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Economic cost of autism disorders is considerable

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Costs identified – now what about outcomes?

Ariane V.S. Buescher and associates have broken new ground by estimating the costs of care for children and adults with autism spectrum disorder, according to Paul T. Shattuck, Ph.D., and Anne M. Roux. Now that we have an idea of the costs, there is a need to focus on the outcomes of this care, they wrote.

It is difficult to reconcile these "vast and increasing" expenditures for autism-related services "against a long history of poor-quality outcomes at the population level." Autism interventions and their outcomes "are generally not reported in ways that allow for a useful population-level or disability-specific picture of who gets what services, at what cost, and with what benefit," they noted.

"We need a Framingham Study for autism spectrum disorders, especially to track risks and outcomes into middle and later adulthood," Dr. Shattuck and Ms. Roux said.

Paul T. Shattuck, Ph.D., and Anne M. Roux are at A. J. Drexel Autism Institute, Philadelphia. They reported no financial conflicts of interest. These remarks were taken from their Invited Commentary accompanying Ms. Buescher’s report (JAMA Pediatrics 2014 June 9 [doi:10.1001/jamapedatrics.2014.585]).


 

FROM JAMA PEDIATRICS

The economic cost of autism spectrum disorders was found to be considerable in a study assessing the housing, medical and nonmedical health services, and educational expenses associated with the disorder in the United States and the United Kingdom, according to researchers.

The report was published online June 9 in JAMA Pediatrics.

Ariane V.S. Buescher of the London School of Economics and Political Science and her associates reviewed what they called "robust evidence from well-conducted studies" in the literature and from administrative sources such as the Centers for Disease Control and Prevention to calculate the costs of autism spectrum disorders to families and to society according to patient age (preschool, school-age, secondary-school-age, and adult) and functional status (the presence or absence of intellectual disability). They calculated inpatient, outpatient, emergency, physician, other health professional, pharmacy, and out-of-pocket health care costs, as well as the costs of special education, child care, special programs, after-school care, day care, summer school, weekend programs, respite care, and transportation to all of the above.

The precise prevalence of concomitant intellectual disability is not known, but it is estimated to be 40%-60% in both places. In a statistical model assuming a prevalence of 40%, the national cost of supporting autistic children was found to be $61 billion per year in the United States and 3.1 billion pounds per year in the United Kingdom, while the national cost of supporting autistic adults was found to be $175 billion per year in the United States and 29 billion pounds per year in the United Kingdom. In a model assuming a prevalence of concomitant intellectual disability of 60%, these costs were found to be $66 billion, 3.4 billion pounds, $196 billion, and 29 billion pounds, respectively.

Among autistic children, the highest costs were attributed to special education and to the lost productivity of their parents. Among autistic adults, the highest costs were attributed to special housing; direct medical costs, which were much higher than those for autistic children; and to lost productivity of the impaired individual himself or herself.

In the United States and the United Kingdom, the discovery of these substantial and wide-ranging economic effects "should energize a search for actions that make better use of available resources," Ms. Buescher and her associates noted (JAMA Pediatr. 2014 June 9 [doi:10.1001/jamapediatrics.2014.210]).

Specifically, the unexpectedly high cost to families from employment disruption should be addressed, perhaps through workplace policies specific to parents of autistic children. And the excessive cost of residential housing for autistic adults should be reconsidered; perhaps more cost-effective community-living programs should be explored, the investigators said.

Ms. Buescher and her associates noted that the cost estimates in the study came from a range of sources. Because some costs were not available in the literature, those numbers were based on "expert judgment," they wrote. "Nevertheless, by highlighting the scale of economic effect, the relative scale of different cost contributors, and patterns throughout life, such studies can stimulate and support policy and practice discussion."

This study was funded by Autism Speaks. Ms. Buescher and her associates reported no financial conflicts of interest.

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