‘We have so much to offer’: Community members’ perspectives on autism research
Article
Haar, Tori, Brownlow, Charlotte, Hall, Gabrielle, Heyworth, Melanie, Lawson, Wenn, Poulsen, Rebecca, Reinisch, Tamara and Pellicano, Elizabeth. 2024. "‘We have so much to offer’: Community members’ perspectives on autism research." Autism: the international journal of research and practice. https://doi.org/10.1177/13623613241248713
| Article Title | ‘We have so much to offer’: Community members’ perspectives on autism research |
|---|---|
| ERA Journal ID | 6119 |
| Article Category | Article |
| Authors | Haar, Tori, Brownlow, Charlotte, Hall, Gabrielle, Heyworth, Melanie, Lawson, Wenn, Poulsen, Rebecca, Reinisch, Tamara and Pellicano, Elizabeth |
| Journal Title | Autism: the international journal of research and practice |
| Number of Pages | 14 |
| Year | 2024 |
| Publisher | SAGE Publications Ltd |
| Place of Publication | United Kingdom |
| ISSN | 1362-3613 |
| 1461-7005 | |
| Digital Object Identifier (DOI) | https://doi.org/10.1177/13623613241248713 |
| Web Address (URL) | https://journals.sagepub.com/doi/10.1177/13623613241248713 |
| 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. |
| Keywords | engagement; neurodiversity; participatory research; translational research |
| Contains Sensitive Content | Does not contain sensitive content |
| ANZSRC Field of Research 2020 | 420699. Public health not elsewhere classified |
| Byline Affiliations | Macquarie University |
| Cooperative Research Centre for Living with Autism (Autism CRC), Australia | |
| Reframing Autism, Australia | |
| University of Southern Queensland | |
| ORIMA Research, Australia | |
| University College London, United Kingdom |
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| haar-et-al-2024-we-have-so-much-to-offer-community-members-perspectives-on-autism-research.pdf | ||
| License: CC BY 4.0 | ||
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