Neurodiversity Matters: An Ethnographic Investigation into Discourse, Practice, and Identity

Background and Purpose: The language and ideas of neurodiversity have been rapidly expanding across the social work landscape. Based on the work of Judy Singer and Harold Blume, the neurodiversity paradigm asserts humans are different in how we sense, communicate, learn, and understand. As a result, ways of being that have often been framed as pathologies to be cured and lamented should instead be conceptualized as human diversity, to be responded to and accommodated in non-hierarchical ways. Neurodiversity advocates have called for more inclusive and just practices that recognize the expertise and value of people who have diagnoses/ identities of autism, ADHD, mental illness/ Madness, learning disabilities, and others that extend beyond the “neurotypical”. In recent years, organizations, researchers, and providers have started to respond to calls to incorporate the ideas and commitments of neurodiversity, however there are concerns that such changes have been superficial and incomplete.

Methods: We used institutional ethnography to investigate the definition and impact of neurodiversity in people’s lives from structural perspectives. The research team and the advisory board consisted of researchers, advocates, and students who identify with neurodiversity themselves, have family members who identify with neurodiversity, and/or who specialize in research with people who identify with neurodiversity. Sixty ethnographic interviews were conducted in Ontario, Canada. Participants were selected from three groups: people who identified with neurodiversity (e.g. as autistic, ADHD, Mad, neurodivergent); people who use neurodiversity in their work as service providers (e.g. social workers, counsellors, crisis workers, educators); and people who have family members who identify with neurodiversity. Most of the participants identified with more than one of these categories. Interviews were completed from 2019-2021, and were conducted in-person until March 2020, then on Zoom thereafter. Interviews were audio-recorded and transcribed, then analyzed using NVivo for themes that revealed how social relations organized individual experiences.

Results: The term, “neurodiversity” has been circulating widely in some settings, but still largely unheard of in others. In particular, the concerns were raised throughout the project about the limited training that social workers and other providers receive about working with people who are neurodiverse/ neurodivergent. Neurodiversity-identified participants described searching for providers who were open to the idea of neurodiversity, even educating their providers in order to prevent inappropriate interventions and stereotyping. Providers who also identified with neurodiversity described facing additional barriers throughout their training and employment. Family members described frustrations at the assumptions that providers made about their family members, and about the limited supports that were available for their families.

Conclusions and Implications: The systemic separation of services that focus on children from services that support adults shapes many of the challenges identified by our participants, since individuals and families needed to do additional work to learn about and connect with the larger community of neurodiversity-identified people who might be able to offer guidance and support. Finally, we will examine how social work can critically assess our current practices and training around neurodiversity, particularly where these rely on outdated and flawed research.