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.

From January 2022, the AARC will be changing its name to the Australasian Autism Research Council as it expands to include members from both Australia and New Zealand. 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.

Community consultation is an important part of what the AARC does. In 2019, the AARC conducted an online survey and submission process which received more than 1,000 responses. This culminated in the release of the 2019 Australian Autism Research Priorities. A series of focus groups in 2020 further explored five of the 2019 Research Priority areas.

2020-21 Research Priority Update Launch

In 2020 the AARC held a series of focus groups for 5 Research Priority Areas (Communication, Education, Employment, Health & Wellbeing and Justice). The focus groups brought together a range of community members (including autistic people, family members and relevant professionals) and involved a combination of online discussion groups and short surveys. The output of this process is a series of fifty research topics, ten for each of the five areas explored.

We thank focus group members for their time and expertise during the community consultation.

You can now read the final Research report on focus groups to identify research questions for community informed priority areas and its supporting documents. This report has been written by the team from ORIMA Research who were engaged to deliver this project on behalf of the AARC.

Download Final Report Download Executive Summary Download Appendices

The AARC also released an additional report, the 2020-21 AARC Research Priority Update, which is intended to be read alongside the ORIMA report which includes the fifty research topics and describes the process in greater detail. This additional report describes the process and summarises the findings (including their limitations and the opportunities they offer). The reports were released on 19th April 2021 in conjunction with a webinar presented by AARC members Prof Liz Pellicano and Dr Wenn Lawson, and Autism CRC Project Coordinator Tori Haar.

Download 2020-21 Research Priority Update Download Research Report of Focus Groups Download community summary Watch webinar 

AARC Membership

The AARC is currently comprised of the following members:

  • Charlotte Brownlow
  • Shelly Dival
  • Emma Goodall
  • Melanie Heyworth
  • Katie Koullas
  • Wenn Lawson (co-chair)
  • Pam Macrossan
  • Malcolm Mayfield
  • Liz Pellicano (co-chair)
  • Rebecca Poulsen
  • Geraldine Roberston
  • Travis Saunders
  • Lizzie Smith
  • Mikala Sedgwick

In 2020 the AARC experienced a number of delays which meant that it was not possible for their report to be completed by November, in line with the AARC Terms of Reference. To allow the current membership of the AARC to see this report through to finalisation, the 2020 call for nominations was also delayed.

Selection for AARC membership in 2022 is underway

Expressions of Interest (EOIs) for the AARC in 2022 are now closed.

The AARC members are now reviewing the EOIs to make selections for next year’s membership. If you submitted an EOI we will let you know if you can be part of the AARC via email by 5pm on November 12th 2021. 

  • We are working hard to ensure that we both meet our Terms of Reference requirements and continue to have an insightful, passionate and diverse group of people as part of the AARC. 
  • We received more than 50 EOIs for the AARC, including more than 30 from autistic people. 
  • All of the AARC members are volunteers, with lots of commitments outside of the AARC, and once the EOIs have all been considered and agreement is reached their selections are submitted to the Autism CRC Board for approval. 

The combination of the factors listed above means that selection takes us some time. 

We called for up to 13 positions, which will be filled by a mixture of renominating and new members (renominating members can be appointed to up to half the positions called for). Because the AARC doesn’t have a fixed number of members (there can be anywhere from 8 to 15) we cannot say for sure how many new members will be selected. What we can say is that there will be at least two (2) members from New Zealand selected. Outside of the EOI process there are also two (2) current members who still have another year on their terms. During the last EOI process there were five (5) new members and three (3) renominating members selected.

If you missed this year’s Expression of Interest process, unfortunately we are unable to accept late applications. You can find out more about the EOI process on the 2021 Expressions of Interest page, noting that it is provided for general information purposes only – and is subject to change for the next EOI round which will take place in late 2022.

Upcoming Changes for 2022

From January 2022, the AARC will be changing its name to the Australasian Autism Research Council as it expands to include members from both Australia and New Zealand.

A number of changes will be made to the Terms of Reference to reflect this expansion. These changes will not apply until January 2022 (the current Terms of Reference, as they apply to the 2021 AARC membership, can be found in the next section).

In addition to updating several references to encompass both Australia and New Zealand, the key changes will be as follows:

  • The maximum membership of the AARC will be increased from 14 to 15 members.
  • A requirement will be added that council membership will include at least 2 representatives from Australia and New Zealand respectively and that representatives from each country should include at least 1 individual who is either an autistic person or the parent or carer of a person on the autism spectrum.

Terms of Reference

The following updated Terms of Reference will come into effect from 1 January 2022. The changes allow for the inclusion of New Zealand members. The previous version, which is still in effect until 31 December 2021, can be provided on request.

Objectives

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.

Membership

The AARC will be composed of no less than 8 and no more than 14 members. Members must be aged 18 or over and reside in Australia.

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

  • At least 3 autistic individuals
  • At least 1 parent or carer of a person on the autism spectrum
  • 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.

Co-chairs

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

The first iteration of the AARC was via invitation by an AARC Executive Committee established by the Autism CRC Board. Membership of subsequent Councils is appointed following an open nominations process.

An AARC Nominations Sub-Committee comprised of 4 members of the AARC, including the co-chairs, will be appointed by the AARC members and responsible for shortlisting candidates and making recommendations for discussion by the AARC. Ordinary members appointed to the Nominations Sub-Committee must have been members of the AARC for at least 9 months and not be intending to renominate as part of the current process.

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, including the positions of all members whose current terms are due to expire. Members from those positions can renominate, however at least half of the positions called for nomination should be filled by new candidates.

An invitation to membership of the AARC is made to persons on an individual basis. While an individual might be nominated by an organisation, membership is granted to the individual not to the organisation that nominated them. If that individual ceases to be a member, then the membership position will be dealt with as a casual vacancy (as described below).

Members of the AARC are unable to nominate a proxy to attend meetings on their behalf.

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

A member may:

  1. resign from the AARC by notifying the Co-Chairs of the AARC in writing; or
  2. 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, which may include their not participating in AARC activities for an extended period, creating a casual vacancy.

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

Voting

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.

Full meetings of the AARC will take place at least 3 times each year, up to a maximum of 5 times. In addition to full meetings of the AARC, members may also be invited to additional optional meetings relevant to any project work being undertaken on behalf of the Council. Matters may also be considered out of session via electronic means (e.g., email or online polls).

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

Reporting

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.

Review

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.

Impact

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

2019 Community Consultation

In 2018-19 the first iteration of the AARC considered domestic and international commitments, and existing global and Australian surveys on autism research priorities from which they identified seven broad research priority areas which were presented to the broader community in a draft report. The community was asked what was important to them through an online survey and submission process which received more than 1,000 responses. The 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.

You can now read the final Report of the Australian Autism Research Priorities 2019 and its supporting documents.

Download Final Report Download Appendices Download Snapshot

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
aarc@autismcrc.com.au