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: 1 Oct 2025 Added to AutiHub: 14 Sep 2026 Type: Article Article language: English
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Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)
  1. Agata Ostaszewska
  2. Georgia Harper *
  3. Rachael Davis
  4. Holly Joseph

Abstract

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.

Bibliography cited by this reference

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Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 14 Sep 2026 18:08.

Cited references
79
With a DOI
62
Without a DOI, from raw bibliography text
17
21 / 79 (26.6%) cited references include at least one author identified as autistic.
References with data to complete
10 / 79 (12.7%)
References with detected author names
70 / 79 (88.6%)
Without detected author names
9
Without a structured title
9
Without a stable identifier
17
References with raw author names still to review
8
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
277
From DOI or external metadata
276
From validated raw bibliography text
1
Raw names already validated
1
Raw names still to review
10
141 / 277 (50.9%) names are linked to an author already present in AutiHub. 136 / 277 (49.1%) names are not yet linked.
Names linked to a person identified as autistic
42 / 277 (15.2%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 42 / 141 (29.8%). Distinct people identified as autistic: 35 / 245 (14.3%).
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