“Estimating the direct health and broader societal costs of caring for autistic children and adolescents - Preliminary findings from a tertiary care centre in Urban India”

Autistic individuals across the spectrum have diverse rehabilitation and support needs. Systematic data on the cost of care for autism is unavailable in low- and middle-income countries (LMICs), yet such information is essential to understand the financial burden on families. The current study is a preliminary attempt aimed to estimate the cost incurred by families of autistic children and adolescents attending a tertiary care centre in urban India. The adapted Children and Adolescents Economic Resources Questionnaire (CAER-Q) was administered to 80 families seeking autism-specific services. Direct medical, non-medical costs, and indirect costs, including time and productivity costs, were estimated by parent self-report. The sample consisted predominantly of preschool and middle childhood aged children coming to a premier referral centre from various geographical locations in the country and with different profiles of support needs and interventions received.<br/>Preliminary findings showed that major expenses involved diagnostic and early intervention services, schooling, and center-based rehabilitation. Among direct non-medical costs, education and childcare were the highest. In the absence of universal health coverage, approximately 71.25% of families exceeded the threshold of spending &gt;10% of their monthly income on healthcare, amounting to catastrophic out-of-pocket expenditures. Our study contributes preliminary findings as a first step in the cost-of-care studies on autism in India. Future studies should include a larger sample size, robust methods of cost estimation, and a mixed-methods design to capture economic impact on families. <br/>