Chapter 1


On 27 November 2019, the Senate resolved to establish a Select Committee on Autism to inquire into and report on the services, support and life outcomes for autistic people in Australia and the associated need for a National Autism Strategy, with particular reference to:
current approaches and barriers to consistent, timely and best practice autism diagnosis;
the prevalence of autism in Australia;
misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services;
international best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity;
the demand for and adequacy of Commonwealth, state and local government services to meet the needs of autistic people at all life stages;
the interaction between services provided by the Commonwealth, state and local governments, including:
health and mental health,
justice, and
the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of autistic people;
the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including:
autism understanding within the NDIS,
the utility of the Early Childhood Early Intervention Pathway for autistic children,
the ability of the NDIS to support autistic people with complex needs, including those transitioning from prison settings, and
the adequacy and appropriateness of supports to empower autistic people to participate in the NDIS planning process, and exercise self-determination through choice and control over their support services;
the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy;
the adequacy of funding for research into autism;
the social inclusion and participation of autistic people within the economy and community;
the capacity and sustainability of advocacy, self-advocacy and self-determination supports for autistic people, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities;
any bill that relates to matters within the scope of this inquiry that is referred to this committee; and
any other related matters.1
The committee was to report on or before the first sitting day of October 2021.
Following a resolution of the committee on 2 February 2021, and in accordance with the motion agreed by the Senate on 23 March 2020,2 the reporting date for the inquiry was extended to the last sitting day of March 2022.

Conduct of the inquiry

The committee advertised the inquiry on its website and wrote to relevant stakeholders inviting them to make submissions by 14 April 2020. The committee subsequently extended the deadline for submissions to 25 June 2020. Submissions continued to be accepted after this date. The committee received [168] submissions, as well as additional information and answers to questions on notice, which are listed at Appendix 1.
The committee held nine public hearings:
Canberra – 27 July 2020;
Sydney – 28 July 2020;
Adelaide – 16 November 2020;
Melbourne – 11 February 2021;
Melbourne – 12 February 2021;
Brisbane – 3 March 2021;
Sydney – 15 April 2021;
Launceston – 28 April 2021; and
Hobart – 29 April 2021.
A list of witnesses who appeared at these hearings is available at Appendix 2.
The committee also conducted site visits to Springbank Secondary College on 16 November 2020 (Adelaide, South Australia), WithYouWithMe on 26 November 2020 (Sydney, New South Wales), and the Olga Tennison Autism Research Centre on 14 April 2021 (Melbourne, Victoria).
Links to public submissions, Hansard transcripts of evidence and other information published by the committee for this inquiry are available on the committee's website.

Acknowledgements and references

The committee thanks those individuals and organisations who contributed to this inquiry by providing submissions and giving evidence at public hearings.
The committee regrets that travel restrictions related to the COVID-19 pandemic prevented the committee from meeting with as many people and organisations throughout Australia as it would have liked. The committee also recognises that videoconferencing is a poor substitute for learning about people's experiences face-to-face.
References in this report to the Hansard transcripts for the public hearings are to the proof Hansard. Page numbers may vary between proof and official Hansard transcripts.

Structure of the report

This report comprises 16 chapters, including this introductory chapter, with the remaining chapters set out as follows:
Chapter 2 provides a background on autism, the way it is diagnosed, its prevalence in Australia and the diversity of the spectrum.
Chapter 3 summarises information on life outcomes for autistic people.
Chapter 4 outlines the economic and social costs of failing to support autistic people.
Chapter 5 evaluates whether a National Autism Strategy should be developed.
Chapter 6 examines the adequacy of available services and supports for autistic Australians.
Chapter 7 looks at services and supports for specific groups of autistic people, including adults, females, disadvantaged and vulnerable cohorts, and families and carers.
Chapter 8 explores the current state of research and data collection.
Chapter 9 considers if current advocacy services are adequate.
Chapter 10 examines diagnostic services and current challenges to obtaining a consistent, timely and best-practice diagnosis.
Chapter 11 evaluates early intervention approaches and post-diagnosis support.
Chapter 12 considers ways to improve the education experiences and outcomes for autistic people.
Chapter 13 investigates employment outcomes for autistic people and how they might be improved.
Chapter 14 considers the interface for autistic people with health and mental health systems.
Chapter 15 looks at housing and accommodation services for autistic people.
Chapter 16 explores the over-representation of autistic people in the criminal justice system.

Language used in the report

Identifying language

The committee recognises that people use many terms when talking about autism. The committee is aware that there are people in the autistic community who prefer 'identity first language', people who prefer 'people first language', and people who use the terms interchangeably.
People first language seeks to put the person before their disability and avoid the disability becoming the primary, defining characteristic of an individual. For example, 'person with autism'. Identity first language reflects the belief that being autistic is a core part of a person's identity which cannot, and should not, be treated as separate. For example, 'autistic person'.3
The committee recognises there is no consensus as to which language should be used, and that each member of the autistic community will have their own opinion on terminology. The committee also understands that each person will have a preferred way of communicating and self-describing. The committee respects that language is an individual and highly personal choice.
In the context of this inquiry, the committee has used identity first language in its report in order to ensure consistency with the terms of reference.

Functioning labels

The committee acknowledges that language around needs and functioning is another area where there are differing views within the autistic and autism communities.
The committee acknowledges that functioning labels (for example, 'low functioning' or 'high functioning') may be used by clinicians, educators, parents, or autistic people. However, it notes that such labels are not official diagnostic terms, and generally tend to be used as qualifiers when people are trying to describe a particular kind of profile on the autism spectrum.4
Functioning labels may also be counterproductive as they can ignore the strengths and capabilities of someone labelled low functioning or fail to recognise the challenges faced by someone labelled high functioning.5
For this reason, the committee has chosen to use the terms lower or higher/complex support needs throughout the report, unless the terms low functioning or high functioning have been used in source material.


Lastly, the terms 'autistic community' and 'autism community' are used throughout the report and are distinct in meaning. Autistic community is used by the committee to refer solely to autistic people, while the term autism community refers to the broader community of autistic people, their families and carers, as well as autism organisations and others with a connection to autism.

  • 1
    Journals of the Senate, No. 30, 27 November 2019, pp. 944–946.
  • 2
    Journals of the Senate, No. 47, 23 March 2020, p. 1545.
  • 3
    Amaze, Talking about autism: guidelines for respectful and accurate reporting on autism and autistic (accessed 1 July 2020); Simon M Bury, Rachel Jellett, Jennifer R Spoor, and Darren Hedley, '"It Defines Who I Am" or "It's Something I Have": What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer?', Journal of Autism and Developmental Disorders, PMID: 32112234, 2020.
  • 4
    Autism Awareness Australia, Why we should stop using the term “high functioning autism”, (accessed 9 February 2022).
  • 5
    Amaze, Talking about autism : guidelines for respectful and accurate reporting on autism and autistic (accessed 1 July 2020).

 |  Contents  |