Elizabeth Fein, Duquesne University

Autism is an extraordinarily contested condition. To some, it is a devastating disease; to others, it is a valued aspect of identity. Young people growing up with an autism spectrum diagnosis face the task of reconciling these two seemingly incompatible understandings of their condition, in the context of their own developing identities. How do they do it, and what can we learn from their creativity and wisdom?

Based on several years of ethnographic fieldwork with youth on the autism spectrum, their families, and the professionals who work with them, this talk will explore the way people affected by autism spectrum conditions negotiate the meanings of these diagnoses in the spaces where they live, work, play, and love in their everyday lives. Medicalized understandings of autism as damaging disease or as hardwired neurogenetic identity are insufficient to capture the full meanings of autism as it is lived – the way it brings both vulnerability and strength, creates both alienation and community, and constitutes the self while also profoundly disrupting it. Instead, youth on the spectrum draw on an alternative shared mythology out of fantasy literature, video games and other speculative fictions to conceptualize their condition, re-envisioning themselves as mutant, hybrid, permeable creatures. In doing so, they invite us to transcend the limitations of our bounded bodies, imagining a broader and more inclusive conception of what it means to be ourselves. 

Elizabeth Fein is an assistant professor of psychology at Duquesne University and author of Living on the Spectrum: Autism and Youth in Community (NYU Press, 2020). A licensed clinical psychologist and psychological anthropologist, she is the co-editor of Autism in Translation: An Intercultural Conversation on Autism Spectrum Conditions (Palgrave, 2018). Her presentation is sponsored by the College of Liberal Arts and Social Sciences Critical Engagements initiative.