Au-delà du diagnostic : établir les priorités de recherche avec la communauté neurodivergente

Titre original en anglais : Beyond Diagnosis: Setting Research Priorities with the Neurodivergent Community

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Ostaszewska, A., Harper, G., Davis, R., & Joseph, H. (2025). Beyond Diagnosis: Setting Research Priorities with the Neurodivergent Community. Neurodiversity, 3. https://doi.org/10.1177/27546330251374236

Publication date: 01/10/2025 Ajout dans AutiHub: 14/09/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
4
Auteur·ices de la publication identifié·es comme autistes
1 / 4 (25,0 %)
  1. Agata Ostaszewska
  2. Georgia Harper *
  3. Rachael Davis
  4. Holly Joseph

Résumé

La recherche sur la neurodiversité reste fortement façonnée par les catégories diagnostiques, qui semblent de plus en plus inadéquates pour rendre compte des réalités complexes et vécues des personnes neurodivergentes. Ces étiquettes catégorielles occultent souvent les obstacles sociaux et structurels qui façonnent les expériences quotidiennes et limitent l'utilité de la recherche pour concevoir des services inclusifs. En réponse à cette lacune, notre étude visait à établir des priorités de recherche dirigées par la communauté qui transcendent les frontières diagnostiques. En employant un processus rigoureux en trois étapes, comprenant une recherche participative, une enquête à grande échelle et un atelier de parties prenantes, nous avons impliqué tout au long du processus des personnes neurodivergentes ayant des expériences diagnostiques diverses et s'auto-identifiant de diverses manières. Les dix principales priorités qui en résultent révèlent des obstacles systémiques ancrés dans les services de santé mentale, d'éducation, de protection sociale, de prestations sociales et de neurodéveloppement. Elles mettent également en évidence, de manière cruciale, des formes de marginalisation qui traversent les catégories diagnostiques, notamment la stigmatisation intersectionnelle, la discrimination institutionnelle et les modèles de services excluants. Notre étude apporte deux contributions essentielles : premièrement, elle met au premier plan les priorités de recherche produites par les communautés neurodivergentes elles-mêmes ; deuxièmement, elle propose un changement urgent des pratiques de recherche, vers des modèles qui placent l'expérience vécue au centre, remettent en cause les normes catégorielles et prennent en compte les dimensions structurelles de l'exclusion. En perturbant le statu quo diagnostique, ce projet propose un programme de recherche sur la neurodiversité plus inclusif et davantage ancré dans le social. Résumé grand public Une grande partie des recherches sur la neurodivergence se concentre sur des diagnostics formels, tels que l'autisme ou la dyslexie. Cependant, de nombreuses personnes neurodivergentes estiment que ces étiquettes ne reflètent pas leurs expériences réelles et n'aident pas à améliorer les services. Ce projet a demandé à des personnes neurodivergentes issues de différents milieux sur quoi la recherche devrait plutôt se concentrer. Au moyen d'ateliers, d'enquêtes et de discussions, elles ont déterminé les dix principales priorités pour les recherches futures. Celles-ci comprennent la résolution de problèmes dans les soins de santé mentale, l'éducation et les services sociaux, ainsi que la lutte contre la discrimination et la stigmatisation. Le projet montre comment la recherche peut être plus inclusive en écoutant directement les personnes neurodivergentes, plutôt qu'en s'appuyant sur des catégories diagnostiques étroites.

Neurodiversity research remains heavily shaped by diagnostic categories, which increasingly appear inadequate for capturing the complex, lived realities of neurodivergent people. These categorical labels often obscure the social and structural barriers that shape daily experiences and limit the utility of research for designing inclusive services. Responding to this gap, our study sought to establish community-led research priorities that transcend diagnostic boundaries. Employing a rigorous, three-stage process – comprising participatory research, a large-scale survey, and a stakeholder workshop – we engaged neurodivergent individuals with diverse diagnostic and self-identified experiences throughout. The resulting top ten priorities expose embedded systemic barriers across mental health, education, social care, welfare, and neurodevelopmental services. Crucially, they also highlight forms of marginalisation that cut across diagnostic lines, including intersectional stigma, institutional discrimination, and exclusionary service models. Our study makes two key contributions: first, it foregrounds research priorities generated by neurodivergent communities themselves; second, it proposes an urgently needed shift in research practice – towards models that centre lived experience, challenge categorical norms, and attend to the structural dimensions of exclusion. By disrupting the diagnostic status quo, this project offers a more inclusive and socially grounded agenda for neurodiversity research. Lay Abstract Much research about neurodivergence focuses on formal diagnoses such as autism or dyslexia. But many neurodivergent people feel these labels don’t reflect their real experiences or help improve services. This project asked neurodivergent people from different backgrounds what research should focus on instead. Through workshops, surveys, and discussions, they identified the top ten priorities for future research. These include addressing problems in mental health care, education, and social services, as well as tackling discrimination and stigma. The project shows how research can be more inclusive by listening directly to neurodivergent people, rather than relying on narrow diagnostic categories.

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Références citées
79
Avec un DOI
62
Sans DOI, à partir du texte brut de la bibliographie
17
21 / 79 (26,6 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
10 / 79 (12,7 %)
Références avec noms d’auteurices détectés
70 / 79 (88,6 %)
Sans nom d’auteurice détecté
9
Sans titre structuré
9
Sans identifiant stable
17
Références avec noms bruts d’auteurices restant à vérifier
8
Références avec problème de récupération des métadonnées externes
0
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Noms d’auteurices détectés dans la bibliographie citée
277
À partir du DOI ou de métadonnées externes
276
À partir du texte brut validé de la bibliographie
1
Noms bruts déjà validés
1
Noms bruts restant à vérifier
10
141 / 277 (50,9 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 136 / 277 (49,1 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
42 / 277 (15,2 %)
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 : 42 / 141 (29,8 %). Personnes distinctes identifiées comme autistes : 35 / 245 (14,3 %).
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