Public Release:  Youths with autism spectrum disorder need help transitioning to adult health care

Less than 1 in 4 young people with ASD receive transition services

University of Missouri-Columbia

COLUMBIA, Mo. - Health care transition (HCT) services help young people with special health care needs such as asthma or diabetes move from pediatric to adult health care. However, youths with autism spectrum disorder (ASD) have less access to these services, which are designed to prevent gaps in care and insurance coverage. A University of Missouri researcher recommends that the medical community develop HCT services for individuals with ASD as a way to ensure consistent and coordinated care and increase their independence and quality of life.

Nancy Cheak-Zamora, an assistant professor in the Department of Health Sciences in the MU School of Health Professions, found that less than a quarter of youths with ASD receive HCT services compared to about half of youths with other special health care needs. 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 ASD. 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 the youths' dependence on the health care system and their need for HCT services, Cheak-Zamora said.

"The health care community is doing a great job getting young people with ASD into therapies," Cheak-Zamora said. "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."

Cheak-Zamora said 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, the physicians can gradually give them more responsibilities for their health care so they can develop independence by the time they turn 18. At that point, Cheak-Zamora recommends that the 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, she said.

"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," Cheak-Zamora said. "Our health care system is currently unprepared to treat their needs."

Cheak-Zamora, who also teaches in the MU Master of Public Health Program, said 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.

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The study, "Disparities in Transition Planning for Youth with Autism Spectrum Disorder," was published in the journal Pediatrics.

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