Inquiry into Autism by the Australian Parliament

We have had an incredible reaction to the online survey, with more than 3,884 responses.
Last Modified on 9 September 2020

The Alliance is proud to share its comprehensive submission to the Senate Select Committee on Autism Inquiry. It has been drafted to reflect the priorities of our partners and is built on the voices of the 3,884 autistic people and their families who contributed to the ground-breaking survey of the Australian autism community.

Our submission provides the Committee, and by extension the Parliament of Australia, with deep insights into the lived-experience of autistic people and offers considered and strategic options to reform key parts of the service delivery framework.

 

Submission to the Senate Select Committee on Autism

Introductory overview, Senate Select Committee on Autism

We thank our partners and in particular the participants of the survey whose voices run through the submission.

Results from consultation survey to inform a submission into the Federal Senate Select Committee on Autism

View the Report

The Alliance partnered with leading autism researcher Professor Sandra Jones at the Australian Catholic University has developed one of the most comprehensive pictures of the wellbeing and voices of Australian autistic people and their families to-date.

View the report.

The Report, tells a unique story of how autistic people and their families live, work and learn in Australia. With focuses covering diagnosis, NDIS, education, employment, housing and independence, justice, healthcare, mental health, social and recreational activities and advocacy, the Report highlights glaring gaps in key state and federal supports and services. It also provides a positive roadmap for reform.

Our partners have built upon this landmark report and the voices of the autism community in our advocacy work, primarily through the Senate Select Committee on Autism Inquiry, as well as other related state and federal consultations.

We gratefully thank everyone who contributed to the survey and whose voices are helping to drive positive change for autistic people across Australia.

 

Our respondents

3,884 completed surveys:

  • 769 autistic adults responding on behalf of themselves; and
  • 3115 parents/carers responding on behalf of an autistic person they care for
  • (including 257 autistic adults who are also parents/carers of autistic people and completed the survey in both contexts)
Basic Demographics

Autistic Adults

  • 565 (73.5%) female
  • 59.3% aged 25-44
  • 87.1% born in Australia
  • 91.7% do not speak another language at home

Parent or carer on behalf of autistic person

  • 2219( 71.2%) responding on behalf of a male
  • 2737(87.8%) responding on behalf of a person aged under 18 years.
  • 95.1% born in Australia
  • 93.1% do not speak another language at home
Diagnosis

Autistic Adults

  • 66.7% had a formal autism diagnosis and a further 9.6% were in the process of getting a diagnosis
  • The majority were diagnosed as adults (77.2%)
  • 77.0% reported waiting less than 12months for a diagnosis
    • BUT 79.2% report that the diagnostic process was undertaken via the private system

Parent/carer on behalf of autistic person

  • Almost all parents/carers were responding on behalf of a person with a formal autism diagnosis (96.2%) or in the process of getting a diagnosis (2.6%)
  • 75.2% reported waiting less than12months for a diagnosis
    • BUT 69.8% report that the diagnostic process was undertaken via the private system
Advantages of Diagnosis (top 5)

Autistic Adults

  • 91.9 Helped me understand myself
  • 82.5 Helped me understand my needs
  • 80.7 Helped me deal with feelings of being different/ inadequate
  • 75.4 Helped me to explain my needs to ithers
  • 69.3 Helped me find ways to improve my life/ situation

Parent or carer on behalf of autistic person

  • 90.7 Allowed them to access support
  • 49.6 Helped them understand themselves
  • 45.2 Helped me/ them understand their needs
  • 40.4 Helped them deal with feelings of being different/ inadequate
  • 39.1 Helped me/ them find ways to improve their life/ situation

 

Disadvantages of Diagnosis (top 5)

Autistic Adults

  • 52.6 People making assumptions about me based on myths (e.g. autistic people are good at maths, have a special talent)
  • 43.9 People assuming I am incompetent / incapable of things
  • 41.4 Experiencing stigma and/or discrimination
  • 35.7 Makes me concerned that my other health needs will be overlooked/overshadowed
  • 25.7 Being labelled / defined solely in terms of my autism

Parent or carer on behalf of autistic person

  • 61.0 People making assumptions about them based on myths (e.g. autistic people are good at maths, have a special talent)
  • 52.4 People assuming they are incompetent / incapable of things
  • 48.0 Experiencing stigma and/or discrimination
  • 47.0 Being labelled / defined solely in terms of their autism
  • 24.3 Makes me/them feel that I can’t change my situation/ have less options
NDIS

Autistic Adults

  • 263 (34%) had applied to the NDIS for support:
    • 168 (63.9%) had received funding
    • 42 (5.2%) were deemed ineligible
    • 53 (6.6%) had an application pending
  • 506 (66%) had not applied
    • 168 (33.2%) thought they would not be eligible
    • 115 (22.7%) did not think they needed support
    • 80 (15.7%) needed information or support to apply

Parent/carer on behalf of autistic person

  • 2711(87%) had applied to the NDIS for support:
    • 2475 (91.3%)had received funding
    • 107(3.9%) were deemed ineligible
    • 129 (4.8%) had an application pending
  • 404 (13%) had not applied
    • 90 (22.3%) thought they would not be eligible
    • 54 (13.4%) did not think they needed support
    • 109(26.9%) needed information or support to apply