OBJECTIVE: To estimate the associations between autism spectrum disorder (ASD) diagnoses and service use, caregiver time, and cost outcomes.Disability Scoop adds:
METHODS: We used national data from the Medical Expenditure Panel Survey linked to the National Health Interview Survey and a study-specific survey to estimate the annual utilization and costs for health care, school, ASD-related therapy, family-coordinated services, as well as caregiver time in children aged 3 to 17 years, with and without parent-reported ASD. 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 non–ASD-related illnesses.
RESULTS: Children with parent-reported ASD had higher levels of health care office visits and prescription drug use compared with children without ASD (P< .05). A greater proportion of children in the ASD group used special educational services (76% vs 7% in the control group, P < .05). After adjusting for child demographic characteristics and non–ASD-associated illnesses, ASD was associated with $3020 (95% confidence interval [CI]: $1017–$4259) higher health care costs and $14 061 (95% CI: $4390–$24 302) higher aggregate non–health care costs, including $8610 (95% CI: $6595–$10 421) higher school costs. In adjusted analyses, parents who reported that their child had ASD did not have significantly higher out-of-pocket costs or spend more time on caregiving activities compared with control parents.
CONCLUSIONS: The economic burden associated with ASD is substantial and can be measured across multiple sectors of our society. Previous analyses that focused on health care underestimated this economic burden, particularly for school systems.
Nationally, with 673,000 kids estimated to be on the autism spectrum, the researchers said that the cost of caring for this group in 2011 likely totaled $11.5 billion in the U.S. alone.
A 2012 study found that autism costs total $137 billion annually, but indicated that adults account for the majority of spending since they require housing and are often unemployed or underemployed. The current study focused exclusively on children.
Despite the hefty price tag, parents of kids with autism did not report significantly higher out-of-pocket costs, the study found. Rather, the expense is largely borne by society through special education services and other offerings.Autism Speaks adds:
Unexpectedly, the Harvard study found no autism-related increase in out-of-pocket expenses or lost income to families. This contrasts with recent reports of unreimbursed therapy costs forcing families to sell their homes in states that have yet to pass autism insurance reform laws.
“Numerous studies have demonstrated financial burden on families,” Rosanoff notes. Onerecent study, for example, found that mothers of children with autism earn, on average, 56 percent less than mothers of children without health limitations.
“There’s no clear explanation for this discrepancy,” Rosanoff says. “But studies that use different datasets at different points in time aren’t directly comparable.” Another possible explanation is that hard-won advances in health-insurance coverage for autism are reducing the burden on some families. However the majority of American families remain without health coverage for autism therapies. (For more on Autism Speaks advocacy efforts, click here.)
Looking beyond childhood
While the Harvard study looked at children, the majority of autism’s lifetime costs appear to be associated with adulthood, Rosanoff adds. These costs - including housing, disability support and lost productivity - are set to skyrocket as increasing numbers of children with autism reach adulthood. For these reasons, Autism Speaks is funding a broad range of research and family service projects designed to promote greater independence, employment and quality of life for adults with autism. (Learn more about these projects here.)