The lifetime cost of supporting an individual with autism spectrum disorder (ASD) and intellectual disability ranges from $1.4 million to $2.4 million in the U.S. and the United Kingdom, according to a new study published online in JAMA Pediatrics.

The results of this study “represent the most comprehensive estimates to date of the financial costs of ASDs in the United States and the United Kingdom” and are much higher than previously suggested, the study authors wrote.

ASD is a neurodevelopmental disorder that can cause impaired social and communication abilities, as well as repetitive patterns of behavior, interests, or activities. According to the Autism Society, ASD is the fastest-growing developmental disability, affecting an estimated one in 68 births in the U.S.

Unfortunately, the functional impairment caused by ASD often results in high financial costs for families who must seek special therapies to help support their child or loved one, the researchers said.

“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, ScD, in an interview with Healthline. “We wanted to make sure that policy makers, administrators, and advocates had the best possible information.”

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Putting a Price Tag on ASD

The researchers reviewed a variety of studies of families coping with autism in the U.S. and U.K. 

"Availability of relevant data differs across countries, particularly because of differences in how education, healthcare, 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.”

The scientists determined that much of the costs associated with autism go toward childhood special education, specialized medical care, and loss of productivity for adult family members.

“One of the largest costs in childhood was lost parental earnings. We think this happens because parents have to drop out of the workforce to care for their children,” Mandell said. “They give up their jobs because of the struggle of advocating for and managing their child's care becomes a full-time job. If we had more comprehensive, family friendly care in place, families wouldn't be faced with this drop in income right when they're incurring many more expenses.”

Another hurdle is the high cost of residential care for adults with autism, Mandell said.

"Many adults may need this type of care, but in other cases, residential care represents a failure of our society to have viable, community-based options available for adults with autism,” he said. “These adults therefore end up living in very expensive, segregated settings away from friends and family.”

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A Family Struggle

Melanie and Seth Fowler, who launched the Fowler 4 Group as a way to educate and empower parents of children diagnosed with ASD, have had first-hand experience with the financial cost of supporting their son William, now eight. He was diagnosed with Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) at age two.

For them, financial costs began when William was 16 months old with an early intervention program. After their son was diagnosed, other costs included Applied Behavior Analysis (ABA) therapy—ranging from $90 to $150 per hour—and speech therapy, which can cost as much as $125 for a 30-minute session, Melanie Fowler said.

“We filed for coverage for ABA therapy and our insurance denied it several times—which is what most families deal with when filing for ABA therapy,” she said. “Our policy said that they would cover it, which is why we bought our insurance and then when they found out what the costs were they didn’t want to cover it because it was very expensive.”

Eventually, Fowler said they had to hire a lawyer to get the coverage they needed.

“Our [insurance company] was clearly lying to us, and meanwhile our son was growing and he needed the therapy and we needed it covered,” she said. Fowler said she estimates that it can cost more than $1,800 per week if William attends one-on-one therapy sessions seven hours per day.

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Deborah Simmons and her husband, Tom, can relate to the lack of insurance coverage and high out-of-pocket costs associated with raising a child with an intellectual disability. Their daughter Jenny, who was born prematurely and diagnosed with Asperger syndrome, continues to live at home with them at the age of 25.

“We started paying out-of-pocket for occupational therapy because our insurance didn’t cover it,” Deborah Simmons said. They also paid for private school from seventh grade through high school, as well as five and a half years of college, so that their daughter could get an associate degree, she said.

“The public schools don’t know how to deal with kids [in Jenny’s situation],” they said. “We’re were really very poorly served, so we took her out of a public school and put her into a private school where she could get a better education.”

Other costs included private tutoring, physical therapy, participation in social skills groups, and medical bills, Deborah Simmons said.

“What’s the alternative?" she said. "We were spending whatever we could spend to try and get her the help she needed. Fortunately, we were able to do that. But not everyone can.”

While Jenny is now able to work full-time with benefits, the Simmons said that they still help out with a few expenses, such as buying food.

“We’re not sure whether she’ll be able to move out at all,” Deborah Simmons said.  “We’re always keeping on an eye on her, making sure she is okay and gets what she needs.”

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Taking Steps Toward the Future

“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."

Mandell said he thinks every intervention study for ASD should be conducted with cost in mind.

“We should append a cost effectiveness component to all of them, and think about how it will be feasible to implement interventions in the community,” he said.

“Researchers and intervention developers need to come down from the ivory tower and work with community agencies to learn what will work in real-life practice and what the associated cost savings are,” he added. “We need to be armed with these data to approach insurance companies and government agencies with concrete plans for improving autism services.”