Families caring for someone with autism could spend up to $2.4 million to support their loved one’s diagnosis over his or her lifetime, according to study published Monday in JAMA Pediatrics.
Autism spectrum disorder is a neurodevelopmental disorder characterized by impaired social ability and limited repetitive behaviors. More than 3 million people living in the U.S. have the disorder, according to the study. Individuals with the disorder are require specialized schooling and other services that are not covered by insurance, which contribute to the increased costs. The annual cost of autism therapies and treatments can exceed $40,000 to $60,000 per year, according to the Autism Action Partnership.
The study, conducted by British researchers and researchers at the University of Pennsylvania, looked at data on the prevalence of autism among individuals in the US and the UK. They also looked at estimated out-of-pocket payments made by their families for both medical and non-medical services to accommodate their child.
According to the study, the lifetime cost to support a person with autism and with an intellectual disability in the US is $2.4 million and $2.2 million the UK, which is a small comparison given the difference in health systems between the two countries. The lifetime cost to support an individual with autism but without an intellectual disability in the US is $1.4 million, the study found.
While the study looked at individuals with autism in all age groups, the findings suggest that the financial cost of raising a child with autism in the U.S. may be more than double that of raising a child without the disorder. Middle-income families are likely to spend an estimated $241,080 to raise a child born in 2012, according to the US Department of Agriculture.
In the US, the priciest part of raising a child with autism was the cost of special education, as well as lost work time by parents to accomodate their child’s needs, the study found. Caregivers of adults on the spectrum have to worry about the costs associated with residential care and medical care.
However, studies suggest that services offered for children with autism — especially special education — does not lead to better outcomes as adults, Paul Shattuck and Anne Roux, both of the Drexel Autism Institute wrote in an editorial accompanying the study.
“Several factors make it difficult to reconcile the vast and increasing sums of money spent on autism-related services against a long history of poor-quality outcomes at the population level,’’ Shattuck and Roux wrote.
“We currently have few ways of knowing whether the increasing stockpile of evidence-based practices for children is actually moving the needle in producing population-level benefits later in the life course,’’ they wrote.
According to Shattuck and Roux, the focus should be on investing in programs for individuals with autism to improve their quality of life, and ultimately monitoring the financial costs as well as the benefits to individuals with autism as they get older.