'I'm not just a guinea pig': Academic and community perceptions of participatory autism research.
Both researchers and the autism community want more shared control of studies, but the field still lacks money, skills, and university support to make it last.
01Research in Context
What this study did
den Houting et al. (2021) asked autism researchers and community members how they feel about participatory research. They sent a survey to university staff, autistic adults, parents, and service providers across Australia.
People rated how much the community should help plan, run, and share research. They also listed what stops them from doing it.
What they found
Eight out of ten wanted moderate or heavy community say in every research step. Seven out of ten said, 'We need more of this.'
But they also named clear blocks: teams do not know how to share power, money is tight, and universities reward fast papers over slow partnership work.
How this fits with other research
Adams et al. (2024) later checked eleven autism studies that already tried community team-ups. They found most papers boast about trust, yet almost none report how the team kept the work going after the grant ended. The 2021 survey flags the same gap: people want partnership, but the field has no playbook for long-term shared power.
Elsabbagh et al. (2014) had earlier pushed 'priority-setting workshops' as a fix. The new numbers back the idea—respondents asked for exactly those structured tools.
Fletcher-Watson et al. (2017) ran a similar big survey in Europe. Both studies show strong support for inclusive research, giving confidence that the wish is wide, not just an Aussie quirk.
Why it matters
If you run autism research or sit on a grant panel, treat this as a green light from the community. Build in paid autistic advisor roles, budget for partnership training, and write sustainability plans that outlive the grant. Start small: add one community co-lead on your next proposal and lock in monthly check-ins where they hold veto power. Those steps turn the 82% approval into real shared science.
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02At a glance
03Original abstract
Participatory research means working together (engaging) with the community that is affected by research to make decisions about that research. Participatory research is common in some fields, but it is still rare in autism research. In this study, we wanted to find out how Australian autism researchers and community members feel about participatory research. We worked with an Autistic Advisory Group to design this study, understand the results and write this article. We asked 127 people, all working on research from the Cooperative Research Centre for Living with Autism, to complete an online survey about participatory research. The survey included some questions that were answered on rating scales, and some where participants wrote their own answers. Seventy-nine people (64 researchers and 15 community members) completed most or all of the survey. The rating scales showed that most participants (82%) supported moderate or extensive community engagement in research, and most participants (72%) thought there should be more community engagement in autism research. In general, the participants rated their experiences of participatory research positively. Using the participants' own written answers, we found four main ideas: (1) participatory research is important, but difficult; (2) many people do not fully understand what participatory research is; (3) academics and community members do not work together as = and (4) research systems are not designed for participatory research. Our results suggest that autism researchers and community members want to do more participatory research, but they might need training, support and funding to do participatory research well.
Autism : the international journal of research and practice, 2021 · doi:10.1177/1362361320951696