing or reducing the problems experienced by autistic people in relation to education were coded into 18 categories. These categories fall under the following 11 broad areas:

• Increasing awareness and knowledge of autism across the education system
• Increasing and improving funding and resources to provide autistic students with the staff and environment they need for an equitable learning experience
• Ensuring education is informed by autistic teachers, consultants, policy/curriculum planners, and leaders in education
• Ensuring schools are designed to minimise sensory overwhelm and include spaces that autistic people feel safe
• Reducing class sizes and increasing the number of teachers and aides/support staff in classes
• Changes to curriculum, instruction methods, assessment methods, and pedagogy to support autistic students and their learning needs
• Increasing collaboration, communication, and supportive relationships between autistic students, parents, educators, and allied health professionals
• Enhancing provision of accommodations and supports, including increasing flexibility around delivery and accommodations
• Changes at government/sector level including improved communication, training, and multiple options for education settings designed to support autistic students
• Increasing student access to autism diagnosis by improving teacher identification of autism, waiting list times, cost, and understanding of different autism presentations
• Using collaborative and supportive behaviour strategies and understanding reasons for behaviours.

Table 16 ranks the 10 most commonly reported factors that respondents reported could prevent or reduce the problems that autistic people experience in relation to education reported above. The data are ranked from most frequently reported to least frequently reported problems across all respondents. The right-hand columns report the proportion of specific respondent groups that identified this as a problem.

Importantly, these data show that there was a clearly predominant factor highlighted by respondents:

• Over 2 out of every 5 respondents identified increasing pre-service and in-service training on autism for all school staff as a factor that could prevent or reduce the problems experienced by autistic people in relation to education.

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Table 16: 10 most frequently reported factors that could prevent or reduce problems experienced by autistic people in relation to education

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Note. *all other groups that have not been identified separately

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3.3.1.4 Factors that are working well, or have worked well, for autistic people in relation to education

A total of 702 respondents opted to answer this question on education. This included 285 autistic people and 418 family members or carers of autistic people. The factors that, when available, are reported to be working well, or have worked well, for autistic people in relation to education were coded into 12 categories, each falling under its own broad area:

• When educators have knowledge about autism, value autistic students, and treat autistic students well
• When accommodations are made and autistic students are supported at school
• When the curriculum, pedagogy, and instruction methods are tailored to autistic students’ needs
• When attitudes or approaches to supporting autistic students are positive or neurodiversity affirming
• When education institutions, health and disability professionals, autistic adults, and families collaborate to support and listen to the autistic student
• When the physical environment is adapted to autistic sensory needs
• When learning delivery structures, modes, and locations suit the autistic student
• When autistic students’ education is supported by policies, laws, leadership, and/or funding
• Nothing/not much/unsure
• When the education system works for the autistic student
• When class sizes are small and autistic students have 1:1 support from staff
• When autistic students are supported to form strong social relationships at their place of education, free from bullying and criticism.

Table 17 ranks the 10 most commonly reported factors that respondents reported to be working well, or have worked well, for autistic people in relation to education. The data are ranked from most frequently reported to least frequently reported factors that are working well across all respondents. The right-hand columns report what proportion of specific respondent groups reported this as a factor that is working, or has worked well.

Importantly, these data show that approximately:

• 1 in 3 respondents stated that one thing working well in education for autistic people is when educators have knowledge about autism, value autistic students, and treat autistic students well..
• Almost 1 in 4 stated that when accommodations are made, and autistic students are supported at school, education works well for autistic students.

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Table 17: 10 most frequently reported factors that are working well, or have worked well, for autistic people in education

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Note. *all other groups that have not been identified separately

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3.3.2 Umbrella review: Primary and secondary education

Autism CRC project Identifying autistic learners’ educational strengths, needs and challenges: Supporting engagement and removing barriers in Australian schools (due for completion in July 2023) has conducted comprehensive scoping review on seven topic areas related to education:

i) Academic and learning considerations ii) Built environment and learning space design considerations iii) Student well-being considerations iv) Co-occurring considerations v) Identity considerations vi) Family and community considerations vii) Inclusive practices.

