Challenges, Coping Strategies, and Unmet Needs of Families with a Child with A utism Spectrum Disorder in G oa, I ndia

Gauri Divan · Vivek Prabhakar Vajaratkar · Miraj U. Desai · Luisa Strik Lievers · Vikram Patel

210 citations0/0 files storedAutism Research

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Family and Disability Support Research Autism Spectrum Disorder Research Child Nutrition and Feeding Issues

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.

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References

2006“We’re tired, not sad”: Benefits and burdens of mothering a child with a disability 2008Living in a World of Our Own: The Experience of Parents Who Have a Child With Autism 2002Gender and coping: the parents of children with high functioning autism 2009“My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives 2011Towards achievement of universal health care in India by 2020: a call to action 2006Coping over time: the parents of children with autism 2007Coping strategies used by parents of children with autism 2009Searching for acceptance: Challenges encountered while raising a child with autism

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2016Stigma, explanatory models and unmet needs of caregivers of children with developmental disorders in a low-income African country: a cross-sectional facility-based survey 2021Mothers’ Experiences and Challenges Raising a Child with Autism Spectrum Disorder: A Qualitative Study 2012The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder 2019The parenting experiences and needs of Asian primary caregivers of children with autism: A meta-synthesis

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