Autism Support Costs Millions in a Lifetime, Yet Experience-Based Improvements Are Lacking

Over the span of a lifetime, the cost of supporting a person with autism spectrum disorder (ASD) in the United States is estimated to be between $1.4 million and $2.4 million, according to a study published in the Journal of the American Medical Association (JAMA) Pediatrics, with the total varying depending on whether the individual has an intellectual disability. The totals included both direct costs, such as medical bills, and indirect costs, such as loss of productivity.

“A defining feature of the lives of many people on the autism spectrum,” wrote the researchers in an editorial, “is a lifetime of engagement with service systems providing health and therapeutic interventions, education and training, and other societal supports. Therefore, getting an autism spectrum disorder diagnosis is not just a medical experience or a service encounter. For the person with autism, diagnosis is a doorway into a social role as a potential lifelong service user.”

According to the study, the largest costs for children with ASD were special education services, as well as productivity lost by the children’s parents in having to provide extra care for the child. In adulthood, the researchers found that residential care and supportive living accommodation, as well as the individual’s own loss of productivity, were the largest costs. Medical expenses were higher for adults with ASD than for children.

Despite the high costs of supporting children with autism (with $11 billion spent each year on special education for school-age children)—and despite the Individuals with Disabilities Education Act Part B Indicators initiative, which mandates states’ measuring and reporting of the provision of such services—the researchers found that outcomes are not tracked and reported in ways that provide a useful picture of who gets the services, the cost of services, and what benefits arise. The researchers wrote, “There is not so much a lack of effort as there is a lack of learning from effort already expended.”

The study concluded that because of the substantial direct and indirect economic impact of ASD, there is a need to improve the search for effective interventions in a landscape of scarce societal resources. According to the researchers, “We need a revolution in measuring access, quality, investments, and outcomes at community and population levels.”