A qui appartient cette expertise ? Éléments en faveur des adultes autistes en tant qu'experts essentiels de l'autisme

Titre original en anglais : Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts

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Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2017). Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts. Frontiers in Psychology, 8, 438-438. https://doi.org/10.3389/fpsyg.2017.00438

Date de publication: 28/03/2017 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI) Texte intégral

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Auteurs

Auteur·ices des publications
5
Auteur·ices de la publication identifié·es comme autistes
1 / 5 (20,0 %)
  1. Kristen Gillespie-Lynch
  2. Steven K. Kapp *
  3. Patricia J. Brooks
  4. Jonathan Pickens
  5. Ben Schwartzman

Résumé

L'accord des adultes autistes et non autistes avec les connaissances scientifiques sur l'autisme, leur manière de définir l'autisme et leur adhésion à des conceptions stigmatisantes de l'autisme n'ont pas été examinés auparavant. Au moyen d'une enquête en ligne, nous avons évalué les connaissances sur l'autisme et la stigmatisation chez 636 adultes ayant des liens variés avec l'autisme, y compris des personnes autistes et des membres de la famille nucléaire. Les participants autistes présentaient des connaissances davantage fondées scientifiquement que les autres. Ils étaient plus susceptibles de décrire l'autisme de manière expérientielle ou comme une différence neutre, et s'opposaient plus souvent au modèle médical. Les participants autistes et les membres de leur famille ont signalé une stigmatisation plus faible. Une plus grande adhésion à l'importance de normaliser les personnes autistes était associée à une stigmatisation accrue. Les résultats suggèrent que les adultes autistes devraient être considérés comme des experts de l'autisme et impliqués en tant que partenaires dans la recherche sur l'autisme.

Autistic and non-autistic adults' agreement with scientific knowledge about autism, how they define autism, and their endorsement of stigmatizing conceptions of autism has not previously been examined. Using an online survey, we assessed autism knowledge and stigma among 636 adults with varied relationships to autism, including autistic people and nuclear family members. Autistic participants exhibited more scientifically based knowledge than others. They were more likely to describe autism experientially or as a neutral difference, and more often opposed the medical model. Autistic participants and family members reported lower stigma. Greater endorsement of the importance of normalizing autistic people was associated with heightened stigma. Findings suggest that autistic adults should be considered autism experts and involved as partners in autism 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
96
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
15 / 96 (15,6 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
18 / 283 (6,4 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 18 / 92 (19,6 %). Auteurices cité·es distinct·es identifié·es comme autistes : 10 / 248 (4,0 %).
Occurrences citées rattachées à la base AutiHub
92 / 283 (32,5 %)
Auteurices cité·es distinct·es rattaché·es : 64 / 248 (25,8 %)
Occurrences rattachées, non identifiées comme autistes
74 / 92 (80,4 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 74 / 283 (26,1 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 54 / 64 (84,4 %).
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