How to help teens with autism shift to adult care

U. MISSOURI (US) — Less than one in four young people with autism spectrum disorder receive transition services designed to prevent gaps in health care and insurance coverage.

The study published in the journal Pediatrics recommends that the medical community develop these services to ensure consistent and coordinated care and increase independence and quality of life. About 50 percent of youth with other special health care needs, like asthma or diabetes, receive such services.

Occasionally, young adults lack health services for several years after they leave the care of their pediatricians, but the gap in care is more harmful for young adults with autism spectrum disorder (ASD), says Nancy Cheak-Zamora, assistant professor in the Department of Health Sciences at the University of Missouri.


In addition to their behavioral and communication difficulties, nearly half of youths with ASD have major co-existing medical conditions, such as seizures, gastrointestinal problems, or sleep disturbances. These conditions increase their dependence on the health care system and their need for health care transition (HCT) services.

“The health care community is doing a great job getting young people with ASD into therapies,” she says. “However, once the youths age into adulthood, we stop thinking about how to help them address their medical needs and the new challenges they’re facing. Similar to educational, vocational, or social transitioning, HCT services are necessary to help individuals with ASD function independently.”

Health care providers should discuss the transition to adult health care services when their patients with ASD are about 12 years old. As the youths mature, doctors can gradually give them more responsibilities for their health care so they can develop independence by the time they turn 18.

At that point, youths, their caregivers, and their pediatricians, and adult primary care physicians meet to discuss the youths’ heath needs. This meeting can help reduce the risk of anxiety youths with ASD experience when faced with unfamiliar routines and settings that could come with switching to a new provider.

Health care providers are not always trained to implement HCT services and don’t receive sufficient financial reimbursement for the services, which can take time away from appointments that the physicians now use to address patients’ immediate health needs, Cheak-Zamora says.

“Most people with ASD are younger than age 18 right now, so in the next decade we’re going to get an influx of adults with ASD. Our health care system is currently unprepared to treat their needs.”

Source: University of Missouri