Les lignes directrices fondées sur la pratique d'AASPIRE pour l'inclusion d'adultes autistes dans la recherche en tant que co-chercheurs et participants aux études

Titre original en anglais : The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants

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Nicolaidis, C., Raymaker, D. M., Kapp, S. K., Baggs, A. E., Ashkenazy, E., McDonald, K., Weiner, M., Maslak, J., Hunter, M., & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007-2019. https://doi.org/10.1177/1362361319830523

Date de publication: 03/04/2019 Ajout dans AutiHub: 04/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
10
Auteur·ices de la publication identifié·es comme autistes
5 / 10 (50,0 %)
  1. Christina Nicolaidis
  2. Dora M Raymaker *
  3. Steven K. Kapp *
  4. Amelia E.V. Baggs
  5. Elesia Ashkenazy *
  1. Katherine McDonald
  2. Michael Weiner
  3. Joelle Maslak *
  4. Morrigan Hunter *
  5. Andrea Joyce

Résumé

À mesure que l'intérêt pour l'autisme à l'âge adulte augmente, le besoin de méthodes visant à promouvoir l'inclusion d'adultes autistes dans la recherche augmente également. Notre objectif était de créer des lignes directrices fondées sur la pratique pour l'inclusion d'adultes autistes, à la fois en tant que membres de l'équipe de recherche et en tant que participants aux études. Nous avons mené une ethnographie institutionnelle de trois partenariats de recherche étroitement liés qui ont utilisé des méthodes participatives avec des adultes autistes au cours des années 2006-2018. Nous avons utilisé une approche itérative combinant des discussions avec des partenaires communautaires et universitaires et l'examen d'artefacts. Les lignes directrices visant à promouvoir l'inclusion d'adultes autistes en tant que co-chercheurs mettent l'accent sur la transparence concernant les objectifs du partenariat, la définition claire des rôles et le choix des partenaires, la création de processus de communication efficace et de partage du pouvoir, l'établissement et le maintien de la confiance, la diffusion des résultats, l'encouragement au renforcement des capacités de la communauté et la rémunération équitable des partenaires. Les lignes directrices visant à promouvoir l'inclusion d'adultes autistes en tant que participants aux études mettent l'accent sur la maximisation de l'autonomie et de l'inclusion, la création d'un processus de consentement accessible, l'offre de multiples modalités de participation, l'adaptation des instruments d'enquête pour une utilisation avec des adultes autistes, la création de guides d'entretien qualitatif accessibles et la gestion des données provenant de répondants substituts. Bien que ces lignes directrices fondées sur la pratique puissent ne pas s'appliquer à toutes les équipes de recherche, nous espérons que d'autres chercheurs pourront tirer parti de ces enseignements pratiques lorsqu'ils incluent des adultes autistes dans la recherche.

As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006-2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.

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
47
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
19 / 47 (40,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
43 / 269 (16,0 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 43 / 178 (24,2 %). Auteurices cité·es distinct·es identifié·es comme autistes : 10 / 136 (7,4 %).
Occurrences citées rattachées à la base AutiHub
178 / 269 (66,2 %)
Auteurices cité·es distinct·es rattaché·es : 60 / 136 (44,1 %)
Occurrences rattachées, non identifiées comme autistes
135 / 178 (75,8 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 135 / 269 (50,2 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 50 / 60 (83,3 %).
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