Vers une recherche sur l’autisme reproductible et respectueuse : combiner des pratiques de recherche ouverte et participative sur l’autisme

Titre original en anglais : Towards reproducible and respectful autism research: Combining open and participatory autism research practices

Hobson, H., Linden, A., Crane, L., & Kalandadze, T. (2023). Towards reproducible and respectful autism research: Combining open and participatory autism research practices. Research in Autism Spectrum Disorders, 106, 102196. https://doi.org/10.1016/j.rasd.2023.102196

Date de publication: 24/06/2023 Ajout dans AutiHub: 17/07/2026 Type: Article Langue de l’article: Anglais

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Résumé

La recherche ouverte désigne généralement un ensemble de pratiques visant à accroître la transparence, la rigueur, la reproductibilité et l’inclusivité de la recherche. La recherche participative consiste à intégrer les points de vue de la communauté de l’autisme et à partager le pouvoir avec elle afin de décider quelles recherches sont menées, comment elles le sont et comment elles sont mises en œuvre. L’intérêt pour les pratiques ouvertes et participatives dans la recherche sur l’autisme est croissant. À ce jour, toutefois, ces pratiques ont eu tendance à être envisagées séparément. Dans cet article, nous exposons la valeur des approches ouvertes et participatives pour le domaine de la recherche sur l’autisme, en soulignant les principaux points de recoupement. Nous proposons trois principes fondamentaux qui sous-tendent la recherche ouverte et participative sur l’autisme : (1) la nécessité de disposer d’une expertise et d’infrastructures adéquates pour faciliter une recherche de haute qualité, (2) la nécessité d’un plus grand degré d’accessibilité à toutes les étapes du processus de recherche, et (3) la nécessité de favoriser des relations de confiance entre les communautés autiste et de la recherche. L’adoption de principes ouverts et participatifs dans la recherche sur l’autisme présente divers défis et opportunités. Nous espérons que nos principes aideront les chercheurs à intégrer plus pleinement ces approches dans leurs travaux.

Open research broadly refers to a set of practices that aim to increase transparency, rigor, reproducibility and inclusivity of research. Participatory research refers to incorporating the views and sharing power with the autism community to decide what research gets done, how it is done and how it is implemented. There is growing interest in both open and participatory practices in autism research. To date, however, these practices have tended to be considered separately. In this paper, we outline the value of both open and participatory approaches to the autism research field, highlighting key points of overlap. We propose three core principles underpinning open and participatory autism research: (1) the need for adequate expertise and infrastructure to facilitate high quality research, (2) the need for a greater degree of accessibility at all stages of the research process, and (3) the need to foster trusting relationships between the autistic and research communities. There are various challenges and opportunities of adopting open and participatory principles in autism research. We hope our principles support researchers to embed these approaches more fully within their work.

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