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, 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 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. Preliminary findings showed that major expenses involved diagnostic and early intervention services, schooling and centre-based rehabilitation. Among direct non-medical costs, education and childcare costs were the highest. In the absence of universal health coverage, approximately 71.25% of families exceeded the threshold of spending >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. Lay abstract People with autism have different needs when it comes to support and treatment. In many countries without universal health coverage, getting proper care can be expensive and difficult for families to afford. There isn’t much information about how much autism care costs in low- and middle-income countries. This study looked at how much families spend on caring for their autistic children in the Indian context. The adapted Children and Adolescents Economic Resources Questionnaire was administered to 80 families of children with autism seeking services at a tertiary care centre. Results showed that families spent the most on diagnosis, early intervention, education and childcare. A significant proportion of families incurred catastrophic out-of-pocket expenditures on a regular basis. The preliminary findings highlight the financial impact on families.