A version of this article first appeared in iancommunity.org.
When Luther Kalb worked at a hospital unit for children with psychiatric problems and developmental disabilities, he heard “horror stories” about the children entering the hospital through the emergency room (ER). An ER, by its very nature, involves some degree of controlled chaos, and children with sensory, learning and speech problems may find it overwhelming.
Later, as a researcher at Kennedy Krieger Institute in Baltimore, Kalb wanted to learn more. “When I started looking in the medical literature, there really wasn’t much about autism and the emergency room for mental health services,” he says.
He became part of a team that created the first large study of psychiatric-related emergency department visits for children with autism spectrum disorders (ASD) ages 3 to 17. A study the team published in 2012 contains two interesting conclusions:1
- Children with ASD are nine times more likely to visit an ER for psychiatric problems than children who don’t have autism. Physical aggression, disruptive behavior, running away and hurting oneself are the main reasons for such visits in autism.
- Among children with ASD, those with private insurance are 58 percent more likely to go to the ER for psychiatric reasons than are those with government-funded medical assistance. “These children were also more likely to live in a zip code with a higher median income, located in a metropolitan or urban area,” among other things, the study found.
MANAGING AUTISM IN THE ER
The second finding was surprising, or counterintuitive, according to the study’s authors. Conventional wisdom suggests that children whose parents can afford private insurance will have greater access to mental health and behavioral services in the community and will be less likely to use ERs for such care.
But the reverse seems to be true. The study theorized that this may be because some private insurance plans do not cover mental health services for autism, strictly limit the number of treatment sessions or require patients to see a relatively small number of network providers.
If a child has a major outburst, a parent may have no other place to go for urgent care than the ER. Such a visit may cost more than $1,200, and “these resources would be better used to fund less expensive, more targeted and higher-quality outpatient care,” according to the study.1
Kalb knows firsthand the insurance maze some families must navigate. When he was a hospital discharge coordinator, he negotiated with private insurance companies on inpatient psychiatric care for children. “I was in a fight with them every day because they wanted to cut care short,” he says. “Then you have to consider that autism is not a billable diagnosis for many behavioral health care plans.”
As the study points out, hospital emergency rooms pose “particular problems for children with ASD.”
Children with autism often feel anxious in new places. They may not be able to understand medical tests and hospital procedures, because of their language and learning problems, Kalb explains. “It’s not the best place to manage behavior,” he says.
Also, ER staff may not be well trained in handling behavioral problems in autism.
“Emergency Room clinicians are trained in the management of aggressive and disruptive behavior in typically developing children, but they may not be familiar with how to manage a child with autism who has severe behavior problems,” explains senior author Roma Vasa, a child psychiatrist in Kennedy Krieger Institute’s Center for Autism and Related Disorders. “Caring for that child is different because of his or her language, social, learning and sensory problems. Moreover, many children with autism have anxiety about medical procedures. Collectively, these challenges can make the ER experience overwhelming and potentially traumatic for a child with autism.”
One surprising finding was the large number of children with autism seen in the ER for psychotic disorders. Vasa suspects that this is largely a misdiagnosis. “Individuals with autism can have a psychotic disorder, but we think this is a misinterpretation of the child’s behavior that occurred in the context of the child’s underlying language, cognitive and social impairments,” she says.
FINDING OUTPATIENT PROVIDERS
The study also suggested another reason for the high rate of ER visits in autism: Families may not be able to find outpatient mental health providers with training in autism.1
In a separate study published in 2012, 2 a research team from San Diego found that therapists themselves complained of insufficient training in autism. The study team surveyed 100 therapists in community mental health clinics in California. They reported that many therapists found it “challenging and frustrating” to treat children with ASD because they have “very limited training with this population.” They were desperate “for further training to work more effectively with these families.”
Another research group examined visits to a New York pediatric ER for psychiatric care. Their study included both children with and without ASD. It classified about a third of the ER visits as “inappropriate,” because the problems could have been handled in an outpatient setting. In some cases, schools and mental health providers referred children to the ER before they saw a psychiatrist because a psychiatric appointment was not available.3
Kalb, Vasa, and their coauthors concluded that outpatient psychiatric services for children with autism need to be improved to prevent unnecessary ER visits, particularly for those with private insurance who currently do not have better options. They also recommended more training for ER staff on psychiatric and developmental disabilities and more research on the effect of insurance on mental health care for people with autism.
The team used data from the 2008 National Emergency Department Sample in the U.S. The researchers examined data from more than 3.9 million ER visits by children. More than 13,000 of those visits involved children with ASD.
EASING STRESS IN THE ER
To help parents, Vasa has created “Six Tips to Prepare for a Mental Health Crisis in Children on the Autism Spectrum.” whose contents are summarized here:
- Make an appointment with a psychiatrist before behaviors worsen.
- Create an emergency plan that outlines what to do during a crisis, such as following a behavior intervention plan, calling 911, or going to the ER.
- Review the plan often with babysitters, teachers, relatives and others who may be affected or involved.
- Ask if you can meet with someone at the nearest ER before a crisis hits, or visit on your own to see what it’s like there.
- Find out if there are hospitals with psychiatric units where your child could go if necessary.
- Find out if mental health treatment is covered by your private insurance policy and how to obtain it.
Vasa further suggests that to find mental health providers with expertise in autism, a parent may contact a nearby university or an organization such as the Autism Society of America.
- Kalb, L.G., Stuart, E.A., Freedman, B., Zablotsky, B., & Vasa, R. (2012). Psychiatric-related emergency department visits among children with an autism spectrum disorder. Pediatric emergency care, 28(12), 1269-1276. View abstract.
- Brookman-Frazee, L., Drahota, A., Stadnick, N., & Palinkas, L.A. (2012). Therapist perspectives on community mental health services for children with autism spectrum disorders. Administration and policy in mental health, 39(5), 365-373. View abstract.
- Soto, E.C., Frederickson, A.M., Trivedi, H., Le, A., Eugene, M.C., Shekher, M., Weiskopf, M., Allen-Dicker, K., Dicker, R., Fornari, V. & Correll, C.U. (2009) Frequency and correlates of inappropriate pediatric psychiatric emergency room visits. Journal of clinical psychiatry, 70(8):1164-1177. View abstract.