Researchers Ask How Children With Autism Communicate Pain

When children with autism spectrum disorder (ASD) have acute medical needs, such as a broken bone or appendicitis, they are as likely to experience pain as any other child. But social and communication differences associated with ASD may cause clinical caregivers to miss cues showing that pain. This may compromise timely and accurate assessment and treatment. Recognizing this challenge, researchers at The Children’s Hospital of Philadelphia conducted a qualitative study that suggests clinicians should be prepared to ask children on the spectrum about pain in different ways.

The interdisciplinary study team set out to learn more about how these youth express and describe the experience of pain. They enrolled participants with an ASD diagnosis who came to CHOP for surgery and whose verbal language proficiency was sufficient to complete interviews about their pain during their hospital stay after their operation. The results were published in January in the Journal of Developmental and Behavioral Pediatrics.

While there are validated tools for measuring pain in nonverbal and cognitively impaired patients, those categories only sometimes overlap with ASD. The study participants’ individual preferences varied among different standard pain-measurement tools, such as a one-to-10 scale, or a similar common scale for children using a series of happy to sad faces. Many preferred to use words instead of numbers, and some preferred to show where it hurt, either by pointing on their bodies or drawing on a body-shaped outline on an iPad.

The study team determined that a variety of interactive methods and observations were necessary to assess pain accurately in these children, including asking about where it hurt, and about the characteristics and intensity of the pain, in ways that were meaningful to the child. Overall, they found that verbal children on the spectrum had a wide range of preferences for describing pain, and many relied on their parents as interpreters and advocates.

“We found the kids were quite able to describe their pain and used very sophisticated words sometimes, such as ‘excruciating,’” said Elizabeth Ely, PhD, RN, a nurse researcher and pain assessment expert at CHOP’s Center for Pediatric Nursing Research and Evidence-Based Practice, who led the study. “The words were descriptive, which helps you grasp what they’re feeling.”

Most of the young people with ASD had ideas about how to manage pain. Common methods included medication, distraction, and asking their parents for help.

Distraction is a common tool that many people use to deal with pain, whether on the spectrum or not, and at any age. But in this population, Dr. Ely noted, self-distraction may include engaging in repetitive behaviors or motions that are common among individuals with ASD — and that behavioral difference could stymie clinicians.

“Behavior is not the best way to understand pain in children with autism,” Dr. Ely noted, because the behavioral changes in these children are less likely to follow the typical, familiar patterns of other children in pain. “Think about the fact that the child has a source of pain and treat them accordingly. There is no evidence to say that children on the autism spectrum feel pain any differently, and they deserve adequate pain management. They can tell you what they think needs to happen, and their parents can tell you.”

Parents may be able to use their greater familiarity with their children’s behavioral responses to help interpret pain for clinicians if the child does not express it verbally. Several parents noted that they had gone through a learning process to recognize these cues in their child. Many of the children turned to their parents in their interviews for confirmation of their statements. As one participant stated, “Tell my mom. My mom understands my pain and what I need” — reflecting a common theme among many of the youth, acknowledging their parents’ ability to understand and help.

All of the interviews in the study were conducted by Dr. Ely and Kate Carpenter, MEd, CCLS, a child life specialist at CHOP. The research was funded by the Mayday Fund.

With study co-author Eron Friedlaender, MD, MPH, an emergency medicine physician at CHOP and professor at the Perelman School of Medicine at the University of Pennsylvania, Dr. Ely next hopes to build on this research with a quantitative study of potential differences in pain treatment for children with ASD. They are beginning to look at large datasets of electronic medical records to determine whether there are any systemic differences in the pain management children on the autism spectrum receive compared to typically developing children.

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