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Teens with Autism Lack Healthcare Transition Services

February 19, 2013

Study finds young people with autism half as likely to receive healthcare transition support as those with other longterm medical needs


When a teenager with special medical needs is ready to move from pediatric care to adult care, healthcare transition services can help them make the switch. These programs are designed to prevent gaps in both care and insurance coverage.

But according to a new study in this week’s Pediatrics, teens with autism receive transition services half as often as those with other special healthcare needs. More worrisome, young people with autism coupled with associated medical problems are even less likely to receive transition support.

For the study, researchers from the University of Missouri looked at information on 806 adolescents with autism between the ages of 12 and 17. (The information came from a national survey on children with special medical needs.) They compared the teens’ access to healthcare transition services to that of age-matched young people with other lifelong conditions such as asthma or diabetes.

Around half of teens with medical issues other than autism received healthcare transition support. But less than a quarter of those with autism received such support.

Not only that, many young adults with autism lacked any access to healthcare for several years after they stopped seeing a pediatrician. This is especially worrisome because autism is associated with a range of medical conditions including epilepsy, gastrointestinal problems and sleep disturbances. Having multiple medical conditions further decreased the rate of using transition services, to under 15 percent, among the teens with autism.

Increased healthcare transition support has been a goal of the U.S. Maternal and Child Health Bureau for over a decade. Until such systems are in place for autism, the authors recommend that pediatricians take the initiative to discuss transition options with families. This should begin around the time children with autism reach age 12, they write. Then, during the teen years, the patient, pediatrician and parents should begin planning and meeting with the adult-care physician who will assume care.

“These findings add to the picture of a broad lack of services to help teens with autism transition into adult life,” comments Autism Speaks Chief Science Officer Geri Dawson, Ph.D. “This is a pivotal time in the life of a person with autism is preparing for the next stage of life. We must better understand the reasons for these gaps so we can address them and ensure that adults with autism can lead successful, satisfying, and productive lives.”

Previous research has shown that young adults with autism are less likely than those with other developmental disabilities to live on their own, have jobs or attend vocational school or college. (See these related news stories and blogs.)

Autism Speaks continues to fund a broad range of research and family services to support the transition to adulthood. Please see Autism Speaks Transition Tool Kit and this website’s pages on Adult Services. You can explore Autism Speaks’ related research projects here.