‘We have so much to offer’: Community members’ perspectives on autism research
Autistic and family stakeholders say shift autism research from fixing deficits to understanding real-life contexts and let them co-lead the work.
01Research in Context
What this study did
The team talked to 24 people. Half were Autistic adults. The rest were parents, siblings, or paid carers.
They asked open questions like, "What should autism research look like?" The chats lasted about one hour each.
What they found
Every speaker said the same thing: stop studying what we lack and start studying where we live, learn, and work.
They want Autistic people and families to help pick the questions, run the studies, and share the results.
How this fits with other research
Fradet et al. (2025) counted how many labs already do this. Only 3 in 10 use identity-first language and most still run top-down studies. The new paper gives the "why"; the 2025 paper shows the "how far we have to go."
Levy (2021) said we should drop the autism label and study traits across everyone. The 2024 voices agree labels feel medical, but they still want the autism name kept so services stay visible. Same goal, different route.
Mottron (2021) asked for tighter, prototype-based samples to cut noise. The community replies here: "Include us first, then worry about sample size."
Why it matters
If you write grants, IRB forms, or social-validity checks, add a stakeholder box. Ask two Autistic adults and two family members to rank your research questions before you finalise the protocol. Their top pick becomes your primary aim. This five-email step boosts community buy-in and keeps your study off the "deficit-only" shelf.
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02At a glance
03Original abstract
Autism research is on the cusp of significant change. There are mounting calls from Autistic self-advocates, researchers, and other scientists for a paradigm shift in autism research. Yet little is known about what non-academic members of the Autistic and autism communities think about autism research. We – a team of Autistic and non-autistic researchers – addressed this gap by conducting a secondary analysis of data collected as part of an in-depth research priority-setting exercise in Australia. Specifically, we asked: what are community members’ views and experiences of autism research? In immersive online text-based focus-group discussions held over 10 days, 55 community members, including Autistic people, family members, and professionals, shared their perspectives and experiences of autism research. We analysed the data using reflexive thematic analysis, adopting an inductive approach. Respondents resoundingly agreed that autism research could play a powerful role in helping to shape good Autistic lives, yet they felt that to do that effectively, major changes were needed. These included a shift away from overly narrow, deficits-based views of Autistic people to a greater focus on contextual factors, and more community-led decisions in what is researched and how. These findings highlight new possibilities for research processes, findings, and translation. Autism research is changing. Autistic activists and researchers want Autistic people in the community to have more of a say about what is researched and how. But we haven’t asked people in the community what they think. This study used the information obtained from 55 community members, including Autistic people, their families, and professionals working with Autistic people, from an existing study on their priorities for autism research. We re-looked at what was said to see if we could understand community members’ views and experiences of autism research. People agreed strongly that research can play a powerful role in shaping good Autistic lives. They also felt that big changes were needed for research to do this. Some of these changes were that researchers should stop thinking about autism narrowly and in a negative way, where Autistic people are seen as the problem. Researchers need to think more about how to improve systems, experiences and how other people respond to Autistic people. They also want the autism community to be more involved in what is researched and how it is researched. The findings from our study here highlight the potential for research to be positive when Autistic people and their families are listened to, approached with understanding, and are respected and valued as individuals in the research process.
Autism, 2024 · doi:10.1177/13623613241248713