Parents planning for the long-term future of adults with ASD in India: "But that's a maybe. It's still a maybe".
In India, most families caring for adults with autism have no long-term plan because fear of the unknown blocks the first step.
01Research in Context
What this study did
Ghosh (2023) talked to families in India who care for adults with autism. The team asked how they plan for the future and what stops them.
They used open interviews so parents could speak freely. The study looked at fears, money, and support needs.
What they found
Four in ten families had not started any long-term plan. The top reason was "fear of the unknown."
Parents worried about who would care for their adult child after they die. They also felt unsure about laws, money, and housing.
How this fits with other research
Chou et al. (2009) saw the same worry in older caregivers of adults with ID. Age, not diagnosis, seems to drive the fear.
Ferguson et al. (2025) show that even in the US, families hit walls when they try to set up SSI or guardianship. The barrier is red tape, not culture.
Huang et al. (2026) add a twist: Chinese parents re-define independence as "happy together" rather than living alone. This softens the fear, showing the same barrier can be viewed differently.
Why it matters
If you work with adults or their aging parents, start the future-planning talk early. Offer a simple checklist: housing, legal, financial, social. Break each step into tiny actions so the unknown becomes known. One small planned move today can cut the fear that freezes families.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Open a 10-minute future-planning chat: ask the parent to name one worry and write the very first tiny action to address it.
02At a glance
03Original 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.
Journal of autism and developmental disorders, 2023 · doi:10.1111/j.1741-1130.2008.00196.x