Experiences of Care-Seeking Parents With Children With Autism Spectrum Disorder in India

Autism spectrum disorder (ASD) affects approximately 18 million individuals in India, yet the factors influencing parental care-seeking behavior were not well understood. Guided by the health belief model, the purpose of this basic qualitative study was to explore how parents’ perceived severity of a child’s symptoms, parental beliefs about the causes of autism, and perceived mental and physical health outcomes of caregiving influence parents’ intention to seek services for children aged 1–10 years diagnosed with ASD in India. Data were collected using semistructured interviews with 10 mothers of autistic children. Data were analyzed using Braun and Clarke’s six-step thematic analysis. Findings revealed that participants had high perceived severity of speech delay, aggression motivated early intervention, and cultural normalization of mild symptoms delayed care. Scientifically informed beliefs increased the urgency for therapy, whereas cultural beliefs, such as karma and divine will, acted as barriers. Caregiving strain often hindered service seeking, although coping strategies, such as spousal support and peer networks, facilitated engagement. This study may promote positive social change by reducing stigma, enhancing early screening, and empowering families, thereby improving outcomes for children and enhancing caregiver well-being in India.