NEW YORK – Emergency departments are seeing more pediatric and adolescent patients with autism spectrum disorder, and are struggling to meet their needs, experts say.
At the annual meeting of the American Academy of Child and Adolescent Psychiatry, researchers presented results from studies attempting to quantify and better understand the uptick in ED visits, while clinicians shared strategies aimed at improving care in a setting that, nearly all agreed, presents unique obstacles for treating children with ASD.
Bright lights, excess noise, frequently changing care staff, and a lack of training in nonverbal communication strategies were among the problems the clinicians highlighted.
“There’s been a huge increase in recent years in the number of children with ASD that are coming into the ED because of either behavioral crises or general pediatric medical concerns that require us to intervene,” said Eron Y. Friedlaender, MD, MPH, of Children’s Hospital of Philadelphia (CHOP). “Yet, we struggle to offer kids with challenging behaviors or communication vulnerabilities the same standard of care that we’re used to offering.”
John J. McGonigle, PhD, head of the autism center at the University of Pittsburgh, noted that incidents tied to safety issues, such as disruptive behavior, aggression, and self-injury, were occurring among young ASD patients in the ED. In 2015, he said, Pennsylvania’s statewide patient safety data reporting system reviewed hospital records from 2004 to 2014 and recorded 138 events in the ED involving patients with ASD, 86 of them involving children and adolescents.
Dr. John McGonigle
Dr. McGonigle said that such incidents, often accompanied by use of restraints, can be reduced through better training, and that ED practitioners and staff can be shown how to help calm patients and to provide the kind of simple, clear communication required to diagnose and treat them effectively. He showed excerpts from a training video produced at his institution to illustrate those strategies.
Patients with ASD should be moved away from bright fluorescent lights, and excess medical equipment and noise – ideally to a sensory room, Dr. McGonigle said – and given toys or other comforting activities appropriate to their interests. The number of people in and out of a patient’s room should be limited, and providers always should knock first on a door and wait for an answer, and introduce themselves by name, whether or not the child is able to respond.
Clinicians should recruit caregivers to help question patients, keep questions to a yes-no format, and not insist on eye contact. A “first-then” approach should be used to explain any intervention, describing the intervention and then an age-appropriate reward to follow. Interventions, even noninvasive ones, can be modeled or demonstrated first on caregivers.
Psychiatric crises are an important driver of ED visits among ASD patients, but crisis behavior should not be assumed to have a psychiatric cause, Dr. McGonigle stressed. Behavior mimicking a psychiatric episode “could be triggered by stomachache, ear infection, bowel obstruction, [urinary tract infection], hyper- or hypoglycemia.”
Communicating about pain is particularly challenging in patients with ASD, Dr. McGonigle said. The usual pain scales used in the pediatric ED rely on representations of facial expressions. These should be replaced by demonstrations using toys, tablet computers, or drawings to identify sources of pain, with a caregiver present to help.
Finding barriers to care
Dr. Friedlaender described a pilot study she and her colleagues conducted in her institution’s sedation unit that was designed to help them understand the barriers to optimal care for ASD patients, and to find ways around them. Many of the studies the investigators consulted “came from the dental literature, where there is a significant number of special-needs kids who need support during procedural care. [Dentists] were among the first to publish on how to make this a reasonable experience.”
One key insight gleaned from this literature, Dr. Friedlaender said, was that a simple screening question – whether the child could sit still for a haircut – proved sensitive in indicating a need for accommodation.
The CHOP researchers created a three-question universal screening tool that schedulers asked of all caregivers when a child presented to the ED. In addition to asking whether the child could sit still, schedulers asked whether he or she had a behavioral diagnosis or special communication needs. Of 458 families who completed the screening, 96 answered positively to at least one of the questions, and 79, or 17% of the cohort, indicated a behavioral diagnosis.
Such information previously had been missed, Dr. Friedlaender said, because “many families didn’t consider autism part of a medical history – if we didn’t ask about it, they didn’t share it.”
Her group also conducted a study on the effectiveness of self-reported pain scales in 43 verbal ASD children aged 6-17 who had undergone surgical procedures. Dr. Friedlaender said she suspected that it was impractical to ask children with ASD to use only pictures of facial expressions to indicate their pain.
The subjects were asked to circle images of faces with expressions corresponding to their pain. They also were asked to locate their pain by drawing it on tablet computers, and given poker chips to represent their degree of pain, with one chip the least and four the most. Caregivers were recruited to assist with questioning and interpreting responses.
All children in the study were able to describe and locate their pain. “We learned that there isn’t one universal pain tool that works for all kids,” Dr. Friedlaender said, “but that facial expressions and body language don’t often match pain scores” in ASD children. The study also revealed that parent or caregiver mediation is helpful in discerning the location and intensity of pain.
Why ED use is high
Other research presented at AACAP sought to grasp the scope of, and reasons behind, the increase in ASD youth seen in hospital emergency departments.
Michael J. Murray, MD, of Pennsylvania State University in Hershey, found using commercial insurance data from large employers showing that ED visits increased from 3% in 2005 to nearly 16% in 2013 among youth diagnosed with ASD, while a non-ASD comparison cohort saw a far more consistent rate of ED visits across the same time period, of about 3%. Adolescents with ASD were nearly five times more likely to have had an ED visit than were non-ASD adolescents (95% confidence interval, 4.678-4.875).
Dr. Murray said in an interview that the ASD cohort identified in his study “was smaller than it should have been,” compared with Centers for Disease Control and Prevention prevalence data. One likely reason is that not all the insurers had to cover ASD in the first years of the study period. Dr. Murray said he thinks a new study using public insurance data might provide a fuller picture.
Dr. Murray and colleagues’ study, which looked at youth aged 12-21, revealed that being older increased the likelihood of an ED visit. “We think it may have to do with the whole transition out of school,” he said. “This is the first generation with ASD that’s accustomed to having good school-based supports.” The transition to adulthood “is a really important time, and that’s when we’re pulling away from them.”
Sarah Lytle, MD, of University Hospitals Cleveland Medical Center, presented a literature review of ASD youth in the ED from 2006 through 2015. Dr. Lytle found that children with ASD were more likely to visit the ED than were those without ASD. In addition, the review showed a higher proportion of ED visits for psychiatric problems (13% of visits vs. 2% for non-ASD youth). Youth with ASD were more likely to be admitted to a psychiatric unit or medically boarded in the ED, she found. They also were more likely to have public insurance.
Dr. Lytle’s study drew from a dozen published studies in different age groups (subjects ranged from 0 to 24 years across studies). Though it was difficult to draw conclusions related to which saw the highest ED use, one study found the risk of ED use higher in adolescents, compared with younger children, she said. “One thing I see clinically is that when kids hit the age of 12, pediatric psychiatric units often won’t take them,” she said, as children are physically bigger and may be harder to manage. “And then they’re cycled into the ED,” she said.
Creating the ‘ASD care pathway’
Clinicians from New York shared their experiences designing and implementing an autism care pathway within the state’s only pediatric psychiatric emergency department.
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.
Dr. Ruth Gerson
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. Beryl Filton
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.”