Why do teens with autism go to the ER more often?

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Adolescents with autism spectrum disorder use emergency-department services four times as often as their peers without autism, according to a new study. This suggests they may need better access to primary care and specialist services.

Researchers looked at private insurance healthcare claims from 2005 to 2013 in 12- to 21-year-olds. Adolescents with autism received at least two separate diagnoses of ASD over the timeframe. Two diagnoses reduce the chance of including misdiagnoses.

Although there was no significant increase in autism rates among adolescents in the study over the nine-year period, emergency-department use in adolescents with autism increased five-fold, from 3 percent in 2005 to 16 percent in 2013.

During the same time period, emergency-department use in adolescents without an autism diagnosis remained steady at around 3 percent, report researchers in the Journal of Autism and Developmental Disorders.

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On average, adolescents with autism had a four-times higher risk of visiting the emergency department than adolescents without ASD. Older adolescents with autism visited the emergency department more often than younger children.

A third of middle and late adolescents in this group had medical emergencies, compared to just one-tenth of early adolescents.  Girls were more likely to visit the emergency room than boys and people living in rural areas were more likely to visit the emergency room than those living in urban areas.

There was an increase over the study period in adolescents with autism who visited the emergency department for a mental health crisis. By 2013, 22 percent of emergency-department visits included a behavioral health concern, compared to 12 percent in 2005.

Previous research has shown that although youth with autism should be visiting primary care doctors and specialists more often than their peers, they don’t appear to be.

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There could be a link between this underuse of preventive care services and overuse of emergency-department services, says Guodong Liu, assistant professor of public health sciences at Penn State and lead author of the study. “We believe if their regular medical and behavioral specialist services served them better, a big portion of them would end up with fewer emergency-department visits.”

While changes related to puberty and the transition to adulthood may be more difficult to manage for youth with autism compared to their peers, parents and other caregivers may not be aware that they need extra guidance and support.

Some adolescents with ASD may injure themselves physically during times of stress, by cutting themselves, for example. “The consequence is they’re more likely to end up in the emergency department,” Liu says.

Researchers hope the study will bring more attention to the behavioral and physical health needs of autistic adolescents, whom he said are both underserved and understudied—especially compared to younger children with ASD.

Liu is planning a similar study of emergency-department use in adolescent Medicaid patients with autism. His goal is to plot an unbiased nationally representative picture of how these young people fare in terms of emergency-department use and hospitalizations.

“These patients need to be actively taken care of and monitored,” he says. “There should be better communication between these adolescents and their caregivers and with their regular pediatricians and specialists. If we can do those kinds of things we may help them have less frequent emergencies.”

The National Institutes of Health and Penn State College of Medicine Junior Faculty Development Program funded the research.

Source: Abby Sajid for Penn State