Direct and indirect costs for families of children with autism spectrum disorder in China

Abstract

Autism spectrum disorder has gained international attention due to its prevalence and the extent to which it can affect families. As a disorder without quantifiable treatment effects, it is easily overlooked in the battle for resources. Estimating family economic burdens and the specific factors that may be associated with them could help in the identification of resources and the promotion of social justice. We examined the family costs from a national family survey with Children with autism spectrum disorder aged 2–6 years (N = 3236). A three-tiered model to quantify the costs was used. The families’ average annual direct cost per child was $24,869.0, including direct medical cost (inpatient, outpatient,drugs, etc.) of $6009.2 and direct nonmedical cost (rehabilitation or educational, rental, transportation, care, and others) of $18,859.8. The annual indirect costs (productivity loss from resignation and job adjustment) for families were $13,990.7. The total costs were $34,206.5. The results of the regression revealed that the mothers’ educational level was significantly associated with costs. Families with an interprovincial immigration background, a higher-than-average income, or children with more severe autism spectrum disorder had a greater possibility of higher direct, indirect, and overall costs. Autism spectrum disorder imposed a significant financial burden on the families of children with autism spectrum disorder.

Lay abstract

This is the first comprehensive national study to explore the direct and indirect costs for families of children with autism spectrum disorder in China. The increasing prevalence of autism spectrum disorder highlights a growing need for resources to provide care for families of children with autism spectrum disorder. The medical and nonmedical costs and parents’ productivity loss have caused a serious burden on their families. Our objective is to estimate the direct and indirect costs for the families of children with autism spectrum disorder in China. The target population was parents of children with autism spectrum disorder. We analyzed the costs using cross-sectional data from a Chinese national family survey with children aged 2–6 years (N = 3236) who were clinically diagnosed with autism spectrum disorder. Family data from 30 provinces in China were obtained. Cost items included direct medical costs, direct nonmedical costs, and indirect costs. In this study, we found that the largest part of family costs for autism spectrum disorder are nonmedical costs and productivity loss. Autism spectrum disorder has imposed a huge economic burden on parents having children with autism spectrum disorder in China, who need more support than the current health care system provides.