From Autism Speaks
via the HuffPost Parents Blog
By Catherine Pearson
June 9, 2014
A new study has found that the cost of supporting a person with an autism spectrum disorder throughout his or her lifetime can soar as high as $2.4 million.
The study, published in JAMA Pediatrics on Monday and funded by the nonprofit Autism Speaks, suggests that autism's financial toll on individuals, families and society as a whole is "much higher than previously suggested," its authors write, and includes direct medical, educational and residential costs, as well as indirect costs such as lost wages.
"We took all of the data we could find that had been published on costs and synthesized it to come up with an estimate," researcher David Mandell, director of the Center for Mental Health Policy and Services Research at the University of PA, told The Huffington Post.
"The lifetime cost of individuals with ASD and no intellectual disabilities was $1.4 million -- and that's in addition to the costs that would accrue with a typically-developing child," Mandell said. "It's $2.4 million for individuals with intellectual disabilities."
(According to estimates cited in the report, between 40 and 60 percent of people with autism spectrum disorders also have an intellectual disability, characterized by limitations in intellectual function and adaptive behaviors, including social and practical skills.)
On average, the cost for children with autism and an intellectual disability in the U.S. was more than $107,800 per year up to age 5, and roughly $85,600 per year between ages 6 and 17. Among children with no diagnosed intellectual disabilities, the associated costs were lower: approximately $63,290 per year for those 5 and under, and $52,205 per year for those between 6 and 17.
The top average annual cost was special education, followed by parents' productivity losses and medical expenses, including inpatient, outpatient, emergency, home health care, pharmacy and out-of-pocket costs.
"I was surprised that the second-highest cost in childhood was lost wages for parents leaving work to care for children with autism," said Mandell. "Normally, when we look at expenses, we're looking at system-level expenses, education costs ... We're so rarely looking at more indirect costs."
Among adults with autism in the U.S., the top average annual cost was for accommodations (many adults with autism benefit from living in some form of supported housing), followed by medical expenses and lost productivity. Average costs for adults with intellectual disabilities were more than $88,000 per year. For those without such disabilities, average costs were roughly $50,300 per year.
The study also reviewed the costs of autism spectrum disorders in the United Kingdom, and found that the total costs of supporting an individual with autism were fairly similar to those seen in the U.S. -- something that Mandell found surprising. He and his co-authors wrote that they found the similarity "remarkable," given the two nations' very different approaches to health care, education and residential accommodations.
"I think what this means is that the different places have come to different conclusions about how to care for individuals with ASD, but [you're] paying in one system or another," Mandell said. "It speaks to the need to [ask], 'If you improve care in one place, are you also realizing better outcomes and cost savings in other systems as well?'"
In an editorial accompanying the study, Paul Shattuck and Anne Roux, researchers with Drexel University's Autism Institute, praised the team for breaking new ground and highlighting the fact that for many families, an autism diagnosis means "a lifetime of absorbing many of the financial and caregiving burdens associated with the disorder, especially in adulthood when the availability of societal supports diminishes."
Mandell said he hopes the $1.4 to $2.4 million figure revealed in the study "won't be overwhelming" to parents of children with autism.
"I do think it suggests important places for parents to begin to advocate, and they're not the places we've necessarily traditionally thought of," he said. "I think, for example, it will be really important to advocate for workplace policies that are more supportive of families with children with disabilities."