Australian Autism Research Council - Defining National Autism Research Priorities

Australian Autism Research Council (AARC)

The Australian Autism Research Council (AARC) was established to review and define national priorities for autism research and identify areas of research needed for the autistic and autism communities. The AARC operates under the auspices of Autism CRC.

AARC includes representatives of the autistic and broader autism communities, as well as service providers, health and education professionals, government program managers and policy makers, and researchers.

The current AARC has considered domestic and international commitments, and existing global and Australian surveys on autism research priorities. AARC identified seven broad research priority areas through this work, which was presented to the broader community in a draft report. We asked the community what was important to them through an online survey and submission process which received more than 1,000 responses. AARC considered the consultation outcomes, taking into account the mix of stakeholder views and has formed a list of 10 priority areas which will guide autism research into the future. We thank the community for your generous contribution to this process.

The Australian Autism Research Council has published a Report of the Australian Autism Research Priorities 2019

Read Report Read Appendices Read Snapshot

AARC Membership

In 2020, the AARC will be comprised of the following members:

  • Charlotte Brownlow
  • Shelly Dival
  • Melanie Heyworth
  • Katie Koullas
  • Wenn Lawson
  • Pam Macrossan
  • Malcolm Mayfield
  • Liz Pellicano
  • Rebecca Poulsen
  • Geraldine Roberston
  • Travis Saunders
  • Lizzie Smith
  • Samarra Toby

Terms of Reference


The objective of the AARC is to provide a regular and organised mechanism to:

  • consult on the state of autism research in Australia (community-led)
  • identify priorities for autism research in an Australian context
  • report on priorities for autism research in Australia
  • inform funding strategies for autism research in Australia

As the core principle for operation of the AARC, the delivery of these objectives will be community-led – by autistic individuals, their families and allies who provide services and support – for the benefit of those communities and the Australian community as a whole.


The AARC will be composed of no less than 8 and no more than 14 members.

Council membership is intended to be representative of the key stakeholder communities and will comprise:

  • At least 3 members on the autism spectrum
  • At least 1 parent or carer of a person on the autism spectrum (autism community)
  • At least 1 representative of an autistic or autism community advocacy organisation
  • At least 1 representative of a service organisation to the autistic community
  • At least 1 representative of the Australian autism research community
  • At least 1 representative of a Commonwealth Government department or agency delivering services to members of the autistic community, preferably with a broad portfolio view, e.g. disability, education and health

The membership term will be 2 years. Subject to the membership terms below, a member may be re-appointed to the Council for a further term.

Auspicing and Administration

The AARC will operate under the auspices of Autism CRC.

Management and operational support will be provided by Autism CRC, including the provision of the services of a Secretary to the Council.


Two members of the Council shall be appointed as Co-Chairs of the Council by the Council, that appointment subject to the ratification of the Board of Autism CRC.

At least one of the Co-Chairs is to be a member of the autistic community.

At least one of the Co-Chair positions is to be filled by an existing Member who has served at least 12 months on the Council.

Member guidelines

Initially, four members were invited by the Board of Autism CRC to form an AARC Executive Committee. The Executive Committee then invited all other positions on the AARC and all positions will be for an initial term to January 2020.

Members of subsequent Councils, the first of these from January 2020, will be appointed following an open nominations process. The nomination guidelines will be formulated by the outgoing Council and ratified by the Board of Autism CRC. Nominations shall be called for by no later than 15 October of the year prior to the January from which the new Council is to be appointed.

At least half of the membership positions on the AARC are to be called for nomination each year. Members from those positions can renominate, however at least half of the positions called for nomination should be filled by new candidates.

A person may be nominated or invited to be a member of the Council as an individual or as a representative of an organisation – in either case primarily being invited to represent at least one of the stakeholder communities identified above.

A member may resign by notifying the Co-Chairs of the AARC in writing.

A member may be removed from the AARC by a unanimous decision by the other AARC members, or by a resolution of the Board of Autism CRC, if that member is deemed to be impeding the achievement of any of the AARC objectives.