This umbrella review therefore focused upon teachers’ knowledge of and attitudes towards autism. This included their perception and experience of autism-specific training. The need for this was based upon the findings of the previous umbrella reviews in this document, many of which have consistently highlighted autism knowledge and training on autism as critical for positive outcomes. The findings of this umbrella review are synthesised in Table 18.

The focus of this review was on teacher factors related to autism that could impact learning (e.g., attitudes, knowledge, training), rather than on specific interventions to support learning outcomes. The terms used for the searches and the number of articles identified, screened, and included are provided in Appendix E-2 and Appendix E-3. The final umbrella review reports on 12 systematic reviews, two of which were led by Australian authors. All of the systematic reviews were written in the last five years. The 12 systematic reviews collectively report on 285 individual studies.

The information and findings from the included reviews are summarised in the subsections below. When reporting on the number of people or participants in the review, this will be represented as $n = [\text{number of participants}]$. When reporting on the number of reviews that considered a topic, this will be represented as $k = [\text{number of reviews}]$.

3.3.2.1 Participants within included reviews

Of the 12 reviews, only six provided details on the number of teachers who participated. In total, these six reviews included 20,236 teachers as participants, with sample size for individual studies ranging from 2 to 866 ($M = 3,372.67; SD = 2,065.19$). Only four systematic reviews provided information on the gender of the teachers; most of the teachers in these reviews were female (average percentage = 76.60%).

3.3.2.2 Quality of included reviews

The quality of the included systematic reviews was assessed using the JBI Critical Appraisal Tool for Systematic Reviews. This tool assesses the methodological quality of a systematic review. The maximum score is 33, which indicates a very high-quality systematic review. The average quality score for the 14 included systematic reviews was 25.21 (76.29%), with the quality score ranging from 19 to 30.

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3.3.2.3 Topics of included reviews

The 12 reviews identified in the area of teacher attitudes, knowledge, training on autism covered three topics; some reviews discussed multiple topics. These were the educational professionals’ level of knowledge of autism and attitudes towards autistic students ($k = 9$); the impact of educational professionals’ level of knowledge of autism and attitudes towards autistic students ($k = 4$); and autism-specific training for educational professionals ($k = 7$).

3.3.2.4 Research gaps

The 12 reviews identified a number of research gaps, which are combined with research gaps identified by the authors of this report and summarised in Table 18.

The focus of this umbrella review was around teacher knowledge and attitudes. The research highlighted how teachers, autistic students and their family members feel that educational staff have limited knowledge of autism and that this is impacting the ability for every autistic student to have the accommodations and supports that they would benefit from. This highlights a need for a large scale teacher knowledge and attitudes survey in Australia, with a companion survey for autistic students assessing the impact of their teacher’s knowledge on their academic outcomes and attendance. However, this work should not delay research into improving teacher knowledge of autism and attitudes towards autistic students through co-developed and co-delivered training. As with any training, the impact of which should be assessed through subjective and objective methods.

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Table 18: Umbrella review findings for primary and secondary education

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Note: Co-development in this context means with the autistic and autism community and with people who will receive the training (i.e., educational staff).

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3.3.3 Policy and guideline review: Primary and secondary education

The separate Autism CRC project Identifying autistic learners’ educational strengths, needs and challenges: Supporting engagement and removing barriers in Australian schools (due for completion in July 2023) identified state/territory inclusive education policy documents and analysed with regard to:

i) the UNESCO (2017) Guide for Ensuring Inclusion and Equity in Education, ii) the social model of disability, iii) definition of inclusive education (CRPD/GC4), iv) context.

So that the gap analysis between research and policy could be undertaken, an overview of state and federal education policy as it relates to autism and broader disability is provided below. The policy overview is summarised in Table 19.

The policies and guidelines summarised were produced at a state and territory level, excepting three national level policies. State and territory level policies were produced by state/territory governments, and by state/territory Departments of Education. Information within the identified policies relevant to autistic individuals and/or people with disability is summarised below and in Table 19.

