‘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. E., 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

Journal or book title
Autism
Publisher
SAGE Publications
Volume
29
Issue
9
Pages
2254-2267
Publication date: 13 May 2024 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

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 E. 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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 17:07.

Cited references
95
With a DOI
79
Without a DOI, from raw bibliography text
15
36 / 95 (37.9%) cited references include at least one author identified as autistic.
References with data to complete
7 / 95 (7.4%)
References with detected author names
88 / 95 (92.6%)
Without detected author names
7
Without a structured title
6
Without a stable identifier
13
References with raw author names still to review
6
References with external metadata lookup issues
1
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
320
From DOI or external metadata
320
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
6
243 / 320 (75.9%) names are linked to an author already present in AutiHub. 77 / 320 (24.1%) names are not yet linked.
Names linked to a person identified as autistic
101 / 320 (31.6%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 101 / 243 (41.6%). Distinct people identified as autistic: 65 / 244 (26.6%).
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