In Their Own Words – Carolina in My Mind
This guest post is by Scott LeRette who writes about his son Austin, who has autism, in his blog www.austintistic.blogspot.com – which he has used to finish his book “Austintistic- Moments In Time.” Austin, aside from having autism, has faced open-heart surgery and suffers from a rare bone disease that has left him with dozens of breaks. His goal is to raise awareness for autism in an informative and entertaining way, sharing “moments” that are both hilarious and gut-wrenching. You can follow “Austintistic” on Facebook and Twitter.
His eyes roll up in his head, just a touch, followed by the softest of smiles. He then looks down in peace. Not the quiet of one in reflection, but a quiet of the sleeping tired soul. Teleported to a place and time I’m sure I could never comprehend or feel.
His head snaps up as he stares at me. Again, the little tell-tale smile. Just a small tic of the lips, enough to tell me that Austin is checking out, shutting down. He never convulses or is racked with contortions on the ground in the throws of a grand-mal seizure. No. Austin simply and quietly lets go. Petit Mal.
And then comes sleep. A sleep I could only wish for. Among the so many things about autism I don’t understand, seizures and what they consist of for our son is such a mystery. They look so painless and simple, yet they have an obvious toll on him. Whether we get him from school or he is out playing in the yard; the physical affect is both obvious and powerful. He will sleep though the afternoon clear through to the next morning.
Austin has a handful of these a month and we are thankful that his teachers, friends and family who have a pretty good idea when they occur, what they look like, how they present.
Why does he have these seizures? Who knows? That is just one more thing that makes this crazy worldwide phenomenon of autism such an often-times frustrating thing. We do know this: There are many things about our son that we will never began to understand and comprehend. What makes this ever more complex is the fact that the experts, clinicians and thought leaders aren’t that much further ahead of us. Sure, there are great leaps and bounds with technology and therapy, but the fact remains that we have a very long way to go. Awareness?
Why do children with autism do the things they do? Verbal outbursts, physical gyrations, repetitions and movements, obsessions, compulsions and rituals – can we really say, “Oh yeah, she did this because of xyz.”
I see it this way – Austin’s brain, like yours and mine, is made up of billions of cells, neurons, synapses, connections and parts. A massive collection of microscopic proportions only the finest of neurological plumbers can begin to understand. I stress the word BEGIN. Steven Pinker, a very fine author regarding the brain leads me to many of the new thoughts I have about understanding this organism. You have heard the saying, “I have forgotten more than you will ever know” or “He has more sense in the tip of his pinky…” Pinker confirms for me that the only thing we know about the brain is that the more we know the more we realize how so very much we DONT know about it. In fact, should we or can we really, truly think we will ever figure out precisely how the brain works? One final thought from this fine author – he describes the brain in an analogy something along the lines of a car motor or even a computer. One part like a distributor cap or a faulty line of computer code can bring the entire motor to a screeching halt or the computer crashing down. He stresses – one minute piece can bring it all to a stop.
I heard once that even the smartest of smart only utilize a fraction of their brain capacity- single digit percentages. So what is going on with the other 90% of the gray matter up to anyway? More to not know. See a pattern here?
As we have watched Austin grow up, I have become more and more acutely aware of the things he says and does. Why did he say that or what made him do this? It has become somewhat of a fascination for me because, No, I may not get it figured out, but it helps me get a better feel and understand of what makes Austin tick.
I want to share with you a few things to highlight some of what I have described above and a few more thoughts that shed light or at least help us see IT better. The whys, whats, hows and huhs.
In the scope of my somewhat limited wisdom I can condense my clinical (layman’s) knowledge down to this: we don’t know, can’t know, aren’t supposed to know and will never know, much of what we don’t currently understand. I will share this showing you three unique observations.
1. Austin sees, feels and tastes things in a unique and personal way, totally unto himself. I have only recently started to understand this. Some of these observations were confirmed recently when Teresa showed me something she found on a fellow Twitterer’s page. The post on this page was something along the lines of “Sensory Overload Stimulation.” It had an attached YouTube video showing a person with ASD’s perception of a cartoon clip and how they saw, heard and processed it and then described it.
Volume fluctuating from soft to blaring loud. Fuzzy lines and edges with images skipping and colliding. There was much more, but it so reminds me of Austin and the way he talks to us in describing an event or just how he is doing during a trivial thing.
Austin will stay in his room, oftentimes for hours. He spends this time arranging and rearranging his books, CDs, DVDs and toys – all while his TV is at MAX level volume. He says he likes it that way because he knows for sure its on and he’s not alone. But then you take it to another scenario – Moonlight Bowling. Loud, shiny, crowded and flashing disco balls. This has been the classic place for and we have seen a few seizures from times just like this. Is it a combination of the things that triggers it all? I think the multiple stimuli is certainly playing into the equation that makes the timing perfect for one to happen.
2. Austin is so very typical of the average teenage boy – he loves video games, music, movies and TV. What and how he approaches these things can be a very different matter. I have watched Austin read the game manual of an XBox game many times, but if you watch closely you can see more precisely what he is doing. He reads and rereads the credits, liner pages and warnings notes. He is fascinated by the copyright, trademark and disclaimers of the particular game. He will then ask me about them and tell me the TM(not sure what it stands for) means its their game. They made it so we have to buy it from them. Interesting. What kid reads these things? Uh, zero of them. Most kids don’t even look at a game instruction booklet. Never. “Why did they make this game? When did they make it? Who created it? How did they create it?”
Why is Austin asking these far out questions? Most kids could give a flip about any of this, but for Austin, he wants to know. He wants to know something. What does he want or why is he asking these questions?
3. Austin will try to tell us something (common occurrence) when he is overly excited, animated and intent. You know he wants to tell us something, explain something cool, but the more eager and intent he is, the more we don’t understand what he is explaining or asking. And the more he tries, he gets frustrated, as do we in return. We have no earthly idea what he is saying.
We get to the point sometimes that we are annoyed or angry, I admit. But the more we don’t understand him, the more he pushes forward. It can be a vicious cycle.
Reception. Processing. Translation. These three words are what I believe get tweaked in our son’s brain. Somewhere on the path, a wire is crossed, a pipe is clogged or a piston’s not firing, causing a whole host of things to change. Change.
There is a final point to be made here and it pertains to number three, the last example I gave you. This I think really is profound so I want you to remember and think about what I will describe.
After Austin has one of those times where WE fail to recognize and understand what he is saying, a peculiar thing may happen. It may be after a week, a month or even a year goes by, but these moments are most memorable and not all uncommon. Someone else may say or do something. It may be a simply random comment from a friend or a stranger. It could be in person, on a billboard or off of a TV show. Teresa will look at me and say, “Oh my. Did you hear that?” Something happened which triggers our memory of what Austin was trying to unsuccessfully explain to us and after seeing something that was somewhat similar is seen in another context, it makes total sense.
We had gotten a bit annoyed, angry or just brushed off what he was saying as being silly, whatever. In reality, the way HE saw it and then translated it was something beyond OUR own understanding. He knew what he wanted us to know and hear but his brain just translated it in a fashion that was Greek to us. You with me? What he was trying to tell us was right.
Sometimes it was a complex and detailed description of an event or subject and we did not give him more time and interest than we maybe should have. But, but we are learning and that is important (this is called AWARENESS). How Auz sees things may never be like the average bear, but then again, who wants to be average. Right Auz?
P.S. – Why the title? Cool state, Auz was born there and its a great song. Listen to it sometime, think of Austin and smile. Have a great day.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.