Ruling Out Autism Medical Problems…Easier Said than Done!

As you probably know, I’m both a mom to an adult son with autism as well as a BCBA.  But what you may not know is that I’m also a Registered Nurse. I often remind people that medical issues can cause some behaviors in children and adults with autism. And you cannot treat medical issues behaviorally. That’s why today I’m talking all about autism medical problems and how you can best help your child or client.

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Four Main Functions of Behavior

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

In Chapter 2 of my book, The Verbal Behavior Approach, I cover the first three functions in a lot of detail, but I don’t explain the fourth function, automatic negative reinforcement, too well. What I do mention is that children with problem behaviors that come on suddenly should be evaluated by a physician.

In many cases, however, it is difficult to determine if a problem behavior is caused by a medical issue. Especially in children and adolescents 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’m going to tell you 2 stories about Lucas to illustrate the importance of looking at medical issues. You can do this when evaluating a child for the first time. You should also do this when an established client abruptly experiences problem behaviors without a clear explanation.

Autism Medical Problems

Lucas started having motor tics when he was 6. 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 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 bacterial infections other than Strep. Once he 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 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, it 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.

Assessing Medical Problems

Lucas’ teacher and aid at school kept careful ABC data. And the repetitive 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. 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.

Automatic Negative Reinforcement

I knew as a BCBA that these behaviors – like his tics years earlier – were not effectively treated behaviorally. So we took him to the pediatrician to do a battery of blood tests and a CAT scan of his head and sinuses. Lucas’ sinus CAT scan showed sinus disease. It responded well to antibiotics and allergy medicine.

I spoke with Dr. Brian Iwata, an internationally recognized behavioral expert, on treating severe problem behaviors using autism research. He said no controlled studies have ever been published on problem behaviors with an automatic negative reinforcement function. Yet many BCBAs and parents assume 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 autism medical problems 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, an intellectual disability, attention deficit, or sleep problems.

What can you do with this information about autism medical problems:

  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 www.Pandasnetwork.org or by going to the centers for disease control online 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, including risk factors and risks of autism.

Please leave me a comment below and share this post! If you want to learn even more about autism medical problems, check out my podcast episode on ruling out medical conditions. Watch next week’s blog on how to teach children with autism to tell you when they are in pain. You can also join my free workshop by going to marybarbera.com/workshops.

8 comments

  1. My son Kenton, has autism as well as heart issues. He’s 8 years old, received his heart transplant in 2010. His behavioral changes when he’s in school. When he’s not in Schoool his behavior is better. How do we get him to behave at school?

    1. You could request a Functional Behavior Assessment (FBA) be done by a Board Certified Behavior Analyst (BCBA) when he’s at school to determine the function of his problem behavior and this BCBA could also develop a positive behavior support plan after the FBA. You may want to look at Wrightslaw.com for more information on how to request this.

  2. My son, age 9, is autistic, he is verbal, but finds it difficult to convey his thoughts. I also believe he has either a high pain tollerence or doesn’t feel pain like most. A few months ago his hyperactivity increased (he has ADHA, among a slew of other issues) so we upped a med and were seeing an improvement. Then about a month ago we were blindsided by major melt downs that ran the gambit from eloping (he almost unknowing to a 40′ header into a river) to physical aggression to himself and others (including suicidal thoughts). This last month, we’ve had 3 ER visits (one via ambulance from school, 2 mental health holds and another parmedic visit leaving him home since we already had a long-term plan in the works and for now I can handle him. Hopefully, he can start ABA in the next week, but I can’t help, but feel something else is wrong since it came on rather suddenly. I did take him to his pediatrician and he feels that my son wasn’t processing well enough and therefore wasn’t on a therapeutic dose of his ADHD med, which made sense at the time. However, after watching this I am not so sure if it isn’t something else. Is there something else I should be asking his doctor for?

  3. Hi! I have 2 daughters with Autism and ADHD and many others. My younger one has had an issue with bad behaviors for quite some time. I have noticed that she usuly does not get bad unless she is hurting or something like that.She also is limited on her verbal skills.So it is hard for her to communicate what is wrong. She also have been diging at her scabs from cuts or sores as well. The next oldest has recently been diognoste with aggsiete and depression so her bad behaviors stem from that and stress. I have been watching her as well.

  4. My daughter has autism and we had a major change in behavior. Not just bad behaviors, but self harming, her personality seemed very different and she stopped doing activities that she normally was fixated on. The behaviors were so extreme we almost hospitalized her. We pushed for medical testing and found out she had Hashmotos disease (autoimmune) and it triggered severe depression, worsened her anxiety, she was peeling the skin off from her fingers, and it caused physical outbursts that left us bruised and frazzled. She wasn’t able to tell us that there were symptoms that could have helped us like hair falling out, swollen thyroid (it was a lump on her neck), and severely dried skin (she already has skin issues but she didn’t know it was different). As soon as they put her on thyroid, depression & anxiety medication, she leveled out & we slowly got our daughter back. So we worked really hard on verbalizing pain, body awareness and practiced self-checks. (She’s high functioning.) Recently she told me her hair was falling out more than it used to – a sign we need to get her to the Dr to change her medication level. Progress is possible!!

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