Autism spectrum disorders (ASD) are a costly, lifelong set of developmental disorders that affect ?1 in 110 children in the United States.1,2 The care of children with ASD is often demanding and expensive, imposing extensive costs on families and the education and health care systems.3–6 In the past decade, the number of children with ASD served in the United States has increased >1000%.1,2 This rising prevalence of ASD created a sense of urgency for rigorous estimates of costs of ASD, which are critical to appropriate service planning.7
Previous research on the costs of ASD has focused mostly on health care expenditures, typically reporting the amounts that providers are reimbursed for services.1,7–9 A more comprehensive view of costs, however, must go beyond the system-level costs to include the economic impact on the family of the child. The goal of this study is to examine 1 aspect of family economic costs: the burden that results from changes in parental employment associated with raising a child with ASD.
The time required for care of children with ASD combined with the limited availability and high cost of specialized child care may reduce parents’ ability to sustain paid employment, resulting in substantial productivity losses for the family.3–6 Alternatively, parents may increase their workforce participation to pay for additional educational and health resources, thereby incurring costs in the form of forgone home production or leisure time.10 It has been suggested that the largest component of lifetime costs of ASD is this type of indirect costs.3 It has been difficult to quantify these costs because of the challenges in collecting the fine-grained data needed for such studies.7
The literature on the family costs of caring for children with other disabilities suggests that family economic costs constitute between 5% and 12% of families’ incomes, with indirect costs such as reduced labor force participation, home production, and leisure time representing the majority of these costs.11 It is not clear whether these estimates are generalizable to families of children with ASD. The economic effects of caring for a child with ASD may be more severe than caring for children with most other disabilities for at least 3 reasons. First, private health care insurance companies frequently severely limit or do not cover autism-specific therapies.12 Second, children with ASD require intensive health care and education services, which are often provided by multiple providers and thus require more transportation time and general involvement and oversight from caregivers.3 Third, ASD is often characterized by behavioral challenges that can lead to greater parental labor market disruption.13 Time-intensive or unpredictable health conditions like ASD are more likely to negatively affect maternal work hours and participation.13