Beyond diagnosis: setting research priorities with the neurodivergent community

Ostaszewska, A., Harper, G., Davis, R. and Joseph, H. ORCID: https://orcid.org/0000-0003-4325-4628 (2025) Beyond diagnosis: setting research priorities with the neurodivergent community. Neurodiversity, 3. ISSN 2754-6330 doi: 10.1177/27546330251374236

Abstract/Summary

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.

Item Type	Article
URI	https://centaur.reading.ac.uk/id/eprint/123921
Identification Number/DOI	10.1177/27546330251374236
Refereed	Yes
Divisions	Arts, Humanities and Social Science > Institute of Education > Language and Literacy in Education
Publisher	Sage
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