Lifetime support in the U.S. and United Kingdom for those suffering from autism spectrum disorder and intellectual disability ranges from $1.4 million to $2.4 million, states a study published in JAMA Pediatrics.
According to the Autism Society, ASD is the fastest growing disability with one in 68 children diagnosed as having the disorder in the U.S. Support costs includes therapy, educational services and community programs for families and ASD individuals.
"Cost is such an important driver of what services are available to families and has so many implications for policy and system planning," said study author David Mandell, a University of Pennsylvania professor who also is associate director of the Center for Autism Research at The Children's Hospital of Philadelphia. "We wanted to make sure that policy makers, administrators, and advocates had the best possible information."
The study assessed a variety of research on families dealing with autism.
"Availability of relevant data differs across countries, particularly because of differences in how education, health care, and other systems are organized and financed," the study authors wrote. "In the absence of nationally representative samples with complete cost-related data for individuals with ASDs and their families in either country, we used a bottom-up approach, drawing on previous studies, updating and supplementing them as needed."
Much of the cost spent is supplanting family income, as oftentimes one parent needs to not work to take care of an ASD child. The highest costs were for childhood special education, specialized medical care, and loss of productivity for adult family members.
"We think this happens because parents have to drop out of the workforce to care for their children," Mandell said.
Later in life the costs are for providing residential care for ADS adults, which is currently very expensive and often not near family homes, say researchers.
"The substantial direct and indirect economic effect of ASDs emphasizes the need to continue to search for effective interventions that make best use of scarce societal resources," the study authors concluded. "The enormous effect on families also warrants policy attention."
Austism spectrum disorder (ASD) is a neurodevelopmental disorder marked by impaired social ability, communication, and repetitive patterns of behavior, interests or activities.
The research report parses out the specific costs for the U.S. and UK. The lifetime cost of supporting a patient was $2.4 million in the U.S. and $2.2 million in the UK. The lifetime cost to support a patient with an ASD but without an intellectual disability was $1.4 million in the U.S. and the same in the UK.
"These costs are much higher than previously suggested. There is also an urgent need for a better understanding of the effectiveness and cost-effectiveness of interventions and support arrangements that address the needs and respond to the preferences of individuals with ASD and their families," states the study, which was supported by Autism Speaks.
