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

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

À propos de la mention auteur·ice autiste

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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 éditeur (DOI) Texte intégral Source OpenAlex

Cette publication est intégrée dans AutiHub via :

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

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 02/10/2026 17:07.

Références citées
96
Avec un DOI
86
Sans DOI, à partir du texte brut de la bibliographie
10
16 / 96 (16,7 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
3 / 96 (3,1 %)
Références avec noms d’auteurices détectés
96 / 96 (100,0 %)
Sans nom d’auteurice détecté
0
Sans titre structuré
3
Sans identifiant stable
8
Références avec noms bruts d’auteurices restant à vérifier
0
Références avec problème de récupération des métadonnées externes
2
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
283
À partir du DOI ou de métadonnées externes
283
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
0
103 / 283 (36,4 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 180 / 283 (63,6 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
21 / 283 (7,4 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 21 / 103 (20,4 %). Personnes distinctes identifiées comme autistes : 13 / 248 (5,2 %).
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