« Nous avons tant à offrir » : perspectives de membres de la communauté sur la recherche sur l’autisme

Titre original en anglais : ‘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

Date de publication: 13/05/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
8
Auteur·ices de la publication identifié·es comme autistes
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

Résumé

La recherche sur l’autisme est à l’aube d’un changement important. Les appels se multiplient, de la part d’autoreprésentants autistes, de chercheurs et d’autres scientifiques, en faveur d’un changement de paradigme dans la recherche sur l’autisme. Pourtant, on sait peu de choses sur ce que les membres non universitaires des communautés autistes et de l’autisme pensent de la recherche sur l’autisme. Nous, une équipe de chercheurs autistes et non autistes, avons comblé cette lacune en réalisant une analyse secondaire de données recueillies dans le cadre d’un exercice approfondi de définition des priorités de recherche en Australie. Plus précisément, nous avons demandé : quels sont les points de vue et les expériences des membres de la communauté concernant la recherche sur l’autisme ? Lors de discussions immersives de groupes de discussion en ligne fondées sur le texte, organisées sur 10 jours, 55 membres de la communauté, y compris des personnes autistes, des membres de leur famille et des professionnels, ont partagé leurs perspectives et leurs expériences de la recherche sur l’autisme. Nous avons analysé les données au moyen d’une analyse thématique réflexive, en adoptant une approche inductive. Les répondants ont largement convenu que la recherche sur l’autisme pouvait jouer un rôle puissant pour aider à façonner de bonnes vies pour les personnes autistes, mais ils estimaient que, pour y parvenir efficacement, des changements majeurs étaient nécessaires. Ceux-ci comprenaient un abandon des visions trop étroites des personnes autistes fondées sur les déficits, au profit d’une plus grande attention portée aux facteurs contextuels, ainsi que davantage de décisions dirigées par la communauté concernant ce qui est étudié et la manière dont cela l’est. Ces résultats mettent en évidence de nouvelles possibilités concernant les processus de recherche, les résultats et leur transposition. Résumé grand public La recherche sur l’autisme évolue. Des militants et des chercheurs autistes souhaitent que les personnes autistes de la communauté aient davantage leur mot à dire sur ce qui est étudié et sur la manière dont cela est étudié. Mais nous n’avons pas demandé aux personnes de la communauté ce qu’elles en pensent. Cette étude a utilisé les informations obtenues auprès de 55 membres de la communauté, y compris des personnes autistes, leurs familles et des professionnels travaillant avec des personnes autistes, dans le cadre d’une étude existante sur leurs priorités en matière de recherche sur l’autisme. Nous avons réexaminé ce qui avait été dit afin de voir si nous pouvions comprendre les points de vue et les expériences des membres de la communauté concernant la recherche sur l’autisme. Les personnes ont fortement convenu que la recherche peut jouer un rôle puissant dans l’élaboration de bonnes vies pour les personnes autistes. Elles estimaient également que d’importants changements étaient nécessaires pour que la recherche puisse y parvenir. Certains de ces changements consistaient en ce que les chercheurs devraient cesser de considérer l’autisme de manière étroite et négative, où les personnes autistes sont considérées comme le problème. Les chercheurs doivent davantage réfléchir à la manière d’améliorer les systèmes, les expériences et la façon dont les autres personnes réagissent aux personnes autistes. Ils souhaitent également que la communauté de l’autisme soit davantage impliquée dans ce qui est étudié et dans la manière dont cela est étudié. Les résultats de notre étude mettent ici en évidence le potentiel de la recherche à être positive lorsque les personnes autistes et leurs familles sont écoutées, abordées avec compréhension, et respectées et valorisées en tant qu’individus dans le processus de recherche.

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.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
95
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
33 / 95 (34,7 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
85 / 320 (26,6 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 85 / 226 (37,6 %). Auteurices cité·es distinct·es identifié·es comme autistes : 52 / 245 (21,2 %).
Occurrences citées rattachées à la base AutiHub
226 / 320 (70,6 %)
Auteurices cité·es distinct·es rattaché·es : 151 / 245 (61,6 %)
Occurrences rattachées, non identifiées comme autistes
141 / 226 (62,4 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 141 / 320 (44,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 99 / 151 (65,6 %).
2 entrées de bibliographie citée n’ont pas pu être entièrement enrichies à partir des métadonnées DOI.
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