This study shifts perspective in research on the costs of childhood ASD away from system-level health care costs toward family costs. This is the first study to examine, using a nationally representative data set, a wide range of parental labor market outcomes associated with childhood ASD and to quantify an associated dollar cost. It is essential to account for such indirect costs in ongoing policy discussions regarding the best ways to support families and finance care for children with ASD.
Parents of children with emotional and behavioral disorders lack appropriate community-based services and resources needed to support work and family obligations.18
Parents face difficulties balancing children’s care needs and the demands of work. Finding accessible, affordable, and quality child care is difficult for many families of children with disabilities.19
Therefore, many parents endure forced unemployment or reduce their work hours to care for their children, reducing their annual income.19
These effects are more pronounced for among families of children with autism. It is likely that because the systems that care for children with autism are so fragmented, many more challenges are raised for families in attending to the ongoing needs of their children. Parents are called on to serve as their child’s caregiver, case manager, and advocate and to navigate numerous bureaucracies to obtain essential services for their child.20,21
This study compared parental labor market outcomes of children with ASD with those of children with another limitation and children with no health limitation. We found that it is the mother whose labor market outcomes are substantially affected by having a child with autism. This is not surprising; the mother is generally the primary caregiver and decision maker as to where and when health care services will be obtained and usually also accompanies the child to care. Mothers of children with ASD are less likely to work, work fewer hours per week, and earn substantially less than mothers of children with no health limitation. We did not find significant differences in employment probability and hours of work between mothers of children with ASD and mothers of children with another health limitation. Maternal earnings of children with ASD, however, are significantly less than those of children with another health limitation. In our sample, mothers of children with ASD were significantly more educated and older (a proxy for more work experience) than the other 2 groups. Given the positive coefficients for education and age in our earnings regressions (not reported), our findings suggest that mothers of children with ASD, who potentially could earn more because of their higher educational level and age advantage, actually earn less as a result of the burden of caring for their children with ASD. Higher opportunity costs for these mothers are most likely to be underlying substantial differences in maternal earnings between mothers of children with ASD and mothers of the other 2 groups.
Our findings are consistent with previous studies that found that families of children with ASD were more likely to report that a family member reduced or stopped employment because of their child’s condition,14,15
and that mothers of children with ASD were less likely to be employed than other mothers.22
The major conclusion emerging from our analysis is that childhood autism has substantial economic impact on families. Given that these families face substantial health care expenses, the potential economic impact of having lower income in addition to these expenditures is substantial. Previous research suggests that, among families of children with ASD, likelihood of reporting financial problems was positively associated with having lower income.12
Compared with children with other special health care needs, children with ASD were more likely to live in families that report financial problems, need additional income for the child’s medical care, or have reduced or stopped work because of the child’s condition.14
Some limitations should be considered when interpreting these results. First, our analyses are based on cross-sectional data; they do not permit firm conclusions about causal relationships among variables. It could be that independent variables for children with ASD may differ from other children for reasons unrelated to the child’s condition that we cannot observe within the available data. We attempted to address this limitation by including a rich set of measures of child, household, and parental characteristics. Second, we were limited in our ability to account for local labor market conditions, which are likely to affect parental labor supply. We attempted to address this limitation by using region and metropolitan statistical area status of residence and year as controls for labor market conditions. A related concern is that we collapsed 7 years of data. Diagnostic practices and service availability for children with autism likely have changed over that period of time. The small sample of children with ASD within each year of data precludes examining only the most recent data or providing temporal trends.
Despite these limitations, our findings have important implications. The elevated cost of raising children with ASD means those families must have a stable, adequate income to provide the specialized care their children’s needs. Therefore, parental employment might be vitally important for these families’ financial well-being. This suggests the need for additional evaluation of available supports for families and specific barriers to optimizing family income. It is essential to design both universal health care and workplace policies that recognize the full impact of autism, as well as targeted policies and resources to alleviate costs for the families with greatest needs.
When evaluating new interventions and policies, it is important to include costs and benefits to all parties affected by an intervention, including the family.23,24
Accurately accounting for family effects in cost-effectiveness analyses can improve our understanding of the full costs and benefits of ASD-related interventions and guide policy makers in allocating resources for ASD treatment. Otherwise, undervaluing new financing policies are likely to create negative consequences for families.