Parents planning for the long-term future of adults with ASD in India: "But that's a maybe. It's still a maybe".

Abstract

Research on long-term planning for adults with Autism Spectrum Disorder (ASD) in India is non-existent. The mixed-methods study examined caregiver's expectations around the future planning of an adult with ASD and the barriers and facilitators to the future planning. The purposive sample included 139 caregivers to adults and adolescents with ASD who were part of the survey and 25 caregivers who participated in in-depth interviews. 40% of caregivers hadn't started planning for the future.The family was considered the ideal place to age, but perceived and objective barriers impacted caregivers' ability to plan for the future. The most common barrier that impacted all domains of long-term care was the fear of the unknown or the fear that none of the plans would fall in place. The study also identified resources and strategies used by parents to plan. Findings from the study can potentially impact policy, advocacy, and practice.