.
They’ll teach you it in grad school, initial RBT training, and you’ll even find a corresponding BACB Ethical Code for credentialed BCBAs. But you’ll get lost in your work and the strive to work as hard as possible for your client, and you’ll forget. It won’t even come to the forefront of your mind- until it’s right in front of you.
Undiagnosed, comorbid medical conditions are, unfortunately, a significant component of an autism diagnosis in many circumstances. For instance, 46-84% of children with autism experience gastrointestinal (GI) dysregulation (Al-Beltagi, 2021). And while you may have this information in the back of your mind, you’ll be so focused on implementing the program to reduce the behavior that it won’t really cross your mind until symptoms are hugely prevalent. At least that’s how it was for me. In hindsight (of course), the warning signs were there the whole time.
It was my very first case as an RBT and I was paired with a newly credentialed BCBA who still largely needed support from her supervisor. We joked that we were going to learn this together. From the very beginning, our client’s family expressed concern with his very poor sleep habits and thought he might be haunted by some type of Brazilian spirit/ghost. They explained that more and more frequently, their son would stop what he was doing and stare into the distance, unable to speak or move.
Suddenly, he’d jump up and hysterically cry and scream, clutching to his mom until his knuckles were white. Definitely concerning, but the call to their pediatrician yielded no results, other than suggesting the family begin keeping a log of all the incidents, including what happened before and after these events occurred. They were also suggested to see a specialist, however, the specialist that took their insurance was over 2 hours away and had a month-long waiting list. So, until we had more data, nobody could address this behavior.
We kept logs and my BCBA and I also held telehealth sessions via Zoom with our supervisor so she could also witness the behavior. The events didn’t seem to follow any patterns. I witnessed the behavior 4 times one morning and then zero for the next 4 days. We saw the family struggling- nobody could sleep, and the parents were distraught with how nobody could help their son.
It was heartbreaking seeing him so terrified when he came out of one of these events. There was nothing to be done for him except hold him tight after an instance occurred and try to let him relax after he came back. This was, of course, disturbing our session and planned programs, so eventually, all our time became devoted to watching and trying to find patterns to the unexplained behavior. Because his pediatrician didn’t seem concerned and we had nothing else to go with, we kept on with the notion that the events were behavioral in nature, potentially escape or attention maintained, though we couldn’t find a cause for them.
I arrived at session one morning to find my client asleep on the couch, with his parents talking quietly over coffee at the table. They both jumped up immediately upon my entrance and began to explain their previous night’s events. They had to take their son to the emergency room, as he had an event that lasted much longer than previous ones and they were fearful that something was truly wrong.
After many tests and head scans, someone finally picked up the cause of these events. Their son, our client, was epileptic. The events were seizures and he was diagnosed with Epilepsy, a common comorbid symptom to autism (Al-Beltagi, 2021). Once this had been identified, the family stopped ABA services shortly after so they could focus on learning and managing his epilepsy and new medication.
The BCBA and I still talk about what a crazy first case that was for both of us. We knew something else had to be going on, but unfortunately for the family, no other resources were available to them to be able to identify a medical condition. To this day, it truly bothers me that due to their language barriers, the family were pushed aside and ignored when they were begging for help for their son.
I was in the apartment several times, listening to the mother struggle to communicate her needs and those of her son, only to be told to call back in another week or two. It was so incredibly sad to see this whole situation take place and then their son to suffer seizure after seizure, nobody knowing what was going on or how to help.
Al-Beltagi states at the beginning of his research paper, “medical comorbidities have a significant impact on the child’s behavior and development. Early identification and treatment of these comorbidities will help to improve the child’s ability to learn and improve his or her circumstances and those of his or her family (2021)”.
This entire experience was a great one to have, despite the time it took to get our client diagnosed and treated for his seizures. My BCBA and I discussed, at length, the importance of getting clients medically cleared before starting ABA services and how treating a medical condition as something behavioral is detrimental to all involved. As an aspiring, hopeful future BCBA, I know I learned several valuable lessons from working with this client that will carry with me throughout my career.
Recognize the signs of Epilepsy in children!
- Staring or “zoning out”
- Stiffening of the body’s torso and/or limbs
- Jerky, sudden movements of limbs
- Trouble breathing, gasps for air, wheezing, clutching chest, and/or coughing
- Loss of breathing or consciousness
- loss of bladder or bowel control
- falling suddenly
- appearing confused
- not responsive to words, phrases, or other environmental stimuli
- rapid nodding of the head
- rapid blinking of the eyes
- blue lips
- tiredness, heavy fatigue following the event
Post written by Ashley Lavoie. If you wish to get in touch with her reach out Nevada Autism Center, 7730 West Sahara Avenue #115, Las Vegas, NV 89117, (702) 660-2005, https://nevadaautism.com
