Ruling Out Medical Issues in Children with Autism….Easier Said than Done!

As you probably know, I’m both a mom to an adult son with autism as well as a Board Certified Behavior Analyst (BCBA).  But what you may not know that I’m also a Registered Nurse and I find myself frequently reminding people that some behaviors exhibited by children and adults with autism are caused by medical issues and cannot effectively be treated behaviorally.

Here is a little review of the four main functions of behavior. Most Behavior Analysts (including me) really focus on 3 or them. When a child has a problem behavior, it’s usually for three reasons. The first function, or reason is that the child wants something (usually either an item or your attention) and you say no or tell him to wait. The second reason, or function, for problem behaviors is that the child doesn’t want to complete a task such as eating food that they don’t like or taking a bath. And the third reason a child might exhibit problem behaviors is it for automatic reinforcement so that they my rock, make noises or even bang his or her head when they are not actively engaged.

In Chapter 2 of my book, The Verbal Behavior Approach, I cover the first three functions in pretty much detail but I don’t explain the fourth function (Automatic Negative Reinforcement) too well except to mention that children with problem behaviors which come on suddenly or which you suspect might be medical should be evaluated by a physician.

In many cases, however, it is difficult for you or any physician to determine if a problem behavior is caused by a medical issue, especially in children with autism who cannot fully communicate about pain or discomfort. I did a podcast that goes a bit more into the details of problem behaviors related to pain and the four functions of behavior.

I have lots of experience with my own son, Lucas, as well as many clients in the past so I’m going to tell you 2 stories about Lucas to illustrate the importance of looking at medical issues when evaluating a child for the first time or when an established client experiences problem behaviors which start abruptly or increase without a clear explanation.

When Lucas was 6, he started having motor tics. They came on suddenly and over the course of a few days, they were occurring 500 times/day. He also had open wounds on his legs which also appeared “out of the blue.”  I googled “acute onset tics” and found a condition called Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) which is now known as PANS since many cases of this autoimmune disorder are associated with other bacterial infections other than Strep. Once he was started on an antibiotic, Lucas’ tics went from 500/day back to 0. So we had evidence that these tics were caused by a medical problem and without medication, all the the behavioral treatment in the world most likely would not have helped.

When Lucas was 13, he showed an increase in self injurious behavior (SIB) over a few months time. While in the past he would occasionally bite his knuckle at school, the rate and intensity of his knuckle bites went up significantly (from approximately one knuckle bite a day at school to 10 knuckle bites occurring both at home and school). In addition to knuckle bites, Lucas started to sometimes hit his head and cry.

Lucas’ teacher and aid at school kept careful ABC data and the behaviors usually appeared to be related to access to tangibles and/or escape. But the demands were not higher than usual and sometimes he would engage in problem behavior without a clear antecedent. The professionals who worked with Lucas for years were all concerned that his behaviors were worse than ever. I was concerned too and noticed that sometimes at home when he engaged in problem behaviors, he cried real tears (and engaged in SIB) while on reinforcement. At these times when I asked him what was wrong, he would almost always say “eyes” but I didn’t know if he was saying eyes because he was crying or if he was truly in pain.

I knew as a BCBA that these behavior like his TICS years earlier were not being effectively treated behaviorally so we took him to the pediatrician who agreed to do a battery of blood tests and a CAT scan of his head and sinuses.

While the blood work and CAT scan of the head were within normal limits, Lucas’ sinus CAT scan showed “sinus disease” which responded well to antibiotics and allergy medicine.  Lucas also went on to get allergy shots for 5 years which has helped his headaches and sinus issues a lot too.

When I spoke with Dr. Brian Iwata, an internationally recognized behavioral expert, on treating severe problem behaviors after a presentation he did on automatic reinforcement in August of 2016, he told me that no controlled studies have ever been published on problem behaviors with an automatic negative reinforcement function. Yet many BCBAs and parents operate under the premise that the “doctor has ruled out that the behaviors are related to medical issues” therefore they go full steam ahead trying to reduce these problem behaviors using ABA principles alone.

I believe that it is nearly impossible to rule out all medical conditions that may be causing or contributing to problem behaviors, especially in children and adults with moderate to severe autism who also have major language delays.

So what can you do with this information….

  1. Think about medical issues that could be at play when assessing a new child or if an existing client shows an abrupt increase in problem behaviors.  Many medical professionals now believe autism is an autoimmune disease so researching PANDAS/PANS at may be a good starting point.
  2. Keep and share data between home and school so parents can share behavioral data with the child’s physician
  3. If you are a BCBA or researcher, consider studying behaviors related to medical issues.

Please leave me a comment below and share this post! If you want to learn even more on this week’s topic, check out my podcast episode on ruling out medical conditions. Also, watch next week’s blog where I’ll discuss how to teach children with autism how to tell you when they are in pain.