Among individuals with autism, anywhere from 25% to 40% may also have a seizure disorder. Parents and other caregivers of these individuals must learn to recognize triggers for seizures, how to help during a seizure, and what to do after a seizure. Parents and caregivers must also deal with medications and complementary and alternative medications to control the seizures. It is certainly an aspect of the caregiver duties that none of us signed up for.
I (Missy) know first hand because my brother has been having seizures since the day he was born almost 33 years ago. I do not proclaim to be an expert on seizures by any means. However, I am certainly an expert on my brother’s seizures, or at least so I thought.
Recently, my brother contracted a stomach bug which resulted in massive diarrhea and a trip to the ER. The following day, he had a seizure. While he sometimes has a postictal phase, he seemed fine because he responded to questions and he was mobile. Usually, his postictal phase is brief and uncomplicated. For example, he may forget how to put on his shoes, or he may not remember where the towel goes. Sometimes, he is sleepy and prefers to lie down and rest. (For additional information on postictal phases, you may read here.) On this day, it was all different.
About 3-4 minutes immediately following the seizure, my brother walked right past our hotel room door (He has the memory of an elephant!). I called his name and asked him to stop and he continued walking. Then I realized he was in a postictal phase.
I walked ahead to get him and guide him back to our room. He immediately began screaming and physically attacking me. I grabbed my phone and called 911. My brother was engaging in behaviors we have never seen before. I grabbed a cool rag and began rubbing it on his head. The sirens became audible and I told him that help was on the way. He said, “uh oh” but continued to scream and attempt to run away. When the first responders arrived in our room, my brother was still in a postictal phase but he was beginning to settle down. Finally, after about 10 more minutes, he returned to normal.
You are probably wondering why I’m telling you this story. I’m telling you this story so that you increase your awareness of seizures and all the phases of a seizure. You realize that if I had not seen the seizure, I would not have recognized that my brother was in a postictal phase. I would have wrongly assumed he was having a fit/tantrum and all of my reactions would have been different (and potentially contra-indicative to his needs).
And you see, this happened to a dear friend about 3 months ago. She did not see her son’s seizure. When he entered the postictal phase and began attacking her, they were in a very public place. The police were called instead of paramedics. Everyone treated the individual as a criminal instead of a medical patient. He was arrested instead of being treated.
Parents and caregivers, if your loved one has a history of seizures, become the expert on your child so that you may help clinicians recognize your loved one’s unique needs. Behavior analysts and teachers, we must train our front line behavior therapists and technicians to recognize seizures so that we respond appropriately to behaviors.