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Cited by 210Family and Disability Support ResearchAutism Spectrum Disorder ResearchChild Nutrition and Feeding Issues

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

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Divan, Gauri, Vajaratkar, Vivek, Desai, Miraj U., Strik‐Lievers, Luisa, Patel, Vikram·2012·Autism Research
DOI 10.1002/aur.1225PMC PMC4991760
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Abstract

A utism S pectrum D isorders ( ASD ) are increasingly recognized in developing countries like I ndia. However, little is known about the experiences of parents raising a child with ASD . This study aimed to describe the experiences of families in G oa, I ndia 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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  • Among cultures that stigmatize disabilities more generally, an ASD diagnosis in the family can also negatively affect the marriage prospects of siblings and the future of the family given the genetic liability.

    “Furthermore, among cultures that stigmatize disabilities more generally, an ASD diagnosis in the family can also negatively affect the marriage prospects of siblings and the future of the family given the genetic liability (Divan et al. 2012).”

    From The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond (2021) · cites this paper as Divan et al. 2012

    The Results section (“Impact in the Community”; page unavailable) says that, in a setting where arranged marriages are the norm, a child with special needs would affect the marriage prospects of siblings and cousins. It describes stigma and negative labeling, but does not attribute the marriage concern to genetic liability or establish the claimed effect on the family’s future. (LLM, conf=0.86)

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  • Families are often forced to manage the care of an individual with ASD on their own, which often involves enlisting the help of extended family and community members.

    “Families are often forced to manage the care of an individual with ASD on their own, which often involves enlisting the help of extended family and community members (Divan et al. 2012).”

    From The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond (2021) · cites this paper as Divan et al. 2012

    The Results (Impact on Personal Lives: Competing Commitments; page unavailable) say parents bore substantial caregiving demands and that extended family, especially grandparents, often helped them manage. The Discussion describes limited services, but the Results (Impact in the Community; page unavailable) do not establish that families often enlisted community members to help provide care. The claim also generalizes findings from families in Goa to families more broadly. (LLM, conf=0.85)

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Research works printed but not linked: 2

  1. Gupta A Singhal N Positive perceptions in parents of children with disabiilties Asia Pacific Disability Rehabilitation Journal 2004 15 22 35
  2. Vaidya S A sociological study of families with autism in Delhi: Issues and challenges Paper presented at The Asian Pacific Autism Conference 2009

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Authors
Divan, G., Vajaratkar, V., Desai, M. U., Strik‐Lievers, L., & Patel, V.
Affiliations
  • Sangath (IN)
  • Neuropsichiatria Infantile Ospedale San Paolo Università degli Studi di Milano Milano Italy
  • London School of Hygiene & Tropical Medicine (GB)
Corresponding author
Divan, Gauri
ORCID
Venue
Autism Research
Publisher
Wiley
Published
2012-03-30
Volume
5
Issue
3
Pages
190-200
ISSN
  • 1939-3792 (ISSN-L)
  • 1939-3806
DOI
10.1002/aur.1225
PMC
PMC4991760
OpenAlex
W1484239003
Semantic Scholar
958c6881b9c2577bf80cfaf5571ddce9157b6dd1
Cited by
210
References
40
Citations by year
2026: 18 · 2025: 23 · 2024: 15 · 2023: 16 · 2022: 11 · 2021: 30 · 2020: 17 · 2019: 19 · 2018: 12 · 2017: 12 · 2016: 8 · 2015: 17 · 2014: 9 · 2013: 1 · 2012: 2
FWCI
10.50
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Autism Research (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • Autism Speaks (AS5621)
  • Wellcome Trust (091834)
Topics
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
Keywords
autism spectrum disorder, families of autistic children, parental experiences, coping strategies, unmet needs, social withdrawal, social reintegration, discrimination, social support networks, economic burden, emotional burden, multidisciplinary services, special education, Goa
MeSH terms
Adaptation, Psychological, Adolescent, Child, Child Development Disorders, Pervasive, Child, Preschool, Cross-Cultural Comparison, Developing Countries, Education, Special, Female, Forecasting, Health Services Accessibility, Health Services Needs and Demand, Humans, India, Interview, Psychological, Male, Patient Care Team, Prejudice, Social Isolation, Social Support, Parenting, Focus Groups, Cost of Illness, Evidence-Based Medicine, Young Adult

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