Turbee
May 5, 2009, 1:58 pm PTA very big aspect of Gauntlet is that it was written based on my own autistic son. I wanted to write the book to honor his courage and intelligence, and to show him that even in our less-than-ideal world, he too is capable of big things. For that reason, I’ve been asked time and again to describe what it’s like to live with an autistic son, and what my son in particular is like. Please consider the following blog to answer those questions…
My own Turbee (it’s actually his childhood nickname) suffers from a form of autism known as Asperger Syndrome. It took a long time to identify the proper diagnosis. He was in Grade 4 before the specialists got it right. Up to that point he had been diagnosed with an alphabet’s soup of syndromes, none of which seemed to fit particularly well. More seriously, none of the prescriptions or treatments for any one of them helped. When the doctors finally got it right, and gave us a program that started reaping rewards, it opened up a whole realm of possibilities and quirks in the boy. We entered a whole new world.
From that point on, getting to know my son was an adventure. He’s never ceased to amaze me with the way his mind works and his quirky personality. But he’s never been your usual child. Turbee has a slight speech impediment, and even as a teenager he speaks in an awkward and stilted manner. There is much inside his brain that seems to want to come out, but can’t. The level of his social interaction is extremely low, no matter what his mother and I try. This last aspect of the disorder is particularly tough on him — he is a lonely child, though even he couldn’t tell you what we could do to fix it. A very strong characteristic of autism is that the autistic brain doesn’t understand normal human interaction, or social mores. Even if Turbee is put into a situation with ten people who are ready and willing to give him every chance possible, he doesn’t have a natural understanding of how to start a conversation or even what to talk about. Even in a household with two brothers and a sister (all now teenagers), who try and include him in everything they do, he holds back. The processing of multiple voices and music at a sleepover or a party is difficult for him, so he often goes to his room, alone, losing himself in video games.
Turbee has a slight physical obsessive/compulsive condition involving the rhythmic movement of his right forearm. He can control this most of the time, but when he gets stressed or upset, or when he’s been off his meds for too long, it comes to the surface. This is another source of social awkwardness. He is on a fair number of medications, including Ritalin-type compounds, and he is on a small dosage of Paxil (which worries me no end).
There are so many amazing things about Turbee, though, that it’s difficult to recount them all. He has an astonishing memory. When he was two years old he received a little memory toy that required you to input repeated sequences of various sorts, ie red square, blue circle, orange triangle, blue square, etc. He took a few days with the toy, and then went beyond its limit, which I think was 14 or 15 items. No adult (including me) could match him.
At that point I knew I had a precocious child on my hand, but was working 80 hour weeks at the firm, and had little time to deal with it. Now I see that THAT was part of the problem. When teachers in kindergarten and grade 1 began to point out problems that existed, I ignored them, thinking that they were simply having trouble dealing with my talented son. It wasn’t until he was 7 or 8 years old that it became apparent to me that there were indeed some problems, which I initially thought were minor. At that point, though, we began seeking treatment for him.
Turbee is now 15 years of age, and is learning to deal with his autism as best he can. He is typically in the top 5% of his class, and does fabulously in physics, math, and chem. But when it comes to identifying sources of tension within Hamlet, for instance, it’s like reading a different language for him. He has a difficult time with the nuances of communication that most of us take for granted. He has difficulty with humor. I do believe that he watches Homer Simpson obsessively because he is trying to figure out what makes people laugh. But with the right support, and the right mixture of medication and education, he’s learning to cope. He has learned social interaction through remembering an ever-increasing and complex set of programmed responses, starting with “good morning,” leading to “how are you,” and finally finishing with “isn’t the weather just awful.” He now is aware of his sexuality, and I am struggling with watching him try to figure out the formulaic responses for asking a girl on a date, nevermind the far more complex things that the world will find to throw at him; this is where I see his handicap, and his loneliness, the most. I worry about him every day – I worry what he’ll deal with tomorrow, or the next day, or ten years down the line. How will he handle college? Marriage? A family of his own? And will he ever find a way to truly fit in? These thoughts are my constant companions.
But I’ve known Turbee for 16 years now. Yes, he’s got a difficult road ahead of him, just like any autistic child does. But he’s also one of the most amazing people I know, and possesses one of the most intelligent minds I’ve ever met. And he’s learning. For that reason, and because I believe in him, I can say that I do believe he’ll find a way in the world. I’m just not expecting it to be the way anyone else would take!