THE ECONOMIC BURDEN OF CHILDHOOD AUTISM SPECTRUM DISORDERS

Purpose: To derive annual incremental costs associated with caring for a child with autism spectrum disorder (ASD) from a societal perspective.

Methods: We performed a cross-sectional analysis that utilized national data from three sources: the household component of the Medical Expenditure Panel Survey, the child sample survey in the National Health Interview Survey, and a primary survey administered by our institution.  These data sets provided us with utilization and cost data on formal medical care (including hospital services, physician and non-physician office visits, and prescription medicines), formal non-medical care (including education services, childcare, and legal services), and informal caregiving time.  Regression analyses estimated the association between ASD diagnosis and cost, controlling for child gender, age, race/ethnicity, insurance status, household income, country region and urban/rural classification, and other non-ASD related illnesses.  Secondary analyses estimated the association between parent-reported ASD symptom severity and the costs of formal non-medical care and caregiving time.

Results: After adjusting for child demographic characteristics and non-ASD associated illnesses, the total annual incremental costs associated with caring for a child with ASD were estimated to be $17,018.  Having ASD was significantly associated with $2,957 (95% CI: $1,114-$4,199) and $9,006 (95% CI: $ 6,932-$11,314) higher formal medical and non-medical care costs, respectively.  Informal caregiving time costs alone were not significantly higher in the ASD group overall, but caring for a child with the most severe form of ASD was significantly associated with $21,313 (95% CI: $6,556-$39,473) higher time costs.  When these estimates were applied to the estimated 535,000 children aged 3-17 in the U.S. with ASD, we estimated that the total societal costs of caring for this group of children were $9.1 billion in 2011. These costs include $6.4 billion in formal care costs, and $2.7 billion in informal caregiving time costs.

Conclusions: Caring for a child with ASD is associated with a large economic burden, both in terms of formal care as well informal care costs.