Voix non entendues : une revue systématique de la littérature des études utilisant des méthodes d’auto-évaluation pour recueillir les perspectives d’adultes autistes présentant une déficience intellectuelle

Titre original en anglais : Unheard Voices: A Systematic Literature Review of Studies Using Self-Report Methods to Gather the Perspectives of Autistic Adults with Intellectual Disability

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Gibbs, V., Cai, R. Y., Love, A. M., Edwards, C., & Ansari, M. A. (2024). Unheard Voices: A Systematic Literature Review of Studies Using Self-Report Methods to Gather the Perspectives of Autistic Adults with Intellectual Disability. Autism in Adulthood, 8(4), 606-622. https://doi.org/10.1089/aut.2024.0272

Date de publication: 10/12/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
5
Auteur·ices de la publication identifié·es comme autistes
1 / 5 (20,0 %)
  1. Vicki Gibbs
  2. Ru Ying Cai
  3. Abigail M.A. Love
  4. Chris Edwards *
  5. Mustafa Al Ansari

Résumé

Contexte : Les personnes autistes présentant une déficience intellectuelle restent considérablement sous-représentées dans la recherche, en particulier dans les études qui recueillent leurs expériences vécues au moyen de méthodes d’auto-évaluation. Cette revue systématique examine de manière critique les recherches existantes employant des méthodes d’auto-évaluation dans des études centrées sur des adultes autistes présentant une déficience intellectuelle, en évaluant l’étendue de ces recherches, les mesures d’auto-évaluation utilisées et le degré d’implication de la communauté. Méthodes : Nous avons mené une revue systématique de la littérature conformément aux recommandations Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Nous avons recherché dans PsycINFO, Scopus, MEDLINE, ERIC, CINAHL et Web of Science des études publiées entre janvier 2013 et juillet 2023. Nous avons réalisé une synthèse narrative afin d’évaluer les caractéristiques des études, l’utilisation des mesures 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 était étroitement axée sur l’évaluation d’interventions, avec peu d’attention accordée à l’exploration des expériences vécues plus larges des adultes autistes présentant une déficience intellectuelle. Nous avons identifié 24 mesures d’auto-évaluation, mais seules deux avaient été validées spécifiquement pour les personnes présentant une déficience intellectuelle. En outre, moins de la moitié des mesures restantes faisaient état de l’utilisation d’adaptations ou d’aménagements quelconques, tels que des aides visuelles ou un langage simplifié. De manière alarmante, l’implication de la communauté était presque entièrement absente, aucune étude n’intégrant la coproduction avec des personnes autistes. Conclusions : Cette revue révèle un besoin critique et urgent de recherches sur l’autisme qui incluent et représentent véritablement les adultes autistes présentant une 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 champ au-delà des résultats des interventions et s’engagent à une implication significative des personnes autistes tout au long du processus de recherche. Combler ces profondes lacunes est essentiel pour constituer un corpus de connaissances équitable et inclusif qui reconnaisse pleinement les diverses expériences au sein de la communauté autiste et y réponde. Résumé communautaire : Les recherches futures devraient inclure les propres perspectives de ces adultes afin de mieux comprendre leurs besoins et leurs priorités. Cela signifie utiliser des méthodes qui leur permettent de partager directement leurs expériences au lieu de s’appuyer principalement sur des aidants ou d’autres personnes pour parler en leur nom. Les chercheurs doivent également utiliser plus souvent des mesures d’auto-évaluation, en particulier pour des sujets tels que la qualité de vie et le bien-être, pour lesquels il est essentiel de recueillir le propre point de vue de la personne.

Background: Autistic individuals with intellectual disability remain significantly underrepresented in research, particularly in studies that capture their lived experiences through self-report methods. This systematic review critically examines existing research employing self-report methods in studies where the focus is on autistic adults who have intellectual disability, evaluating the scope of this research, the self-report measures used, and the extent of community involvement. Methods: We conducted a systematic literature review in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched PsycINFO, Scopus, MEDLINE, ERIC, CINAHL, and Web of Science for studies published between January 2013 and July 2023. We conducted a narrative synthesis to evaluate study characteristics, the use of self-report measures, and the involvement of autistic individuals and their communities in the research process. Results: Only 14 studies met the inclusion criteria. The majority focused narrowly on evaluating interventions, with little attention paid to exploring the broader lived experiences of autistic adults with intellectual disability. We identified 24 self-report measures, yet only two had been validated specifically for individuals with intellectual disability. Furthermore, less than half of the remaining measures reported the use of any adaptations or accommodations such as visual aids or simplified language. Alarmingly, community involvement was almost entirely absent, with no studies incorporating co-production with autistic individuals. Conclusions: This review reveals a critical and urgent need for autism research that genuinely includes and represents autistic adults with intellectual disability. It is imperative that future research prioritizes the development and rigorous validation of accessible self-report tools, expands its focus beyond intervention outcomes, and commits to the meaningful involvement of autistic individuals throughout the research process. Addressing these profound gaps is essential for building an equitable and inclusive body of knowledge that fully recognizes and responds to the diverse experiences within the autistic community. Community Brief: Future research should include these adults' own perspectives to understand their needs and priorities better. This means using methods that allow them to share their experiences directly instead of relying mainly on caregivers or others to speak on their behalf. Researchers also need to use self-report measures more often, especially for topics such as quality of life and well-being, where it's essential to capture the person's own viewpoint.

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
100
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
13 / 100 (13,0 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
36 / 503 (7,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 36 / 163 (22,1 %). Auteurices cité·es distinct·es identifié·es comme autistes : 35 / 461 (7,6 %).
Occurrences citées rattachées à la base AutiHub
163 / 503 (32,4 %)
Auteurices cité·es distinct·es rattaché·es : 139 / 461 (30,2 %)
Occurrences rattachées, non identifiées comme autistes
127 / 163 (77,9 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 127 / 503 (25,2 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 104 / 139 (74,8 %).
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