Interactive Autism Network at Kennedy Krieger Institute
Date Published: February 18, 2013
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 quickly find it overwhelming.
Later, as a researcher at Kennedy Krieger Institute, Mr. 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 said.
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. Its recently published study has two interesting conclusions:1
- Children with ASD were 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 were the main reasons for such visits in autism.
- Among children with ASD, those with private insurance were 58 percent more likely to go to the ER for psychiatric reasons than children 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 authors. Conventional wisdom suggests that children whose parents can afford private insurance would have greater access to mental health and behavioral services in the community and would 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
Mr. Kalb knows first-hand the insurance maze some families must navigate. When he was a hospital discharge coordinator, he negotiated with private insurance companies on in-patient psychiatric care for children. "I was in a fight with them every day because they wanted to cut care short," he said. "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 due to their language and learning problems, Mr. Kalb explained. "It's not the best place to manage behavior," he said.
ER staff also may not be fully 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," explained senior author Roma Vasa M.D., 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. Dr. 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 said.
Finding Outpatient Providers
The study also suggested other reasons 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
According to another study published in 2012, 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."2
Another research group examined visits to a New York pediatric ER for psychiatric care. The 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 an appointment was not available.3
Mr. Kalb, Dr. Vasa and their co-authors 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.
The authors, in conjunction with IAN, are designing a future study to see if some children with autism have multiple visits to the ER. They also want to determine the amount by which ASDs are underreported during ER visits. That study may involve SSC@IAN families.
Easing Stress in The ER
To help parents, Dr. Vasa has created "Six Tips to Prepare for a Mental Health Crisis in Children on the Autism Spectrum," which is 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.
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 or Pathfinders for Autism, Dr. Vasa suggested.
- 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. 2012 Dec;28(12):1269-76. 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. Adm Policy Ment Health. 2012 Sep;39(5):365-73. 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. J Clin Psychiatry. 2009 Aug;70(8):1164-77. View abstract.
Illustrations: Microsoft Office / Photo: Kennedy Krieger Institute