Parenting a Child with Autism in India: Observations from a Parent-Child Training Program

Rachel Brezis, Nidhi Singhal, Tamara Daley, Merry Barua, Tom Weisner

In the absence of appropriate educational and therapeutic services for autism in India, parents of children with autism shoulder much of the responsibility for care and education of their children. Action for Autism (AFA), India, an NGO founded by a group of Indian mothers of children with autism, initiated a Parent-Child Training Program (PCTP) in 2000 to provide practical and theoretical knowledge on autism to parents, while instilling in participants a philosophy of acceptance and empowerment. To date, the PCTP has trained over 340 participants throughout India, who have come to New Delhi, with their child, for 3-month training sessions. The current study presents qualitative data from a mixed-methods evaluation of the program, conducted as a collaboration between the UCLA Center for Culture and Health, and AFA. The study followed three cohorts of parents (a total N of 40) during their 3 months of training in Delhi, aiming to assess whether parents increase their knowledge of autism, their sense of competence, their degree of acceptance and empowerment, and decrease their stress. Parents thoughts about their child and their relationship with their child were recorded, and their 1-on-1 interactions with the child were videotaped, at the start and end of the program. These data, along with 7 months of participant observation at AFA, are used to glean a better understanding of the particular challenges faced by families of children with autism in India, and their unique strategies for coping and caring.