Living on the Spectrum
Autism and Youth in Community
Anthropologies of American Medicine: Culture, Power, and Practice
Published by: NYU Press
304 pages, 152.00 x 229.00 mm
- ISBN: 9781479889068
- Published: July 2020
Honorable Mention, 2020 Stirling Prize for Best Published Work in Psychological Anthropology, given by the Society for Psychological Anthropology
Honorable Mention, New Millennium Book Award, given by the Society for Medical Anthropology
How youth on the autism spectrum negotiate the contested meanings of neurodiversity
Autism is a deeply contested condition. To some, it is a devastating invader, harming children and isolating them. To others, it is an asset and a distinctive aspect of an individual’s identity. How do young people on the spectrum make sense of this conflict, in the context of their own developing identity?
While most of the research on Asperger’s and related autism conditions has been conducted with individuals or in settings in which people on the spectrum are in the minority, this book draws on two years of ethnographic work in communities that bring people with Asperger’s and related conditions together. It can thus begin to explore a form of autistic culture, through attending to how those on the spectrum make sense of their conditions through shared social practices.
Elizabeth Fein brings her many years of experience in both clinical psychology and psychological anthropology to analyze the connection between neuropsychological difference and culture. She argues that current medical models, which espouse a limited definition, are ill equipped to deal with the challenges of discussing autism-related conditions. Consequently, youths on the autism spectrum reach beyond medicine for their stories of difference and disorder, drawing instead on shared mythologies from popular culture and speculative fiction to conceptualize their experience of changing personhood.
In moving and persuasive prose, Living on the Spectrum illustrates that young people use these stories to pioneer more inclusive understandings of what makes us who we are.
Incredibly well-written… Fein threads answers to some of the most pressing questions around autism in a delicate and deliberate way. There have been quite a few monographs on autism in the last few years, but I don’t mind saying – and I say this as the author of one of them myself! – this is the best one. ~Des Fitzgerald, University of Exeter
An extraordinary journey into the lives of autistic youth. Fein’s empathic understanding of autism jumps from every page of this beautiful and intelligent book, as we learn how autistic people produce their own knowledge and ways of being, stake out their place as agents rather than as patients, and resist being passive recipients of clinical or quantitative labels. ~Roy Richard Grinker, author of Unstrange Minds: Remapping the World of Autism
An amazing book—beautifully written, brilliantly conceived, precisely observed. The combination of an anthropologist’s eye and a clinician’s sensibility creates remarkable insight. Anyone interested in autism should read it. ~Tanya Marie Luhrmann, Howard H. and Jessie T. Watkins University Professor of Anthropology, Stanford University
I would easily recommend this one. I hope it gets read and shared by as many people who work in the medical field as possible, plus many more (perhaps it should be a library staple). ~Treeshallow Musings
The author’s writing style is thoughtful and thought provoking. Brilliantly, sharply observed and immersive ... Fein’s writing is rich with experience, fondness for her participants and humour ... With resonance beyond the field of autism study, the book would be useful to any student engaging in ethnographic work. ~Sociology of Health and Illness
Living on the Spectrum is written in an engaging, readable, and sometimes poetic style, which enhances its ability to reach a diverse audience beyond medical anthropologists interested in autism. ~Medical Anthropology Quarterly