Élaboration d’un cadre d’évaluation pour promouvoir la participation significative des personnes autistes à la recherche : l’outil Evaluating Levels of Participation in Autism Research et la liste de contrôle du groupe de recherche-action participative

Titre original en anglais : Developing an Evaluation Framework to Promote Meaningful Participation of Autistic People in Research: The Evaluating Levels of Participation in Autism Research Tool and Participatory Action Research Group Checklist

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Horton, E. D., Brownhill, L. A., Tones, D., Goldschmied, A. Z., Knops, M. J. J., Gürbüz, E., Dommett, E. J., Wilkinson, L., Taylor, J., Toro, C., & Jutley-Neilson, J. (2026). Developing an Evaluation Framework to Promote Meaningful Participation of Autistic People in Research: The Evaluating Levels of Participation in Autism Research Tool and Participatory Action Research Group Checklist. Autism in Adulthood. https://doi.org/10.1177/25739581261428642

Date de publication: 30/03/2026 Ajout dans AutiHub: 17/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
11
Auteur·ices de la publication identifié·es comme autistes
0 / 11 (0,0 %)
  1. E. Delbert Horton
  2. Laura A. Brownhill
  3. Daniel Tones
  4. Anita Z Goldschmied
  1. Max J J Knops
  2. Emine Gürbüz
  3. Eleanor J. Dommett
  4. Lauren Wilkinson
  1. Jackie Taylor
  2. Carla Toro
  3. Jagjeet Jutley-Neilson

Résumé

Malgré une reconnaissance croissante de la participation des personnes autistes en tant que collaboratrices à la recherche, ce domaine continue de faire face à plusieurs défis importants. Les principaux problèmes comprennent un manque d’orientations pour les chercheurs sur la manière de mettre efficacement en œuvre des méthodes participatives et une pénurie d’outils d’évaluation visant à soutenir les bonnes pratiques. La participation significative peut corriger les déséquilibres de pouvoir, réduire la stigmatisation et garantir que la recherche reflète avec précision les expériences vécues des personnes autistes, conduisant à des services et à un soutien plus pertinents et plus efficaces. Pour relever ces défis, des chercheurs ont codéveloppé et affiné un cadre évaluatif standardisé afin de promouvoir une participation significative des personnes autistes à toutes les étapes de la recherche et d’évaluer les bonnes pratiques dans l’établissement d’un groupe de recherche-action participative (PAR), tout en renforçant la transparence concernant l’ampleur de la participation. Des outils provisoires ont été élaborés par un chercheur principal neurodivergent, le processus de développement et d’affinement étant dirigé par des chercheurs autistes qui ont facilité une consultation avec des chercheurs participatifs, afin de garantir que les outils reflètent des perspectives diverses et des expériences vécues. Le cadre d’évaluation affiné comprend l’outil Evaluating Levels of Participation in Autism Research, qui favorise la participation des personnes autistes en tant que collaboratrices à toutes les étapes de la recherche, ainsi qu’une liste de contrôle du groupe PAR, qui évalue les interactions inclusives et accessibles avec les collaborateurs autistes. Ces deux outils aident les chercheurs à aborder les dynamiques de pouvoir, fournissent des orientations précises sur la manière d’opérationnaliser les approches participatives et servent de cadres pour évaluer et améliorer la participation significative des personnes autistes à la recherche. Ces outils peuvent soutenir des collaborations équitables et ayant un impact entre les chercheurs et la communauté autiste.

Despite growing recognition of the participation of autistic people as collaborators in research, this field continues to face several significant challenges. Key issues include a lack of guidance for researchers on how to implement participatory methods effectively and a shortage of evaluation tools to support best practice. Meaningful participation has the potential to redress power imbalances, reduce stigma, and ensure that research accurately reflects the lived experiences of autistic individuals, leading to more relevant and effective services and support. To address these challenges, researchers codeveloped and refined a standardized evaluative framework to promote meaningful autistic participation across all research stages and evaluate good practice in establishing a Participatory Action Research (PAR) Group while enhancing transparency regarding the extent of involvement. Draft tools were developed by a neurodivergent lead researcher, with the development and refinement process led by autistic researchers who facilitated consultation with participatory researchers, ensuring that the tools reflected diverse perspectives and lived experiences. The refined evaluation framework consists of the Evaluating Levels of Participation in Autism Research Tool which promotes participation of autistic people as collaborators across the stages of research and PAR group checklist which evaluates inclusive and accessible interactions with autistic collaborators. Both tools support researchers in addressing power dynamics, provide specific guidance on how to operationalize participatory approaches, and serve as frameworks for evaluating and enhancing the meaningful participation of autistic individuals in research. These tools can support equitable and impactful collaborations between researchers and the autistic community.

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