'We Have So Much to Offer': Community Members' Perspectives on Autism Research
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| Title: | 'We Have So Much to Offer': Community Members' Perspectives on Autism Research |
|---|---|
| Language: | English |
| Authors: | Tori Haar, Charlotte Brownlow, Gabrielle Hall, Melanie Heyworth, Wenn Lawson, Rebecca Poulsen, Tamara Reinisch, Elizabeth Pellicano (ORCID |
| Source: | Autism: The International Journal of Research and Practice. 2025 29(9):2254-2267. |
| Availability: | SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com |
| Peer Reviewed: | Y |
| Page Count: | 14 |
| Publication Date: | 2025 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Autism Spectrum Disorders, Community Attitudes, Community Involvement, Experience, Attitudes toward Disabilities, Participatory Research, Foreign Countries, Adults |
| Geographic Terms: | Australia |
| DOI: | 10.1177/13623613241248713 |
| ISSN: | 1362-3613 1461-7005 |
| 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. |
| Abstractor: | As Provided |
| Entry Date: | 2025 |
| Accession Number: | EJ1479942 |
| Database: | ERIC |
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| 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. |
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| ISSN: | 1362-3613 1461-7005 |
| DOI: | 10.1177/13623613241248713 |
