New Study Says Chronic Pain May Explain Behavioral Changes in Kids on the Spectrum

A new study that shows a significant overlap between chronic pain and autism is a great reminder that for kids on the spectrum, behaviors are first and foremost a communication tool for how they’re feeling.

A research letter published in JAMA Pediatrics in October suggests that kids on the spectrum are more likely to experience chronic pain compared to their typical counterparts. Researchers compared health data from nearly 50,000 neurotypical and neurodiverse kids between the ages of 6 and 17. The results of their analysis suggest nearly 16% of kids on the spectrum and almost 20% of autistic kids with a developmental disability experience chronic pain. Only 8.2% typical kids reported chronic pain.

Study co-author Danielle Shapiro, Ph.D., an assistant professor of clinical psychology at the University of Michigan, said there may be several reasons children on the spectrum experience more chronic pain. This could include having a chronic condition that causes pain and a higher frequency of medical procedures to address these conditions. Shapiro also said sensory sensitivities may contribute to chronic pain.

“Children [on the spectrum] also have sensory sensitivities, meaning that physical sensations may be experienced differently or bother them more,” Shapiro told U.S. News. “Painful experiences may, therefore, cause them more distress.”

Other studies have highlighted a link between autism and a higher rate of gastrointestinal issues compared to typical children. One study, for example, found approximately 84% of kids on the spectrum experienced gastrointestinal symptoms, like gas, bloating and constipation, compared to 31% of kids not on the spectrum. Both GI tract symptoms and chronic pain symptoms cause discomfort. It’s important for parents to keep this in mind because autistic kids may express their pain through their behavior.

“Children who have difficulty with communication may show that they are in pain behaviorally, which may take the form of increased irritability or behavioral problems,” Shapiro said. “A sudden, otherwise unexplained change in behavior is a good clue that something physical, like pain, may be a factor.”

When a child is diagnosed with autism, much of their early interventions may be focused on behavior. But like stimming — repetitive movements that help regulate an overwhelming experience — behavioral expressions serve an important purpose. As Mighty community member Shayna G. shared, “Autism is a lot more than behaviors. It’s the way we process things.”

Mighty contributor Chloe Rothschild advised others to pay attention to these behaviors in her article, “When My Autism Kept Me From Communicating Pain From Interstitial Cystitis” because for kids on the spectrum, behavior may be the best way they can communicate pain, discomfort and frustration. Rothschild wrote:

I often have a hard time describing, expressing and communicating pain, even though I am verbal, this is due to my autism. Pain is such an abstract concept. We often hear the phrase, ‘Behavior is communication.’ This phrase is so important. Please, please consider medical or health issues being a possibility when seeing an individual experience behavior that seems unusual for them, out of sorts or increases for no apparent reason.