title: Adults with autism in India: a mixed-method approach to make meaning of daily routines.
abstract: Although individuals with Autism Spectrum Disorder (ASD) have been diagnosed in India for over fifty years, virtually nothing is known about the social circumstances of adults, their daily lives, and their families. Where are adults with autism? How do they spend their time? Who are they with, and what are they doing all day? 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 associated with these routines during a study collected from January through June, 2013. Whether or not they attended a structured setting during the day (59% did so), adults engaged in some 20 activities both inside and outside their home. Contrary to our expectations, most adults were not "hidden" and were out in public at least on occasion. Higher functioning adults were more likely to attend a structured setting, but parents described challenging behaviors, both adult and parent preference, and lack of options as reasons that adults stayed home. The amount of time adults spent outside their home was not associated with parent reported stress, but stress was significantly higher for mothers who were employed. Most families described adaptation to caring for their adult children. A partnership with an Indian nongovernmental organization provided mechanisms to amplify our research findings, making them meaningful to our participants and others.
authors.affiliation: Westat, 1009 Slater Road, Durham, NC 27703, USA. Electronic address: TamaraDaley@westat.com.
authors.forename: Tamara C
authors.initials: TC
authors.lastname: Daley
authors.affiliation: UCLA Department of Psychiatry, NPI-Semel Institute for Neuroscience, Center for Culture and Health, 760 Westwood Plaza, Box 62, Los Angeles, CA 90024-1759, USA.
authors.forename: Thomas
authors.initials: T
authors.lastname: Weisner
authors.affiliation: Action For Autism, Pocket 7 & 8, Jasola Vihar, New Delhi 110025, India.
authors.forename: Nidhi
authors.initials: N
authors.lastname: Singhal
mesh_terms: D000328:Adult; D001321:Autistic Disorder / Q000453:epidemiology* / Q000523:psychology*; D003142:Communication; D005260:Female; D006801:Humans; D007194:India; D007398:Interpersonal Relations; D008297:Male; D010290:Parents / Q000523:psychology; D012959:Socioeconomic Factors; D013315:Stress, Psychological / Q000453:epidemiology
keywords: Autism Spectrum Disorders; Daily routine; Disability; Ecocultural; India