The book explores the lived reality of parenting and caring for children with autism in contemporary urban India. It is based on a qualitative, ethnographic study of families of children with autism as they negotiate the tricky terrain of identifying their child s disability, obtaining a diagnosis, accessing appropriate services and their on-going efforts to come to terms with and make sense of their child s unique subjectivity and mode of being. It examines the gendered dimensions of coping and care-giving and the differential responses of mothers and fathers, siblings and grandparents and the extended family network to this complex and often extremely challenging condition. The book tackles head on the sombre question, What will happen to the child after the parents are gone ? It also critically examines the role of the state, civil society and legal and institutional frameworks in place in India and undertakes a case study of Action for Autism; a Delhi-based NGO set up by parents of children with autism. This book also draws upon the author s own engagement with her child' s disability and thus lends an authenticity born out of lived experience and in-depth understanding.
It is a valuable addition to the literature in the sociology of the family and disability studies.
Chapter 1. Mapping the Terrain: Examining Discourses on Disability and the Family.- Chapter 2. "There is something wrong with my child": Encounter with autism.- Chapter 3. Unending Care and an Uncertain Future: The Challenges of Parenting a Child with Autism.- Chapter 4. Shrinking Circles of Support: The Urban Family in Transition.- Chapter 5. Disability, Society and State: New mobilizations and movements.- Chapter 6. Conclusion: Looking Back, Looking Forward.