Many young people with autism spectrum disorder (ASD) lack the health care services they need to transition from pediatric to adult health care, says a new study by the University of Missouri.
The research shows that less than a quarter of autistic youth receive health care transition (HCT) services compared with half of young people with other special care needs such as asthma or diabetes.
“The health care community is doing a great job getting young people with ASD into therapies,” said Nancy Cheak-Zamora, an assistant professor in the Department of Health Sciences in the MU School of Health Professions.
“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 recommends that medical practitioners develop HCT services to ensure that young people with ASD receive coordinated and consistent care, more independence, and quality of life.
When some young adults leave pediatric care, they may lack health care for several years. Cheak-Zamora says that this type of gap in service delivery is more harmful for young adults with ASD.
Nearly half of autistic youth have medical conditions in addition to the communication and behavioral problems associated with ASD such as sleep disturbances, gastrointestinal conditions, or seizures. These conditions increase the youths’ dependence on the health care system and their need for HCT services, Cheak-Zamora said.
Cheak-Zamora recommends several ways that health care providers can help youth with ASD to transition to adult services:
- medical practitioners can start discussing the transition to adult health care services with their autistic patients when the patients are about 12 years old
- Physicians can gradually increase their autistic patient’s responsibilities for their own health as they mature so that the youth can become independent at the age of 18
- At age 18, a meeting should be set up with the young person with ASD, their caregivers, their adult primary care physician, and pediatricians to discuss the needs of the autistic youth. This meeting can ease the anxiety the youth may feel while switching to another service provider with unfamiliar settings and routines
“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.” Health care providers are not always trained to implement HCT services and don’t receive sufficient financial reimbursement for these services, she added.
The study, “Disparities in Transition Planning for Youth with Autism Spectrum Disorder,” was announced on February 12, 2013 and was published in the journal “Pediatrics.”