Publication dates were provided for 78% ($k = 25$) of the policies included in this review ($k = 32$). Of these 25 dated policies, 84% ($k = 21$) were published in the past five years (2018–2023). The overall publication range for the 25 dated policies was 2016–2023. Information about autism specifically was included in 34% of policies ($k = 11$), while information about disability more generally was included in 97% of policies ($k = 31$). Both autism and disability were discussed in 31% of policies ($k = 10$). Aside from the three national level policies, the policies were distributed by state/territory as follows: seven from Queensland, five from the Australian Capital Territory, four from New South Wales, three from Western Australia, three from South Australia, two from the Northern Territory, one from Tasmania and four from Victoria. While additional policies were considered during this review, only those that provided: a) information relevant to either autistic people or people with disability; and b) additional unique information over and above that already summarised in Table 19, were included.

Of note is that policies specific to autism produced by the Australian Government Department of Education were not identified during our policy overview. The three national level policies included in this review produced by the Australian Government did not contain information about autism. Therefore, no national level autism-specific education policies were identified. State and territories identified as producing only one such policy include: Queensland, the Australian Capital Territory, New South Wales, South Australia, the Northern Territory and Tasmania. Two Western Australian policies containing autism-related information were identified, and three Victorian policies. The single Tasmanian policy was produced by the Tasmanian Government. One policy produced by the Tasmanian Government Department for Education, Children and Young People (DECYP) (Department of Education Strategic Plan 2022–2024) was identified but was found not to contain information on autism or disability and is not included in this review.

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There is, therefore, a paucity of autism-specific educational policies within Australia to guide educational practice. Additional policies either: may not be available, may only be accessible to employees, or may be difficult to access or find. If the latter, stakeholders, such as education professionals working in Tasmania for DECYP, may have difficulty applying appropriate policies in their work with autistic students.

3.3.3.1 Policy and guideline relevant to autistic people

The 11 policies including information about autism contain the following key points (see Table 19 for more information):

• Autistic students need reasonable adjustments/accommodations at school and require funding for these adjustments/accommodations. While schools cannot diagnose autism, they can impute autism as a means to providing students with adjustments/accommodations, if this is required
• Several states offer autistic students access to small groups or specialist/intensive programs, usually as streams/satellite classes within mainstream primary and secondary schools. Where information about these programs is provided, such as in the NT Review of Policy and Practice for Students with Additional Needs, content reportedly focuses on autistic students’ social skills, routines and repetitive behaviours, sensory needs and learning styles rather than such classes being for the benefit of academic or well-being outcomes
• Policies from several states emphasise the importance of building capacity/expertise of teachers to educate autistic students, through: – Professional learning – Targeted resources – Collaboration with Autism consultants.
• Data on autistic students suggests they: – Are less likely to finish Year 12 than non-autistic students – Often change schools to have their educational needs met – Are more likely to disengage from school than non-autistic students
• Only one policy document, the Victorian Autism Education Strategy, specifically mentions inclusion strategies for autistic students, such as: celebrating the diversity autistic students bring to school communities, supporting the well-being of autistic students, and collaborating with autistic students and their families.

3.3.3.2 Policy and guideline relevant to people with disability

The 30 education policies including information about disability contain the following key points (see Table 19 for more information):

• Essential to the well-being and learning outcomes of students with disability is that parents, students and teachers collaborate in equal partnership, and are all involved in decision-making about the students’ education. In particular, students with disability need to have choice and control over their educational experiences, and clear pathways by which to raise concerns/complaints

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• Schools should be inclusive environments, free of discrimination, where all staff understand and welcome diverse students, including those with disability. Schools should actively and intentionally foster positive beliefs and attitudes towards disability
• Schools must be equitable, and therefore ensure students with disability can access learning, events, activities, and buildings on the same basis as students without disability
• Teachers need more support, professional learning and resources to meet the educational needs of students with disability, particularly with regards to providing differentiated and flexible teaching approaches
• Students with disability, their families and representatives, have reported numerous barriers to school inclusion, such as: – Schools not fully embracing inclusion – Teachers needing more resources and training to create inclusive and equitable learning environments – Students not receiving appropriate supports without a medical diagnosis
• There needs to be a shift within schools from a deficit-based understanding of disability, to a strengths-based understanding, where the perspectives of students with disability are elevated and valued
• There is little consensus or research on how to measure learning outcomes in students with disability. In addition, NAPLAN data is not published for students with disability
• There is a need for stronger, and more collaborative relationships between schools and the NDIS.

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