Child, adolescent autism patients visiting EDs in higher numbers

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. 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.