The Board of Autism CRC has the right of refusal over the proposed appointment of a member of the AARC.

Subject to Autism CRC being notified and not having refused a proposed appointment, the Council may invite someone to fill a vacancy according to these Terms of Reference.


Quorum for a Council meeting is half the number of members to the nearest whole number, plus 1.

The Council’s major output, a report on current priorities for autism research in Australia, requires written approval of at least 75% of the full membership of the AARC before submission to Autism CRC for publishing.

Council Meeting Protocol

The Council shall implement a meeting protocol that maximises the opportunity for members to participate, accounting for scheduling difficulties, and social and communication preferences. This protocol shall provide for:

  1. a detailed meeting agenda available via an online forum for access and contributions to be made by Council members, such as a message board
  2. the online meeting forum should be open for sufficient time to allow member contributions on agenda items, for example one week
  3. during the period that the online meeting is open, a real-time virtual meeting (e.g. videoconference or teleconference) should be held for those members wishing to contribute to the meeting considerations by that means, the proceedings of such being recorded and subsequently made available to all members through the online meeting forum
  4. At the completion of the meeting period, contributions to and outcomes on agenda items by Council members, received by any of the means provided, shall be collated as a record of the meeting and posted via a web link accessible by Council members

Council discussions are deemed confidential in nature.

Any formal external communications of AARC outputs will be agreed by the Council in accordance with the Terms of Reference.


The Council shall publish a report or update in November each year on autism research priorities relevant to the Australian context. This report shall build on the foundation of the Council’s previous report and will use a consultative process with the community to review and revise the outputs of the Council. That process should include:

The Council shall publish a report or update in November each year on autism research priorities relevant to the Australian context. This report shall build on the foundation of the Council’s previous report and will use a consultative process with the community to review and revise the outputs of the Council. That process should include:

  1. Seeking public feedback on the previous year’s report and autism research priorities;
  2. Canvassing international trends in autism research priorities
  3. Summarising advances in autism research
  4. Updating and reporting on autism research priorities in Australia, including gap analysis

Reports generated by the AARC shall be published by Autism CRC and be subject to the guideline principles applying to Autism CRC publications.

Autism CRC Board may refuse publication if the output is deemed to be inconsistent with the AARC objectives or the vision and mission of the Autism CRC. In such circumstances, Autism CRC will return the proposed publication to the AARC for further consideration and revision.


These Terms of Reference will be reviewed annually by the Council and any revisions submitted for approval to the Board of Autism CRC.

Guiding principles

The draft priorities for consultation were formulated under the following guiding principles:

Autistic people at the centre

The priorities should be focused on assisting autistic people to discover what they want for their own lives and supporting them to achieve their goals.

Inclusive of all autistic people

The priorities should reflect the full diversity of the autism spectrum, including autistic people living without formal diagnosis. Priorities should focus on challenges and issues and positive models of care being inclusive of: age, gender, LGBTIQA+, geography, ethnicity, co-occurring disability, socio-economic disadvantage, and Aboriginal and Torres Strait Islander individuals and families.


The research priorities should target areas that will create the most meaningful impact for autistic individuals and their families.

2020 Community Focus Groups

In 2020 the AARC is holding a series of focus groups for 5 of the 10 Research Priority Areas (Communication, Education, Employment, Health & Wellbeing and Justice). The focus groups will bring a range of community members together (including autistic people, family members and relevant professionals) and involve a combination of online discussion groups and short surveys. 

Find out more

2019 Community Consultation

In 2019 the AARC released a draft set of autism research priorities. An online survey and submissions community consultation process took place in June 2019. The outcomes of the consultation process will help guide the future focus of autism research activities and research funding in Australia.

We thank the community for their generous contribution to this process.

You can now view the final Report of the Australian Autism Research Priorities 2019

If you would like to view a copy of the original draft priorities which were the subject of the community consultation:

Contact us

If you have any questions, or would like to be kept informed about future opportunities to be involved in the work of the AARC you can email us:

AARC Secretariat