Child, adolescent autism patients visiting EDs in higher numbers

At NYU Health and Hospitals/Bellevue, a public hospital, clinicians found themselves struggling to manage ASD patients, who comprise between 10% and 20% of children seen. “Most of our staff, and even our child psychiatrists, had previously had very little experience working with kids with autism, and that was true for most of our child psychiatrists as well,” said Ruth S. Gerson, MD, who oversees the hospital’s Children’s Comprehensive Psychiatric Emergency Program.

The ASD patients “were in crisis all the time, and having constant behavioral outbursts,” said Beryl J. Filton, PhD. The team responded by developing an autism-specific care pathway for the ED and inpatient units, with a 4-hour training course for all staff members.

The pathway begins with a tip sheet for providers conducting the initial evaluation in the ED. Providers “ask questions specific to symptoms of autism: Does the child have words? How much do they understand? Do they communicate in other ways that are nonverbal? Then we talk about the child’s warning signs, triggers, preferred activities and rewards,” Dr. Filton said. This allows providers to gather information up front that can be used during the ED stay.

Picture books and visual communication boards are used to create a visual schedule for patients, so that they know what to expect, and staff have been trained to communicate through gesturing, modeling, and physical guidance, she said. “First-then” verbal and visual prompts are used before any intervention, including noninvasive interventions, and patients are put on a schedule of rewards as regular as every 15 minutes. They also are engaged in scheduled “motor breaks,” or brief periods of physical activity.

Dr. Filton, like the other providers, emphasized the importance of decreasing excess stimulation around patients with ASD and communicating coping options to them nonverbally. “We talk a lot with staff when patients are getting agitated about giving space and waiting,” she said. “One important thing to recognize is that these patients can take longer after an episode of agitation to return to baseline. So we talk with staff about being on high alert for even a couple hours after an agitated episode to keep demands low and rewards high.”

Many of the strategies and principles that have worked at Bellevue can be generalized to other settings, Dr. Filton said. “Using more than verbal communication, gesturing, visual supports cuing patients, and having reward systems” are effective anywhere for managing patients with autism, she said. The main challenge, she added, is achieving consistency, “making sure all the staff know the same information about the patient.”

Dr. Gerson said some of her team’s challenges come from being part of a public institution serving a low-income community with fragmented health care delivery. “A number of families that are coming in in crisis may not have known that their child had autism,” she said. “We see many who have never been formally diagnosed – even teenagers. Or the child has the diagnosis, but no one helped the family get the services they’re legally eligible for,” she said. “And then the family comes in to the ED and says: ‘We need you to fix all this.’ ”

What ED providers can do, she said, is use the improved assessment tools, and communication and coping strategies outlined in the pathway to “focus on determining the immediate crisis – whether there is change from the child’s usual behaviors, and what’s the pattern of that change.” While youth with ASD have higher rates of comorbid psychiatric disorders, “statistically that’s less likely to be the case in the ED than the stuff that plagues all of us: stomachaches, toothaches, constipation, or psychosocial stressors, such as changes at home or at school.”

One of the goals in creating the ASD care pathway, Dr. Gerson said, was to avoid unnecessary hospitalizations. “We’ve changed our assessment, and really drilled down to determine what hospitalization can and cannot accomplish,” so that only the children likely to benefit stay.

“At the same time, we have to make sure that when we discharge, we’re not leaving families with nothing, that we’re setting them up to receive services and resources to stabilize and support them in the community.”