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A Valuable New Tool for Patients on the Autism Spectrum

Female doctor with a young girl patient and her mother

Imagine being a child checking into a hospital for a major surgery or standing by for an appointment in a physician’s busy waiting room. Pretty overwhelming, right? Now, imagine that environmental stimuli such as bright lights, loud sounds and bustling crowds cause you significant distress, or that you’re unable to speak to ask questions about where you are and what’s going on. Your stress level probably just grew immensely. For many children on the autism spectrum, that’s reality, making health care facilities potentially troubling or scary places.

With about 20,000 visits with children on the spectrum occurring at Rady Children’s Hospital-San Diego and its satellite locations each year, Lisa Miller, manager of clinical informatics and central support on the patient care services team, was hearing many accounts of kids having a tough time during visits, especially in areas such as surgical services and the emergency department. Along with the obvious stress on patients and their loved ones, this was often contributing to escalated situations, longer or canceled appointments and interruptions in care, and a decrease in clinicians’ self-confidence in supporting the needs of children with ASD.

So, Lisa began pondering. “I thought, ‘How can we best get information on how to make visits less traumatic to the staff caring for our patients with special needs?’” she says. Her idea: a questionnaire for families to complete on their child’s abilities, needs and preferences, which would be housed in their electronic medical record. “With my role, I have a unique view of both EPIC (our electronic health record) and the staff at the bedside,” Lisa explains. “Giving them the tools in EPIC that families can fill out when not stressed can give us the crucial information we need to best care for the patient when they have to come to the Hospital.”

Lisa proposed the concept to Kristin Gist, senior director of developmental services, who hit the ground running by forming a task force of experts from areas of the Hospital including developmental, surgical and child life services; IT; the ED; the pediatric acute care unit; nursing education; and the Child & Adolescent Services Research Center. A parent representative also joined in to offer guidance from a family’s point of view. “The AFQ improves communication between parents and staff, and reassures parents that their valuable knowledge about how to make a visit successful is available to their child’s care team — even before a visit begins,” the parent states. “Parents of children with autism often need to alert staff to specific behaviors and situations that may cause a child distress or even be unsafe for the child or staff.”

Once established, the task force began brainstorming questions to include on the survey, with members reaching out to other pediatric hospitals; such as Boston Children’s Hospital, Cincinnati Children’s Hospital Medical Center and Children’s Hospital of Philadelphia; all of which have proven and respected autism-friendly experience models in place.

After months of development, revisions and intensive collaboration with internal and external partners, the Rady Children’s Autism-Friendly Questionnaire (which was adapted from Boston Children’s model) officially launched in January 2020 and is now available in clinical areas with the highest population of patients with ASD: developmental services, surgical services and the emergency department. “This is such a short survey, but the results are available to everyone working with a child and can be used to proactively and creatively address a family’s concerns,” the parent rep adds. Questions include the following:

What is the best way to communicate with your child?

  • Verbally (fully fluent)
  • Verbally (single words/phrases)
  • Pictures
  • Writing it down
  • Communication device
  • Sign language
  • Other

What might cause your child to be anxious and/or agitated?

  • Lights
  • Medications
  • Multiple care providers or groups of people
  • Smells
  • Sounds
  • Tape/Band-Aids
  • Tastes/textures
  • Touch
  • Other

What are helpful techniques to support a positive experience for your child’s visit?

  • Bubbles
  • Headphones
  • iPad
  • Allow time to think about questions/instructions
  • Simple, direct language
  • Visual schedule
  • Written schedule
  • Weighted vest/blanket
  • Self-soothing behavior
  • Fidgets
  • Pressure
  • Provide two to three choices when offering items/activities
  • Keep lights dimmed
  • Keep noise levels low
  • Music
  • Give two-minute warning before changes
  • Model of any procedures
  • Medication
  • Other

This launch has also come with new workflows for staff so the AFQ reaches as many families as possible, even in fast-paced, high-urgency environments like operating rooms and the ED. “The AFQ is about taking time to slow down, ask new questions and listen, and then putting each family’s unique responses into action to optimize outcomes for everyone involved in a patient interaction,” Kristin comments. “It’s a different process and pace than usual for somewhere like the ED, but for this situation, that’s what we’re aiming for.”

In addition, through funding from the Mabel Jessop Endowment, Abbey Hye, a board-certified behavior analyst at Rady Children’s Autism Discovery Institute, is now stationed in the ED for two 10-hour days each week to offer additional support to patient families and staff. “Every time she’s at the autism institute, there’s someone to help, and learning how to respond to one child helps the team know what to do for another, even though each response will be unique and different,” says Kristin.

In its first two weeks alone, the AFQ had close to 700 respondents, and garnered positive feedback from parents and staff alike. “We’ve been getting a number of comments from families stating they’ve never been asked questions like this in a care environment, and that it has made them feel reassured they’re in the right place for their child,” Kristin reports. “That response is so heartwarming and encouraging to hear, and we’re looking forward to expanding the AFQ into many, many more clinical areas throughout the organization.”

Along with a broader roll-out in the works, the task force has also put complementary initiatives in place to bolster staff awareness, knowledge and confidence. For example, staff can engage in training modules to familiarize themselves with the AFQ/electronic medical record interface and with strategies for tailoring care for patients on the spectrum, and can also take a questionnaire of their own that assesses their knowledge of ASD needs, resources around the Hospital and experience working with children with ASD.

The survey also provides the AFQ team with valuable data on where to focus efforts as Rady Children’s expands its program. “We want staff members beyond those that provide clinical care to take this survey,” Kristin explains. “Whether someone is a security guard, a marketing professional or an administrative representative, we all play a part in making Rady Children’s a warm, welcoming and autism-friendly place for families.”