Updated: Mar 11, 2019
According to the Epilepsy Foundation,
* Seizures are the most common neurological complication in Autism Spectrum Disorder
* 1/3 of the Autism spectrum also have epilepsy
For Nolan, it started with the blank staring spells as though he was in a whole different world for about 5-10 seconds. Yes, children with Autism tend to situationally present as "being in their own world" from time to time, but this was different. To add to this, he had been having many sleepless nights. As any mother would, I thought it would be best to inform his pediatric neurologist about these "strange episodes".
The neurologist at the children's hospital in our area suggested a 24-48 hour EEG evaluation. As a parent of a non-typical neurodevelopmental child, of course I was worried about this. How was I going to explain the procedure to Nolan? What if he wouldn't keep the leads on? Would he be okay being away from home?
I started off by telling Nolan that we were going on a "sleepover" for a night where he could pretend that he was a robot that Spider-man was trying to help. Spider-man could always see the robot, so the robot wires always had to be visible and on in order for Spider-man to help save him. I know, sounds a little crazy, right? I came up with the Marvel scenario after researching what an overnight EEG would look like...the leads glued/stuck on the head of the patient, as well as a visible camera always watching. I proceeded to tell him, if he pulled off the "robot wires," Spider-man would have a difficult time saving the robot. Oh, the things we tell our kids to distract and preoccupy their thoughts.
Once he was admitted and taken up to the room, Nolan didn't much care about Spider-man saving the robot. He was scared, as was expected. The child care team did an amazing job showing him how the leads were going to be put on using PECS, prior to application. They also provided us with some soothing chewy toys, which Nolan loves. Not to mention the overabundance of Pixar movie options (his favorite) and video game consoles. He was in 7th heaven at this point.
Throughout the test, I didn't notice any visible staring spells or anything out of the ordinary. The next day, after a few hours of sleep, we woke up to the neurologist standing at the bedside. She said, "I have some good news for you. Nolan's brain waves were normal for a child on the ASD spectrum during the day," which was good to hear. Then she stated that the EEG recorded abnormal waves during the nighttime recording. Se said there were several instances of "spikes" while he was sleeping. Huh? How could that be good news?
The diagnosis was benign rolandic epilepsy. Why was this good news? If Nolan was going to be diagnosed with a from of epilepsy, this was the one to be diagnosed. Now this is where the good news REALLY comes in...
We were told that in most cases, this common form of epilepsy would resolve on its own by the time Nolan was a teenager.
The epileptic "spikes" would most likely just vanish!
"Benign" was the keyword for me. The visible "spikes" seen on the EEG does not cause major physical problems to the brain; however, if the seizures get worse, they can cause setbacks developmentally. Just the thought of Nolan being setback developmentally...we have worked so hard to get where we are now with the appropriate schooling and therapy. A setback just isn't an option!
The neurologist also stated that some children with this particular type of seizure syndrome have difficulty with reading verbal communication and attention.
Difficulty with verbal learning or attention? Is there a connection with autism? These 2 questions immediately poured out of my mouth. "Yes," she said. "There is a connection."
According to a study done by the Autism Community in Action (TACA),
Seizures are the most prevalent neurological disorder associated with ASD.
While 1-2% of children in the general population develop epilepsy, the prevalence of epilepsy in ASD is much higher from 5%-38%
The doctor advised me to get some cognitive baseline testing done on Nolan. That way, if worse come to worse, all parties involved will know if any setbacks arise. I was also advised to use a simple baby monitor to observe him while he is sleeping, in case a bigger seizure occurs. Although unlikely, the doctor prescribed a medication that would stop a long lasting seizure, if one was to occur.
Epilepsy was, and still is a mystery to me, but the connection between it and autism makes logical sense. I know more today than I did yesterday, but I now begin my quest for more factual information about epileptic episodes.