I have to wonder. Is he making progress or staying the same? Sometimes, I outright wonder whether he is getting worse. Other times, I feel like all this therapy is doing nothing more than masking reality.
If a behavior slows down, it’s like a bit of stuffing pushed deep inside a pillow. You can’t see it as much anymore but it’s still there. And as it’s pushed down where you cannot see it, if you look on the other side, another, different lump protrudes out. And then I wonder: are the therapies bringing about the changes or is my son doing that through his own understanding over time?
Often, it seems like we trade in an old behavior for a new one. Initially, there were meltdowns every time we went to the mall. Meltdowns were traded for obsessive behavior in riding the escalators and/or elevators. Once we cut back on that, it was obsession to visit a specific store. Then, look at a specific item in a specific store…
It’s a bit like an odd kind of growth and change – completely untraditional. As he matures, he seems to understand that there are certain things that are not welcomed. He knows there are limits on certain activities. And he struggles to keep me and others happy by working through his overwhelming desire to obsess on something.
I don’t know that this is fair to him. Yes, life is unfair, but should it have to be at such a young age? Of course he has to learn that he cannot do something just because he has a desire to do something. We all learn that. But for him? It’s different. It’s harder because of the way his brain works.
You know, if I was reading my own post before I had any understanding of autism, I would really probably say I was full of it. Anyone can learn to control his or her behaviors. We all have weaknesses in the form of obsession whether they be focuses on food, drugs, cigarettes, or even exercise. Keeping ourselves from obsessing on any of these things is a form of deprivation and requires hard work and will power. I wonder if avoiding these obsessive-like behaviors are like that for my son or something else entirely.
One of the strongest and most prevalent of my son’s autistic behaviors is echolalia. He repeats lines from TV, from his own vocabulary, from books and from video games or apps. He will take these “pre-recorded” lines and will recite them over and over in lieu of actual communicative speech. Often he will be mumbling, scripting, reciting lines from a TV show in low tones to himself. He will then turn those lines into questions and recite the question repeatedly.
Eventually, the mumbly echolalia goes “underground”. Stuffed back into the pillow. Other problems surface. Belching. Yelling (more like loud yelping noises). Crossing his legs like he had to pee really bad. Now, it’s making a blow-fish face (holding big breath of air in cheeks) and making farting noises with his mouth. And still, he is engaged daily in echolalia.
The other behaviors? Some of them are simply being a little boy (farty mouth). Some of it could be stimming autistic behavior (he could be doing the farty mouth to get the sensory input to his mouth where he seems to have hyposensitivity – he can’t feel the area around his mouth very well). Which is what and why would tell me what is happening with my son’s behavior. Of course, I have no answers.
But one thing that has stuck with me since our neurology appointment last week was that, within all of it – that dominant feature known as echolalia can be a form of seizure activity. Maybe I’m the only mom who did not recognize this, but there it is. I’ve read plenty over the last year and a half, since my son’s diagnosis, about echolalia as a symptom of autism. I have never before read anything about a link between echolalia and seizure activity. This was all new to me.
Since last week, I found this article in Neurology, the medical journal, that said this:
“Echolalia has been observed in association with left frontal or temporal lesions where purposeful speech or comprehension output were impaired but where neural pathways involved in repetition were preserved… Unlike purposeful repetition, echolalic speech is an unintentional reflex…
Echolalia–palilalia may be produced during a seizure, and this unique phenomenon should be considered a type of reflex epilepsy.”
Echolalia may not be seizure related in many instances but there is the link between some absence seizures and echolalia. For me, the echolalia had always just been a symptom of the autism. My son has a hyper-focus on whatever has captured his interest.
This can be a gift. He has been able to read and spell since he was about 2 years old. Repeating, for me, has always been the way to learn and memorize. To now put the echolalia in a medical context of “seizure” activity casts an entirely different light on it.
All at once, it is scary and relieving. It is scary because it is part of the unknown with my son. Part that will become more known after his EEG is read. The part that is relieving is that, even though it is not common, if it is seizure-related, the echolalia can be medically treated once confirmed by testing.
So, getting a diagnosis of “autism” which – when received- was, I thought, “the end”, is, in reality, only the beginning. From, what I gathered from both the initial appointment and in the Neurology Journal article, there are medical treatments that can help control seizure-related echolalia, if that is what the little guy has.
So the medical testing will give a scientific basis from which we may be able to treat one of the hardest parts of his autism for us – the echolalia. Effective treatment for that part of his disability would really be our little miracle. And wouldn’t that be nice…