Two new reports out recently provide further evidence of the hurdles facing families with a child on the autism spectrum disorders (ASD).
Using data from the largest population-based survey to date of individuals and families living with autism, the Pennsylvania Bureau of Autism Services’ statewide Autism Needs Assessment identified several themes and challenges facing Pennsylvanians affected by autism, as well as potential ways to improve quality of life.
The survey was led by the Center for Mental Health Policy and Services Research in the Perelman School of Medicine at the University of Pennsylvania, along with the Center for Autism Research at The Children’s Hospital of Philadelphia.
The report raises broad and multi-dimensional issues, all highlighting a lack of available and appropriate resources and giving a stark look at the day-to-day challenges confronting families living with autism.
- It is difficult to get an autism diagnosis and follow-up care. About 10 percent of families travel more than 80 miles to see a qualified diagnostic professional. Once a diagnosis is received, families don’t receive enough direction for early interventions or support services.
- Caregivers of individuals with autism earn much less than similarly educated caregivers in Pennsylvania. More than a quarter (27 percent) of caregivers stopped working outside the house; 26 percent decreased work hours or changing work schedules.
- Services don’t match complex needs, as most people with ASD have another disorder complicating the amount and type of services they need. Behavior challenges prevented 1 in 5 individuals with autism from accessing primary care and dental care.
- Preventable crises – run-ins with police, hospitalizations, and placement in residential facilities – occur because of lack of appropriate interventions. One in 7 adults and 1 in 12 adolescents with autism reported unwanted police contact; almost 1 in 4 middle or high school students with autism received suspension or detention related to behavioral issues.
- 55 percent of adults with autism surveyed were unemployed and only 30 percent were enrolled in college or vocational school. More than 50 percent had an unmet need for transitional planning, career counseling, or vocational training, while close to 60 percent dealt without social skills training.
Study co-author Lindsay Lawer, MS, of Penn's Perelman School of Medicine, noted that there will be future reports aiming to address the needs of families with autism.
Financial Impact
Family income suffers significantly for families caring for individuals with autism, according to another study by the Penn team. The national study found that, on average, autism is associated with a large reduction of family income of 27 percent, or $17,640 less earnings than families with children without autism. It’s particularly deleterious to mothers; mothers of children with autism earned 39 percent less than mothers of healthy children.
David Mandell, ScD, Associate Professor of Psychiatry and Pediatrics at the Perelman School of Medicine’s Center for Mental Health Policy and Services Research and Associate Director of the Penn/CHOP Center for Autism Research, presented the study at the recent International Meeting for Autism Research. The study was led by Zuleyha Cidav, PhD, a postdoctoral fellow working with Dr. Mandell.
We’ll provide access to more research from the Penn Medicine Center for Mental Health Policy and Services Research as it becomes available. For more information, please contact autism@mail.med.upenn.edu.
Is your family struggling to navigate through the support network for families with autism? What has worked for your family?