Construire l'avenir ensemble : façonner la recherche sur l'autisme par une participation significative

Titre original en anglais : Making the future together: Shaping autism research through meaningful participation

Fletcher‐Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., Leekam, S., Milton, D., Parr, J. R., & Pellicano, E. (2018). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943-953. https://doi.org/10.1177/1362361318786721

Date de publication: 10/08/2018 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
10
Auteur·ices de la publication identifié·es comme autistes
4 / 10 (40,0 %)

Résumé

Les méthodes de recherche participative mettent en relation les chercheurs et les communautés concernées afin d'atteindre des objectifs communs. Ces méthodes peuvent produire des résultats pertinents pour la vie des personnes et donc susceptibles d'avoir un impact positif. Dans le contexte d'un corpus vaste et croissant de recherches sur l'autisme, d'une mise en œuvre qui demeure insuffisante et de certains éléments indiquant l'insatisfaction de la communauté, les arguments en faveur d'une recherche participative sur l'autisme sont convaincants. Afin d'élaborer un cadre pour ce travail collaboratif, une série de séminaires au Royaume-Uni a été organisée et coproduite par des personnes autistes et non autistes disposant d'une expertise universitaire, professionnelle et issue de l'expérience vécue. Cet article rend compte des résultats de cette série, en identifiant cinq thèmes pertinents pour la construction d'une communauté de pratique en recherche participative : Respect, Authenticité, Hypothèses, Infrastructure et Empathie. Chaque thème est associé à un exemple précis provenant de la recherche et d'au-delà, afin d'inspirer de nouvelles pratiques dans ce domaine. Nous appelons au développement de compétences en recherche participative au sein de la communauté de recherche sur l'autisme ainsi qu'à la facilitation d'un plus grand leadership autiste et de partenariats accrus dans la recherche. Un tel travail, s'il est réalisé selon des normes élevées, est susceptible de conduire à une meilleure transposition dans la pratique et à de meilleurs résultats pour les personnes autistes et celles qui les soutiennent.

Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people's lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

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
72
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
13 / 72 (18,1 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
18 / 243 (7,4 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 18 / 105 (17,1 %). Auteurices cité·es distinct·es identifié·es comme autistes : 10 / 202 (5,0 %).
Occurrences citées rattachées à la base AutiHub
105 / 243 (43,2 %)
Auteurices cité·es distinct·es rattaché·es : 68 / 202 (33,7 %)
Occurrences rattachées, non identifiées comme autistes
87 / 105 (82,9 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 87 / 243 (35,8 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 58 / 68 (85,3 %).
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