From Misinterpretation to Identity Affirmation: Preliminary Narratives of Black Youth with Neurodevelopmental Disabilities

Background and Purpose: Decades of research indicate that Black youth with neurodevelopmental disabilities (NDDs) experience persistent diagnostic and educational inequities, yet little has focused on how these inequities are interpreted by youth themselves or how they shape developing understandings of self. Because Black youth with NDDs remain underrepresented in research that centers their own narratives and lived experiences, less is understood about how these inequitable responses to difference are encountered and carried into identity development. This study examines how Black youth with NDDs describe diagnosis as a social experience, often shaped by being interpreted before they have language to interpret themselves.

Methods: Using constructivist grounded theory methodology, this study draws on preliminary in-depth qualitative interviews with 10 Black youth with NDDs in Canada, ages 16 to 21. Participants were recruited through online flyers and national community agencies; all identified as Black, and the sample included mostly females (70% female, 30% male), with diagnoses including attention deficit hyperactivity disorder (ADHD), autism, dyspraxia, generalized anxiety disorder (GAD), and learning disabilities. Interviews explored participants’ accounts of the diagnosis process and emerging understandings of self, alongside their experiences navigating everyday environments shaped by neurotypical norms and racialized social responses. Interviews were transcribed, and preliminary analysis involved iterative coding and constant comparison to identify emerging patterns in how diagnosis was interpreted, negotiated, delayed, or otherwise made meaningful across social contexts.

Results: Preliminary analysis identified several interconnected themes in how participants described diagnosis and identity across everyday settings. One recurring theme involved school as an early site of misinterpretation, where neurodevelopmental differences were often understood through racialized assumptions about behaviour. Participants described being disciplined more harshly, labeled as disruptive, and positioned negatively within classroom environments before their needs were meaningfully recognized. A second theme highlighted tension within home and family life, particularly where developmental differences were difficult to name or were interpreted through expectations surrounding behaviour, responsibility, and/or culture. Participants often described moving between contexts in which their experiences carried different meanings, creating uncertainty in how they understood themselves. A further theme centered on identity affirmation, with participants describing creative expression and neuro-affirming community spaces as important in developing stronger self-understanding and more positive ways of interpreting difference.

Conclusions and Implications: These preliminary findings extend existing scholarship by showing how racialized institutional experiences are interpreted by Black youth themselves and how those interpretations become part of identity development. Findings suggest that diagnosis emerges through earlier encounters with misrecognition and uneven response, where difference is often given meaning before formal identification occurs. For social work, these findings highlight the importance of attending more carefully to how Black youth with NDDs are understood within schools, family systems, and other child-serving contexts where social workers often play a role in recognition, advocacy, and support. Centering youth narratives also strengthens social work’s commitment to social justice by showing how institutional responses carry developmental implications, shaping how Black youth come to understand themselves and how support becomes available to them over time.