Anderson is a research associate in the Life Course Outcomes Research Program.
Shea is an associate professor and director of the Policy and Analytics Center at the Autism Institute and interim leader of the Life Course Outcomes Research Program.
American families with children with autism spectrum disorder (ASD) face higher levels of poverty, material hardship and medical expenses compared to households of children with other special health care needs, according to a National Autism Indicators Report from the A.J. Drexel Autism Institute.
The report, released in May 2020, used data from the Census Bureau’s annual 2016–2017 National Survey of Children’s Health (NSCH) to examine financial hardship among families of children ages 3 to 17 with ASD.
Families living in poverty have fewer resources to spare and are especially vulnerable in the face of burdens like care-related expenses, reduced earnings from taking time off work to cope with caregiving, and disconnection from services and supports.
A subsequent National Autism Indicators Report released in November 2020 zeroed in on how health care costs drive hardship.
The report found that children with ASD experienced higher rates of every single health condition except for asthma, compared to other children with special health care needs.
Conditions included learning disability, behavior or conduct problems, attention deficit hyperactivity disorder, speech or language disorder and anxiety. Almost half (46 percent) of parents of children with ASD reported that their child’s insurance did not always cover the services they needed.
Similarly, in another set of data, adults with ASD had higher rates of many conditions than a random sample of other adults. They were two to three times as likely to have depression or anxiety, for instance, and were also far more likely to have hypertension, epilepsy, ADHD, bipolar disorder or schizophrenia.
“Many children and adults on the autism spectrum experience more frequent use of services and medications,” says Lindsay Shea, director of the Policy and Analytics Center at the Autism Institute and interim leader of the Life Course Outcomes Research Program, an associate professor and co-author of the report. “They may need more types of routine and specialty healthcare. And their overall health and mental health care tends to be more complex than people with other types of disabilities and special health care needs.”
“Our hope is that this report will raise awareness and spark discussion about the ways in which families are struggling and need our collective societal support,” says Kristy Anderson, a research associate in the Autism Institute’s Life Course Outcomes Program and co-author of the report.