Voix non écoutées: Une revue systématique de la littérature sur les études utilisant des méthodes d'auto-évaluation pour recueillir les perspectives des adultes autistes avec déficience intellectuelle

Ajouté le 13/12/2024

Type de contenu

Article de revue du type Revue de la littérature ( ; anglais)

Unheard voices: A systematic literature review of studies using self-report methods to gather the perspectives of autistic adults with intellectual disability publié dans la revue "Autism in adulthood" Preprint, 17 pages , doi: 10.1089/aut.2024.0272

*Un.e co-auteur·rice s'est publiquement identifié·e comme autiste. [En savoir plus sur cette mention]

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Résumé/Présentation

Contexte : Les personnes autistes ayant une déficience intellectuelle restent significativement sous-représentées dans la recherche, en particulier dans les études qui capturent leurs expériences vécues par le biais de méthodes d'auto-évaluation. Cette revue systématique examine de manière critique les recherches existantes utilisant des méthodes d'auto-évaluation dans des études centrées sur les adultes autistes ayant une déficience intellectuelle, en évaluant l'étendue de ces recherches, les outils d'auto-évaluation utilisés et le degré d'implication de la communauté.
Méthodes : Nous avons réalisé une revue systématique de la littérature conformément aux lignes directrices PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses). Nous avons effectué des recherches dans PsycINFO, Scopus, MEDLINE, ERIC, CINAHL et Web of Science pour des études publiées entre janvier 2013 et juillet 2023. Nous avons procédé à une synthèse narrative pour évaluer les caractéristiques des études, l'utilisation des outils d'auto-évaluation et l'implication des personnes autistes et de leurs communautés dans le processus de recherche.
Résultats : Seules 14 études répondaient aux critères d'inclusion. La majorité se concentrait uniquement sur l'évaluation d'interventions, en accordant peu d'attention à l'exploration des expériences vécues plus larges des adultes autistes avec déficience intellectuelle. Nous avons identifié 24 outils d'auto-évaluation, mais seulement deux avaient été validés spécifiquement pour les personnes ayant une déficience intellectuelle. De plus, moins de la moitié des autres outils rapportaient l'utilisation d'adaptations ou d'accommodements, tels que des aides visuelles ou un langage simplifié. De manière préoccupante, l'implication de la communauté était presque totalement absente, aucune étude n'intégrant de co-production avec des personnes autistes.
Conclusions : Cette revue révèle un besoin critique et urgent de recherches sur l'autisme qui incluent et représentent réellement les adultes autistes avec déficience intellectuelle. Il est impératif que les recherches futures accordent la priorité au développement et à la validation rigoureuse d'outils d'auto-évaluation accessibles, élargissent leur focus au-delà des résultats d'intervention et s'engagent dans une implication significative des personnes autistes tout au long du processus de recherche. Combler ces lacunes profondes est essentiel pour construire un corpus de connaissances équitable et inclusif qui reconnaisse et réponde pleinement à la diversité des expériences au sein de la communauté autiste.

Pour information:

(1) Les références en bleu sont des ressources référencées sur notre site.

(2) Les auteur·rices repris dans cette bibliographie dont le nom est en couleur ont publié d'autres ressources référencées sur le site. Cliquer sur le nom permet de voir la liste des ressources publiées et partagées sur le site.

(3) Les auteur·rices dont le nom est suivi d'une astérisque ont publiquement divulgué être autistes.


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