Putting a Dollar Amount to Autism Pays Off

Autism spectrum disorders (ASDs) have an enormous price tag, and experts at The Children’s Hospital of Philadelphia are hoping that all those dollar signs add up to increased attention on new research and more coordinated ways to support patients with autism throughout adulthood.

One in 68 children in the United States has ASD, making it the fastest-growing disability. It is a complex neurological and developmental condition characterized by marked deficiencies in social interaction and communication and various behavioral issues. While individual presentations may vary, the signs of ASD usually appear during the first three years of life.

David S. Mandell, ScD, associate director of the Center for Autism Research at CHOP, and co-investigators in London updated estimates of the economic effects of ASDs on individuals and their families in the U.S. and U.K. They published their results online recently in JAMA Pediatrics. The lifetime cost of supporting a patient with an ASD and intellectual disability was $2.2 million in the U.S., and the lifetime cost for a patient with an ASD without an intellectual disability was $1.4 million in the U.S.

“They are staggering numbers in many ways,” said Dr. Mandell, who is also an associate professor of psychiatry and pediatrics at the University of Pennsylvania’s Perelman School of Medicine, where he directs the Center for Mental Health Policy and Services Research. “What is most intriguing about the study is what is driving those costs.”

For families, when their child with autism is young, special education costs were the largest cost component. Lost parental wages — especially for mothers who often must leave the workplace in order to care for their children — was another hefty economic hit. Productivity loss was estimated to be $18,720 annually for U.S. caregivers of children with ASD.

A key finding, Dr. Mandell pointed out, is that most of the expenses associated with autism accrue in adulthood. Society tends to think of autism as a pediatric concern, but it is a lifelong disorder. Residential care represents a substantial portion of those annual costs in the U.S.: $36,000 for adults with an ASD who have an intellectual disability, and about half that amount for adults with an ASD without an intellectual disability.

While some adults with autism have significant impairments and require expensive 24-hour residential care in a stable, supervised environment, many others who have participated in early interventions continue to develop their skills when given social coaching and job training so that they can work and live in less restrictive housing arrangements.

“I hope that advocates will use this information to support the importance of paying for intensive, evidence-based care for children with autism that has the goal of increasing their potential for full participation in their communities, which also may come with cost-savings,” Dr. Mandell said.

Part of the challenge to conducting this study, Dr. Mandell said, is that no gigantic spreadsheet listing all of these costs in one place exists. In addition to performing an extensive literature review conducted in 2013 concentrating on U.S. and U.K studies, Dr. Mandell and his co-authors relied on a number of sources to estimate cost-related data. For future studies, he encourages multiple systems to collaborate and perform longitudinal, population-based data collection so that researchers have easier access to metrics that can be used to assess the efficiency and effectiveness of autism care on a more regular basis.

Autism Speaks, the world’s leading autism science and advocacy organization, supported this study.