'We have so much to offer': Community members' perspectives on autism research

Added on 19/06/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

Tori Haar * , Charlotte Brownlow , Gabrielle Hall * , Melanie Heyworth * , Wenn Lawson * , Bec Poulsen * , Tamara Reinisch , Elizabeth Pellicano
'We have so much to offer': Community members' perspectives on autism research published in the journal "Autism" Preprint, 14 pages , doi: 10.1177/13623613241248713

*Five co-authors had publicly identified as autistic. [Learn more about this mention]

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Summary/Presentation

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.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

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