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Autism in the ER

Rady Children’s offers specialty help in emergency health

Some 21,500 children on the autism spectrum visit Rady Children’s Hospital each year, more often visiting the emergency department (ED) for a range of medical and behavioral concerns.

Some of those children get to meet Abbey Hye, a behavioral specialist and Board Certified Behavior Analyst with Rady Children’s Autism Discovery Institute. Two days a week, she’s stationed in the Sam S. and Rose Stein Emergency Care Center at Rady Children’s to help pediatric patients with autism, their families and health care staff work together for a successful ED experience.

Hye is there to help wherever she’s needed, from the waiting lounge to the exam room to patient discharge. “We provide proactive behavior support throughout each step of the visit,” she says.

Autism is a complex neurodevelopmental condition that affects people differently but often includes difficulty with communication and social interaction and restricted or repetitive patterns of behavior, thoughts, interests and activities.

Children with autism can become especially anxious or agitated in situations where their senses are overloaded—like a visit to a noisy, brightly lit, bustling ED. Even a relatively routine procedure, like placing an IV, can create a stressful situation for the patient, parent and nurse alike, Hye says.

“We work to slow down and determine what strategies will help make the experience less scary and avoid behaviors that get in the way of the patient accessing necessary medical care,” Hye says.

Since late 2019, Hye and her colleagues have used a three-pronged approach to improve care for kids with autism. The Autism Friendly Health Safety Initiative includes a parent questionnaire, an autism-tailored toolkit and training for hospital staff.

The questionnaire helps the health care team identify if an autistic child has any specific sensory or communication needs. Parents are asked what makes their child uncomfortable—for instance, too many people in a room or certain smells or sounds— and how they might express that distress.

“The rationale behind this questionnaire is parents know their child best,” Hye says. “Don’t have reservations about sharing and advocating for your child.”

The questionnaire also asks parents what typically calms their child in stressful situations or helps them to cope. Music? Fidget toys or bubbles? A written schedule? That’s where the toolkit comes in. It’s stocked with sensory items designed to soothe, distract, and motivate the child during their visit.

Autism experts are in the ED 20 hours a week. Outside of those hours, the emergency staff can lean on what they’ve learned during their previous collaborations and trainings with the autism team.

“We’re teaching staff to slow down and put a proactive plan in place in a typically fast-paced environment.,” Hye says.

Rady Children’s Hospital began offering greater support for patients on the autism spectrum in response to data showing that autistic children have trouble accessing health care. A difficult doctor’s visit can mean an increase in interfering behaviors at the next visit or even canceled appointments. Doctors and nurses also need the confidence to care for autistic children.

“This was inspired by the needs of patients and medical staff,” Hye says.