Beyond Diagnosis: Setting Research Priorities with the Neurodivergent Community

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.