Experiences of caregivers of autistic children in urban South India: Navigating diagnosis, daily life, and coping

Pu, Michelle Fang-Ming and Balasubramaniam, Bhuvaneswari (2026) Experiences of caregivers of autistic children in urban South India: Navigating diagnosis, daily life, and coping. (Submitted)

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Abstract

Caregivers of autistic children in resource-limited countries such as India face multifaceted challenges. Research on culturally specific experiences of caregivers navigating their child's autism diagnosis is limited and hinders effective adaptation of evidence-based interventions. This study explored the experiences of caregivers of autistic children in Bengaluru, South India. In-depth, semi-structured interviews were conducted with twenty caregivers of autistic children and eight providers, including educators and early-intervention providers. Transcripts were analyzed using inductive thematic analysis. Five themes describe caregivers’ complex journeys of receiving, navigating, and coping with their child’s autism diagnosis. Parental and healthcare provider awareness regarding autism is limited, leading to widespread normalization of developmental delays. Second, caregivers experience a high burden of care and prominent stigma regarding autism, which affect their interpersonal, psychological, and financial well-being. Third, beliefs on the etiology of autism vary and inform how caregivers approach solutions and therapies. Finally, caregivers use various coping strategies to navigate stigma and accept their child’s diagnosis, which influences caregiver views on spirituality and advocacy. These findings highlight the need for culturally adapted interventions that support caregiver well-being and coping and empower caregivers as pivotal stakeholders in their child’s development.

Item Type:	Article
Authors:	Pu, Michelle Fang-Ming and Balasubramaniam, Bhuvaneswari
Document Language:	Language English
Uncontrolled Keywords:	Autism, caregiver, stigma, coping
Subjects:	Philosophy & psychology > Psycholgy Social sciences > Education > Schools & their activities; special education
Divisions:	Azim Premji University - Bengaluru
Full Text Status:	Public
URI:	http://publications.azimpremjiuniversity.edu.in/id/eprint/7898
Publisher URL:	https://doi.org/10.2139/ssrn.6025147

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