Giving Pain a Voice

Kara Gross Margolis, MD, associate professor of pediatrics at the Columbia University Vagelos College of Physicians and Surgeons and NewYork-Presbyterian/Columbia University Irving Medical Center, explains a new questionnaire she developed to enable caregivers to better identify and alleviate GI pain in non-verbal children with ASD. She and her team investigate the causes of GI conditions in children with ASD, which are four times as common in comparison to children without ASD.

Why is there a need for such a questionnaire?

Children with autism may have very troubling behaviors, such as anxiety, anger, self-injury, or aggression, and these behaviors are often linked to untreated GI problems. To date, there has been really no good way to detect GI conditions in children with ASD because many of these kids are nonverbal, and those who are verbal, including kids with Asperger's who have good language facility, have very poor sensory localization and trouble verbalizing that they have pain. At the same time, we know that GI problems are very common in kids with ASD: about 85% of children with ASD have constipation, diarrhea, and/or gastroesophageal reflux disease. Addressing these problems can have profound effects on children’s behaviors. In fact, I've treated non-verbal kids for their GI problems and after treatment they began to talk, so it’s important that we address this.

What might explain the high level of GI problems in children with autism?

We are still learning why this connection exists, but we do know that abnormal serotonin levels are linked to neurodevelopment in both the gut and brain.

How does the questionnaire work?

Standard gastrointestinal questionnaires include questions for the patient about symptoms, such as: “Do you have nausea or pain and where?” The problem is that these questions require responders to verbalize their answers. This new GI questionnaire is intended for kids with ASD who can't express what they’re feeling and it’s designed to pick up on non-verbal signs, and observable effects, such as recurring motor acts, for example, arching the back, stiffening or squeezing the buttocks, applying pressure to the abdomen, or gagging during meals. Each of these signs indicates that the child may have one of the common GI conditions, and we can then evaluate them more fully.

How well does the questionnaire work?

In our preliminary study, the questionnaire had an 84% sensitivity in picking up GI problems in children with ASD, and almost 40% of the kids had a GI diagnosis that wasn't picked up previously. Given these results, we are confident that the questionnaire can be helpful in diagnosing and treating kids more effectively. And it's not only going to be useful for clinical care, but also for research since there's now a lot of interest in figuring out which subsets of children with ASD have different medical comorbidities.