Sometimes bad behavior is a sign of a health issue. For many children with an intellectual 
disability (ID), the first sign of a health issue can be a change in behavior. Sometimes people think the ID is the reason for the behavior. And the health issue is missed.
Our Story: School Problems
I am the parent of a child with Down syndrome. In fourth grade, our daughter’s teachers told us she had been struggling with behavior issues every day. They said she was tired. And they said she couldn’t handle a full day of school. They said school was hard for her because she spent the day with peers who were not delayed. She had problems for weeks, but they didn’t tell us.
Testing Reveals Tummy Trouble
Around the same time, our daughter had a triple-scope of her GI system. The doctors wanted to know if she had celiac disease. (Celiac disease causes the body to get sick when a person eats wheat.) Instead, we found out that she had very bad reflux disease (GERD). The GERD made her belly and throat hurt a lot. Right away, she started medicine to reduce the amount of acid in her stomach. And we changed her diet to remove the food that hurt her tummy the most.
At our next meeting with the school, we talked about my daughter’s behavior problems again. The school said they saw a problem every afternoon around 1 PM.
Putting It Together
At the meeting, we shared the “home update.” Part of the update included the results of the tummy testing. We also talked about the changes to her diet that we were making at home. One of the teachers spoke up. “I guess we should stop letting her buy orange juice at lunch every day?” And there it was. We had our answer to the afternoon behavior problems. Orange juice can increase painful reflux, and probably made her tummy hurt every day.
Figuring Out Our Mistake
We had all attributed her behavior to her disability. Low energy? We figured it was due to Down syndrome. Feeling overwhelmed by the classwork, and the language demands of her peers? That was caused by her low IQ. The school was so certain that her behavior was related to her disability, and not a sign of something medical, that they let weeks elapse before bringing the problem to our attention. As her parents, we did not suspect a medical cause either. It was only luck and good timing that caused us to do the GI testing at that time, giving us the answer to a question we didn’t know we still had.
The Research
For people with intellectual disabilities, physical distress is often associated with changes in mood, mental status, and behavior, as a significant “setting event” (an event that increases the probability of occurrence of problem behaviors). (Gardner & Whalen, 1996;, Gunsett, Mulick, Fernald & Martin, 1989; Carr, Smith, Giacin, Whelan, & Pancari, 2003).
Despite the documented link between health concerns and problem behaviors, medical causes for agitated behavior may frequently be missed in people with ID because they are often poor reporters of their own health issues. (Charlot, Abend, Ravin, Mastis, Hunt & Deutsch, 2011)
Conclusion
When a change in behavior is observed, medical causes should be considered first. This is true of all children. It is especially true for children with ID. Children with ID are often less able to share that they are hurting somewhere. And research has demonstrated that behavior problems due to health issues are missed in people with ID. Their caretakers should first figure out if any behavior is related to a medical cause.
For more information about behavior issues that are not caused by health issues, the book Supporting Positive Behavior in Children and Teens with Down Syndrome contains a wealth of information. (David Stein, Psy.D., Woodbine House, 2016)