PHILADELPHIA — Autism spectrum disorders (ASD) are a lifelong set of developmental disorders that often demand significant resources of time and money from families. New research from the Perelman School of Medicine at the University of Pennsylvania and the Center for Autism Research at the Children's Hospital of Philadelphia (CHOP) now reveals that a wide range of negative parental employment and earnings outcomes are associated with childhood ASD, and specifically have a major impact on a mother's ability to contribute to the overall income of the family. The new research is published online-first in Pediatrics.
"Our results suggest a significant economic burden for families of children with ASD, especially for mothers," said Zuleyha Cidav, PhD, a postdoctoral fellow at the Center for Mental Health Policy & Services Research at Penn and lead author of the study. "Mothers are often the primary caregiver and decision maker, and therefore have to devote considerable personal resources to obtaining health care services for their children; it is not surprising that, because of these additional responsibilities, these women are less likely to work, work fewer hours per week, and earn substantially less than mothers of children with no health limitation."
In the study, researchers tracked employment outcomes of parents of children with ASD in order to estimate the average annual loss of parental earnings associated with raising a child with autism in the United States. They broke their sample into three groups: families with children with diagnosed ASD; families with children who did not have diagnosed ASD, but had another health limitation; and families with children with no reported ASD or other health limitations.
On average, mothers of children with ASD earned 35 percent less than the mothers of children with another health limitation, and 56 percent less than mothers of children with no health limitation. They are 6 percent less likely to be employed, and work an average of 7 hours less per week than mothers of children with no health limitation. Fathers' employment was not impacted. On average, family earnings of children with ASD are 21 percent less than those of children with another health limitation and 28 percent less than those of children with no health limitation.
The authors noted that in the sample, mothers of children with ASD were significantly more educated and older (a proxy for more work experience) than the other two groups. Given the positive coefficients for education and age, the 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.
"This study shifts perspective in research on the costs of childhood ASD away from system-level health care costs toward family costs," said David Mandell, ScD, senior study author and associate director of both the Center for Mental Health Policy & Services at Penn and the Center for Autism Research at CHOP. "Parents of children with ASD lack appropriate community-based services and resources needed to support work and family obligations. In ongoing policy discussions regarding the best ways to support families and finance care for children with ASD, it is essential to design universal health care and workplace policies that recognize the full impact of autism on families."
For more information on the study, please see the release from the journal Pediatrics.
Penn Medicine is one of the world’s leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation’s first medical school) and the University of Pennsylvania Health System, which together form a $8.9 billion enterprise.
The Perelman School of Medicine has been ranked among the top medical schools in the United States for more than 20 years, according to U.S. News & World Report's survey of research-oriented medical schools. The School is consistently among the nation's top recipients of funding from the National Institutes of Health, with $496 million awarded in the 2020 fiscal year.
The University of Pennsylvania Health System’s patient care facilities include: the Hospital of the University of Pennsylvania and Penn Presbyterian Medical Center—which are recognized as one of the nation’s top “Honor Roll” hospitals by U.S. News & World Report—Chester County Hospital; Lancaster General Health; Penn Medicine Princeton Health; and Pennsylvania Hospital, the nation’s first hospital, founded in 1751. Additional facilities and enterprises include Good Shepherd Penn Partners, Penn Medicine at Home, Lancaster Behavioral Health Hospital, and Princeton House Behavioral Health, among others.
Penn Medicine is powered by a talented and dedicated workforce of more than 44,000 people. The organization also has alliances with top community health systems across both Southeastern Pennsylvania and Southern New Jersey, creating more options for patients no matter where they live.
Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2020, Penn Medicine provided more than $563 million to benefit our community.