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

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Haar, T., Brownlow, C., Hall, G., Heyworth, M., Lawson, W., Poulsen, R., Reinisch, T., & Pellicano, E. (2024). ‘We have so much to offer’: Community members’ perspectives on autism research. Autism, 29(9), 2254-2267. https://doi.org/10.1177/13623613241248713

Publication date: 13 May 2024 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
8
Publication authors identified as autistic
5 / 8 (62.5%)
  1. Tori Haar *
  2. Charlotte Brownlow
  3. Gabrielle Hall *
  4. Melanie Heyworth *
  1. Wenn Lawson *
  2. Rebecca Poulsen *
  3. Tamara Reinisch
  4. Elizabeth Pellicano

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.Lay AbstractAutism 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.

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Cited references
95
Total cited references integrated for this publication.
Cited references with an identified autistic author
33 / 95 (34.7%)
Cited author occurrences identified as autistic
85 / 320 (26.6%)
Among occurrences linked to AutiHub author records: 85 / 226 (37.6%). Distinct cited authors identified as autistic: 52 / 245 (21.2%).
Cited author occurrences linked to AutiHub author records
226 / 320 (70.6%)
Distinct linked cited authors: 151 / 245 (61.6%)
Linked cited-author occurrences not identified as autistic
141 / 226 (62.4%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 141 / 320 (44.1%). Distinct linked cited authors not identified as autistic: 99 / 151 (65.6%).
2 cited bibliography entries could not be fully enriched from DOI metadata.
Crossref: not found (1) · DataCite: not found (1)
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