The main drivers of costs among children with autism spectrum
disorders (ASDs) were special education and lost productivity for
parents, researchers found. Among adults, the main drivers of costs
were residential care and their own lost productivity.
“I think they really are the most thorough and trustworthy estimates
that we have,” Tristram Smith said.
Smith, who was not involved with the new analysis, is an autism
specialist at the University of Rochester Medical Center in
Rochester, New York.
The researchers write in JAMA Pediatrics that previous cost
estimates typically looked at individual areas, such as healthcare.
The new study takes several other factors into account, including
productivity, societal costs and other indirect costs.
For the analysis, the authors searched the medical literature for
studies about costs associated with ASDs.
They compiled the data and found that the lifetime cost of
supporting a person with an ASD and intellectual disability -
formerly referred to as mental retardation - added up to $2.4
million in the U.S. and about $2.2 million in the UK.
For those without an intellectual disability, the lifetime cost was
about $1.4 million in both the U.S. and the UK.
“These costs are much higher than previously suggested,” the
researchers write. “Much of the high cost associated with ASDs is
due to the cost of special education in childhood and to costs
associated with residential accommodation, medical care, and
productivity losses in adulthood.”
“My hope is that this is the beginning of a conversation - not the
end,” David Mandell said. “And the things that will drive the
conversation are those specific cost drivers.”
Mandell is the study’s senior author and director of the Center for
Mental Health Policy and Services Research at the University of
Pennsylvania in Philadelphia.
“We can be more effective and more efficient about service
delivery,” he told Reuters Health. “This is the case where being
consistent with our values as a society and lowering costs work
completely hand in hand.”
While it’s hard to make comparisons, Smith said it appears that the
lifetime cost of supporting someone with an ASD is higher than the
cost of supporting people with intellectual disabilities.
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“I think we’ve had a sense that especially as the individual enters
adulthood, things like residential care are going to be the main
cost drivers,” he said. “I think in a general way we’ve suspected it
all along. We’ve been slow to respond to that so I think there has
been more focus on the transition between youth and adulthood.”
In an editorial accompanying the new study, Paul Shattuck and Anne
Roux of the A.J. Drexel Autism Institute at Drexel University in
Philadelphia write that the analysis is “remarkable” given the lack
of information on costs and outcomes among people with ASDs.
“For the person with autism, diagnosis is a doorway into a social
role as a potential lifelong service user,” they write. “For
families, an autism diagnosis can also mean a lifetime of absorbing
many of the financial and caregiving burdens associated with the
disorder, especially in adulthood when the availability of societal
Smith said the study points to areas that need additional research,
such as the average life expectancy of people with autism and
whether they’re at an increased risk of other conditions.
“I think it is a big step forward because they incorporate
everything we know - which isn’t a lot - but it’s a big step forward
over previous estimates,” he said.
JAMA Pediatrics, online June 9, 2014.
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