Beyond Diagnoses in Neurodiversity
Research type
Research Study
Full title
Beyond Diagnoses: Exploring the needs and priorities of families accessing neurodevelopmental diagnostic services
IRAS ID
357467
Contact name
Silvana Mareva
Contact email
Sponsor organisation
University of Exeter
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
This research addresses a gap in our understanding of neurodiversity and healthcare provision. Traditionally, conditions such as autism and ADHD are defined by distinct profiles, but contemporary evidence suggests that they are poor predictors of individual strengths and needs. Paradoxically, healthcare systems devote most resources to the diagnostic processes rather than providing support. This leads to lengthy assessment waits, impacting the wellbeing of children and families. Service providers acknowledge this and are shifting toward needs-led support, irrespective of diagnostic status. However, research is needed to understand the social considerations and challenges of reducing reliance on diagnoses. This study uses survey methods co- produced by researchers, families, and clinicians to explore the needs and priorities of families seeking neurodevelopmental diagnostic services. It will also delve into their perspectives on traditional diagnostic versus needs-led approaches. By gaining insights from those accessing care, we aim to improve services for neurodivergent children and their families.
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
25/EM/0146
Date of REC Opinion
12 Aug 2025
REC opinion
Further Information Favourable Opinion