Autism spectrum disorder (ASD) is a neurodevelopmental condition that leads to significant social, communication, and behavioral challenges.
A new study from the University of Pennsylvania and the Children’s Hospital of Philadelphia finds that caring for an individual with an autism spectrum disorder and an intellectual disability can reach $2.4 million dollars in the U.s. and $2.2 million in the United Kingdom over the course of a lifetime.
The study is published online in JAMA Pediatrics.
ASD commonly co-occurs with intellectual disability, a cognitive impairment that begins in childhood and causes below-average intellectual function and a lack of skills necessary for daily living.
The disorder can be a major source of stress on the long-term health, and social and financial well-being of affected individuals, their families and society as a whole.
“We sought to look at the overall economic affect of ASDs, not just the cost of caring for this population, but also the costs of individual and parental productivity loss across both the U.S. and the U.K.,” said senior author David Mandell, Sc.D.
“We also separated out those with intellectual disabilities (ID), as the presence of ID may significantly influence costs.”
The team, which included investigators from Penn and the London School of Economics, analyzed existing literature in both countries, updating and supplementing as needed to estimate the cost of accommodation, medical and non-medical services, special education, employment support, and productivity loss.
Differences in how education, health care and other systems are organized and financed between the two countries made this somewhat of a challenge.
The number of people with ASD is estimated at 3,540,909 in the U.S. and 604,824 in the U.K.
Assuming 40 percent of those with ASD also have an ID, the aggregate national cost of supporting children with ASD was estimated at $61 billion per year in the U.S., and $4.5 billion per year in the U.K.
When the number of patients with ID was estimated to be 60 percent, costs climbed to $66 billion per year in the US and $5 billion per year in the U.K.
Assuming a 40 percent prevalence of ID, the aggregate costs for adults was $175 billion per year in the U.S. and $43 billion in the U.K.; these numbers grew to $196 billion and $46 billion, respectively, when the proportion of adults with ID was increased to 60 percent.
For ASD individuals without ID, the lifetime cost was estimated at $1.43 million in the U.S. and $1.36 million in the U.K.
The largest contributor to total costs in both countries across all age groups were direct nonmedical costs, such as special education in childhood and indirect costs, such as parental productivity losses in adulthood; most of these individuals may encounter difficulty working.
“These numbers provide important information that can help policy makers and advocacy organizations make decisions about how to allocate resources to best serve this population,” said Mandell.
“Of particular importance is that one of the largest costs was parents’ lost wages. This finding makes it imperative that we examine how high-quality intervention can reduce burden on families, allowing them to stay in the work force. It also suggests the need for policies that make the work place more friendly to families of children with disabilities.”