Culture and Disability: Autism Spectrum Disorder in India
Thomas Weisner, UCLA
Tamara Daley, Westat
Nidhi Singhal, Action for Autism, Delhi
Rachel Brezis, UCLA
Gail Fox Adams, UCLA
Christopher Osborn, UCLA
This presentation will summarize recent research findings from the CBDMH-supported collaborative partnership between Action for Autism (AFA) in Delhi, India, and UCLA: RAFIN (Research on Autism and Families in India). For this meeting, we will provide an overview of the project goals and structure, and summarize some current projects. These include a summary of the summer field study by Gail Adams, “What basic-skills training in autism offers language teachers; data from urban India“, and a report by Christopher Osborn on his CBDMH summer research project “School Inclusion of Children with Autism in Urban India.”. Chris Osborn will present his study in person. We then will describe our studies of adults with autism in India in more detail. Virtually no research is currently available about adults, their daily lives, and their families in India. The greatest gap in the study of adults with autism in India is a basic descriptive picture of their lives. How do adults with autism spend their time? Where are they, who are they with, and what are they doing all day? Does this differ if they are high or low functioning? Is it more stressful for the parent when an adult is home all day, or when an adult has some place to go? And what would be most helpful to parents and adults in urban India right now? A mixed-method approach was used to obtain information on daily routines of 54 adults with ASD living in New Delhi, India, and about parent levels of stress. Adults engaged in a range of activities, both inside and outside their home; the amount of time adults spent outside their home was not associated with parent stress, but stress was significantly higher for mothers who were employed. Most families described adaptation to caring for their adult children at home, although increased availability of autism-specific services for adults and respite care were identified as two factors that might be useful.