Australasian Autism Research Council - Defining National Autism Research Priorities

How big of a role do autistic people play in the AARC?

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Autistic people play a significant role in the Australian Autism Research Council (AARC) both as members of the Council and as community members who choose to engage with our consultations.  

The AARC is focused on consulting the broader community of people who are interested in research that can help autistic people in their everyday lives in order to define and then promote community informed priorities for autism research in Australia. Within that purpose, our definition of community is not solely focused on any one group, even one as important as autistic people themselves. Not everyone agrees on what the top research priorities should be and that’s one of the reasons the AARC tries to bring together a diverse range of perspectives and experiences, both from within a particular group and across different stakeholders.  

The AARC's Terms of Reference ensure that a range of key communities are represented on the Council. There is a requirement for at least three (3) autistic members out of a maximum membership of 14 but only one from each of the other five (5) stakeholder groups that are specified (parent/carer, service provider, advocacy organisation, autism researcher and Federal government). We also have a requirement that one of the two chairs of the AARC must be autistic. Currently (June 2021), half of the members of the AARC identify as autistic and these members also bring a range of other valuable perspectives to the AARC’s work. Our community consultations have sought input from many different stakeholders, including but not limited to the ones mentioned in our Terms of Reference.  

For our 2019 community consultation survey 247 (22%) of the respondents identified themselves as being autistic as did 33 (61%) of community experts who took part in our 2020 focus groups discussion boards. The focus group members were recruited through an expression of interest process which was promoted on social media and both autistic and non-autistic AARC members were involved in the selection of group members.