Les articles influents sur la génétique de l'autisme montrent-ils des signes d'engagement auprès de la communauté autiste ?

Titre original en anglais : Do Influential Articles on the Genetics of Autism Show Evidence of Engagement With the Autistic Community?

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Kaljusto, H. K., Wilson, E., & Fletcher‐Watson, S. (2025). Do Influential Articles on the Genetics of Autism Show Evidence of Engagement With the Autistic Community? American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 198(6), 46-61. https://doi.org/10.1002/ajmg.b.33030

Date de publication: 24/04/2025 Ajout dans AutiHub: 18/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
3
Auteur·ices de la publication identifié·es comme autistes
1 / 3 (33,3 %)
  1. Heidi Kristiina Kaljusto
  2. Emma Wilson *
  3. Sue Fletcher‐Watson

Résumé

RÉSUMÉ Les recherches sur l'étiologie et la base génétique de l'autisme continuent d'orienter une grande partie de la recherche sur l'autisme, mais des rapports émergent selon lesquels ces recherches ne s'alignent pas sur les priorités des personnes autistes. L'engagement des personnes autistes dans le processus de recherche est un moyen essentiel de prendre en compte leurs perspectives. Nous avons examiné si la recherche influente sur la génétique de l'autisme montre des signes d'engagement auprès de la communauté autiste au moyen d'indicateurs présents dans les textes d'articles publiés. Grâce à l'exploration de texte des résumés d'articles mentionnant les mots « autism » ou « autistic », nous avons constaté une prévalence minimale d'une terminologie progressiste associée à l'autisme. Nous avons également conçu un nouveau système de notation afin d'évaluer trois caractéristiques de l'engagement auprès de la communauté autiste : la présence d'un langage non stigmatisant, la référence aux priorités de la communauté et l'utilisation de méthodes participatives. Nous avons examiné 149 articles publiés dans des revues de premier plan sur l'autisme et la génétique. Des signes minimes d'engagement auprès de la communauté autiste ont été observés pour les trois caractéristiques. Les chercheurs en génétique qui se concentrent sur l'autisme devraient saisir les occasions de s'engager auprès de la communauté autiste afin de rapprocher leurs travaux de ses priorités, ce qui apporterait des bénéfices scientifiques et moraux.

ABSTRACT Investigations into the etiology and genetic basis of autism continue to drive much autism research, yet reports are emerging of this research not aligning with priorities of autistic people. Engagement of autistic people in the research process is a key way to take their perspectives on board. We investigated whether influential genetic autism research shows evidence of engagement with the autistic community via indicators in published article texts. Through text mining of the abstracts of articles mentioning the words “autism” or “autistic,” we found minimal prevalence of progressive terminology associated with autism. We also devised a novel rating system to assess three hallmarks of autistic community engagement: presence of non‐stigmatizing language, referencing community priorities, and the use of participatory methods. We reviewed 149 articles within leading autism and genetic journals. Minimal evidence of engagement with the autistic community was found within all three hallmarks. Genetics researchers focused on autism should embrace opportunities to engage with the autistic community to bring their work into closer alignment with their priorities, yielding scientific and moral benefits.

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 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 11:31.

Références citées
68
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
15 / 68 (22,1 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
35 / 592 (5,9 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 35 / 138 (25,4 %). Auteurices cité·es distinct·es identifié·es comme autistes : 26 / 550 (4,7 %).
Occurrences citées rattachées à la base AutiHub
138 / 592 (23,3 %)
Auteurices cité·es distinct·es rattaché·es : 106 / 550 (19,3 %)
Occurrences rattachées, non identifiées comme autistes
103 / 138 (74,6 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 103 / 592 (17,4 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 80 / 106 (75,5 %).
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