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.
Indian families of autistic kids routinely spend over 10 % of monthly income on care, and public insurance can soften the blow.
01Research in Context
What this study did
Atmaram and colleagues asked families at one Indian children’s hospital how much they pay for autism care.
Parents listed every rupee spent on doctors, therapy, and school supports.
The team then compared the totals to each family’s monthly income.
What they found
Seven out of ten families spent more than one-tenth of their monthly income on autism services.
The biggest costs were getting the diagnosis and starting early intervention.
How this fits with other research
Raz et al. (2013) in Israel and Roddy et al. (2019) in Ireland used the same survey method and also found heavy parent costs.
Ohan et al. (2015) extend the picture: in the U.S., families with private insurance paid five times more out-of-pocket than families on public Medicaid.
Goodwin et al. (2012) go further—states that put extra Medicaid dollars into disability services lowered family costs, showing public spending can protect household budgets.
Why it matters
You now have hard numbers to show funders why parents miss sessions or drop out of treatment.
Use the 10 % income figure when you write grants or ask local agencies to subsidize travel, materials, or parent training.
Push for public insurance expansions; the U.S. data say they work.
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02At a glance
03Original abstract
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 abstractPeople 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.
Autism : the international journal of research and practice, 2026 · doi:10.1177/13623613261421840