Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India.
Goa families carry heavy autism care alone and crave practical guidance, a pattern now confirmed across three continents.
01Research in Context
What this study did
Researchers talked to 28 parents of children with autism in Goa, India. They asked open questions about daily life, stress, and help received.
The team recorded stories, coded themes, and mapped how families coped. No numbers, just voices.
What they found
Parents felt judged by neighbors and teachers. Many hid the diagnosis to avoid shame.
Doctors gave little guidance. Families pieced together advice from relatives, holy men, and the internet. Most said they were ‘managing alone.’
How this fits with other research
McGonigle et al. (2014) in Singapore later showed concrete skills, not positive thinking, protect family life. This extends Gauri’s finding that families want practical know-how, not just sympathy.
Greene et al. (2019) in the U.S. found unmet professional needs worsen caregiver depression. Their numbers back Gauri’s stories: no expert help equals bigger mental-health hit.
Whitaker (2002) in the U.K. already showed parents want play and language tips. Gauri echoes this in India, proving the wish list crosses cultures.
Menezes et al. (2021) counted unmet mental-health needs in kids with ASD plus ID. Their data widen Gauri’s picture: service gaps hurt both child and parent.
Why it matters
If you serve South-Asian families, expect stigma and silence. Offer short, clear handouts in local languages. Link parents to low-cost local groups. Schedule joint meetings so families meet others like them. One concrete step: start each intake by asking, ‘Who in your life knows about the diagnosis?’ Then plan how to grow that circle safely.
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02At a glance
03Original abstract
Autism Spectrum Disorders (ASD) are increasingly recognized in developing countries like India. However, little is known about the experiences of parents raising a child with ASD. This study aimed to describe the experiences of families in Goa, India with a view to understanding the unmet needs of families raising a child with ASD. Twenty in-depth interviews and nine focus group discussions were carried out with families of children with ASD and key community stakeholders such as special educators, teachers, and parents of typically developing children. This qualitative data was triangulated to explore the experiences, life impact, and unmet needs of raising a child with ASD. Key findings suggest that raising a child with ASD puts a tremendous strain on families due to competing commitments, often leading to initial social withdrawal with later reintegration into social networks. Second, the impact is multidimensional, involving the personal sphere but also extending into the wider community with negative experiences of discrimination. Third, parents actively respond to these challenges through a range of approaches with help from existing and new social support networks and health care providers. Fourth, professionals from the health, education, and religious sectors have a low awareness of the unique needs of families living with ASD which leads to a considerable economic and emotional burden on families. Finally, as a consequence of these experiences, several unmet needs can be identified, notably for supporting increasingly isolated families and the limited access to multidisciplinary evidence-based services for ASD. Autism Res 2012, 5: 190-200. © 2012 International Society for Autism Research, Wiley Periodicals, Inc.
Autism research : official journal of the International Society for Autism Research, 2012 · doi:10.1002/aur.1225