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Palgrave Macmillan

Parents of Children with Autism

An Ethnography

ISBN 9781137436221
Publication Date July 2014
Formats Hardcover Ebook (EPUB) Ebook (PDF) 
Publisher Palgrave Macmillan

Skyrocketing rates of autism diagnoses have led teams of scientists and researchers to invest extensive amounts of funds and energy in the study of autism genes, causes, and cures. Such research focuses on autism as an entity, not necessarily those affected by autism. Conversely, this book explores the autism world by considering the everyday experiences of living with autism. Displaying the unique perspective of parents of children with autism by recounting parents' stories, this ethnography demonstrates the diffi culties of the early moments of becoming an autism parent: obtaining the offi cial diagnosis, receiving Early Intervention services, and navigating relationships with friends, family, and loved ones. Through descriptive fi eld notes from an eighteen-month study, de Wolfe examines the uniqueness of parents' circumstances as they are shaped by their children's diagnosis. Parents of Children with Autism provides an intimate glimpse into the lives of autism parents who advocate tirelessly for and celebrate fully the lives of their children, one day at a time.

Juliette de Wolfe holds a PhD in Anthropology and Education from Teachers College, Columbia University, USA.

1. Anthropologizing Experiences of Autism
2. Meet the Parents
3. Re-charting Territories, Redefining Roles: The Issue of Relationships
4. Peculiarities and Particularities: The Issue of Bodies
5. Navigations and Limitations: The Issue of Institutions
6. Sharing and Fighting: The Issue of Communication and Education
Concluding Remarks


"A poignant, informative, and deeply thought-provoking study of parents as 'autism warriors'. Unlike those who have gone before her, de Wolfe shifts our focus away from families and organizations with ample resources. She looks at working-class parents who must fight for their kids' needs in contexts framed by limited resources and a lack of specialized, day-to-day help. This is a study of grassroots organizing from the ground up, a must read not only for other parents but for professionals, family members, and neighbors as a means to learn how autism parenting is inescapably a twenty-four-seven job, one performed with perseverance, determination, and dignity." - Lesley A. Sharp, Ann Whitney Olin Professor of Anthropology, Barnard College, USA; Senior Research Scientist in Sociomedical Sciences, Mailman School of Public Health, Columbia University, USA
"A sophisticated, sensitive, and extremely detailed and perceptive account of what it means to be an 'autism parent' in contemporary US society. De Wolfe does not parachute in and out of her informants' lives, but stays with them over the long haul and learns to view the world—and their children—through their eyes. Exemplary in terms of its concern for the dignity and humanity of its subjects, whose lives and struggles it depicts with great empathy." - Gil Eyal, Professor of Sociology, Columbia University, USA
"With this book, de Wolfe makes a triply significant contribution to defining discourses of the moment: autism, diversity, and education. With her steady, sensitive voice, she shows us how autism is best understood not as a static label but as a dynamic lived experience, and how conceptions of diversity are incomplete if they are not inclusive of disability. She explores how education is, in its most robust application to human development, the acquisition of new repertoires of practice in response to meaningful contextual demands." - Katherine Richardson Bruna, Associate Professor of Multicultural Education, Iowa State University, USA
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