Parents of Children with Autism

1. Front Matter

   Pages i-ix

   PDF

2. Introduction: Going to Holland Together

   • Juliette de Wolfe

   Pages 1-5

3. Anthropologizing Experiences of Autism

   • Juliette de Wolfe

   Pages 7-29

4. Meet the Parents

   • Juliette de Wolfe

   Pages 31-46

5. Recharting Territories, Redefining Roles: The Issue of Relationships

   • Juliette de Wolfe

   Pages 47-80

6. Peculiarities and Particularities: The Issue of Bodies

   • Juliette de Wolfe

   Pages 81-110

7. Navigations and Limitations: The Issue of Institutions

   • Juliette de Wolfe

   Pages 111-135

8. Sharing and Fighting: The Issue of Communication and Education

   • Juliette de Wolfe

   Pages 137-160

9. Concluding Remarks

   • Juliette de Wolfe

   Pages 161-167

10. Back Matter

    Pages 169-185

    PDF

In a readable and highly accessible ethnographic account that is shaped by the stories of families and the voices of parents, De Wolfe examines how parents of children with autism navigate the educational and medical systems, understand their own and their children's bodies, and support and educate one another.

• autism
• parents
• qualitative
• ethnography
• children
• communication
• education
• Familie
• Institution
• research
• learning and instruction

"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

Juliette de Wolfe is a Special Education Resource Teacher in the Arlington Public Schools, Arlington, Virginia, USA. She holds a PhD in Anthropology and Education from Teachers College, USA.

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