As a young child Turbee had a kind and peaceful disposition. He had a prodigious memory, but kept mostly to himself. As the months and years went by, a curious mix of problems began to manifest themselves, and began to over-shadow his life. I remember when, at the age of 7 or 8, he went with me and his older brother to a rock concert-some teen band or other. It was a typical affair. Loud, lots of lights and explosions on stage, a sold out arena full of pre-teens and their long suffering parents. A few minutes into the show he started screaming, which, initially I thought was an appropriate response. I mean, if U2 came to town I’d probably scream. But he kept it up, non stop, for a good 10 minutes before I thought it best to remove him from the scene. He even screamed outside the venue, and it took me another 5 minutes to get him good and settled down.
I’ve often thought about that, and I know now that it was the only means that he had left to him to mute the incredible sensory overloads that are the hallmark of any concert. He couldn’t go to his room; he couldn’t shut out the light and sound. Looking back on it, it was a typical autistic response. One of the hallmarks of the condition is that, for some reason, the brain can not focus or isolate one sensory thread from another. There is no modulation, no priority of incoming sensory information, as a result of which, at least in Turbee’s case, the senses literally overloaded.
It explained one category of issues. When he was young he typically would have tantrums in big, noisy venues, such as grocery stores, sporting events, and even parties or assemblies at his school. Typical group meetings, where there is more than one individual speaking, or more than one conversation taking place, are intolerable to him. He would literally try and crawl inside his sweater, head, feet and all, to escape this.
Turbee’s early childhood was full of curious incidents like that, most of which I initially ascribed to eccentricity, but in due course was labeled by his treating doctors as ADHD. Ritalin was prescribed, and things seemed to improve somewhat. In grade school, Turbee showed flashes of a strong intellect and an absolutely remarkable memory, but those strengths were diminished by significant behavioral problems. He would not follow class rules, he would say inappropriate things at inappropriate times, and was often disruptive and anti-social. Ritalin fixed most of that, and, as a result, I felt that the ADHD diagnosis was appropriate. His marks went from mostly F’s to mostly A’s
One characteristic that did consistently show throughout was a quirky, eccentric sense of humor. I recall one incident, in either grade 1 or kindergarten, where he, during lunch hour, removed all of the contents from his teacher’s large bottom desk drawer, and, being hyper-mobile in most joints, stuffed himself inside. His co-conspirators left the drawer open an inch or two for air. There was the predictable “OK, children, where is Turbee?” from the teacher, and a number of giggling kids said, “Mrs. Smith, you should check your desk drawers”. Disbelievingly, she opened the bottom one and there he was, big grin on his face, saying, “Good afternoon Mrs. Smith.” The ensuing shriek was loud enough to bring teachers from most other areas of the school to the room of Mrs Smith, where it apparently became a bit of a problem to extricate Turbee from the drawer.
While the initial diagnosis of ADHD and prescription of medication seemed appropriate to me, there were, nevertheless, ongoing issues. His ability to interact with others appeared to be markedly impaired. He had obsessive/compulsive tendencies, both physical and psychological. The structures that he built out of lego blocks had to be symmetrical. Asymmetry drove him nuts. He had a rhythmic motion of his right fore arm. The more fatigued he became, the more stressed he became, the more pronounced this would become. He would also make spitting noises. I remember watching him on the school yard when he was in grade 2 or 3, where he was by himself, pacing restlessly back and forth, forearm in motion, thinking that I definitely did not have the full picture. This was more than ADHD.
While he seemed aloof and anti-social, he felt terribly alone. I caught him once, in his room, crying. “What’s the problem?” I asked. “I don’t have any friends, dad. None at all,” was the response. It’s the sort of thing that brings any parent to despair. I am sure that many parents of autistic children have sat at that particular pit of emotion, hopelessly trying new recipes to solve the problem.
There is such irony in this. He lives in a big, busy house, with 3 siblings, with constant events, sleep-overs, get-togethers, video parties, with various people constantly parading through. They all know of Turbee’s condition, and try everything to include him, and he wants to be included, but somehow, can’t.
The parameters of the problem keep changing, because he’s growing up. He’s a teenager now, and for non-autistic people social interaction can be skewed in those years. For Turbee, it’s yet another dimension of complexity. Various therapies have been applied, with mixed success. A teaching assistant has been assigned to him (the government doesn’t pay for that), and different cocktails of medication have been prescribed. The issues almost appear under control, and something else manifests itself, and needs to be dealt with. For me it has been a difficult journey.
One of the positive things for me, in writing “Gauntlet”, and with the PR that goes along with publication, is that I have learned a great deal more about autism than I otherwise would have. Through the attendances at conferences, and through societies such as the ASA, my understanding of this syndrome is deepening.
It seems, however, that our knowledge of the autistic spectrum is marginal, at best. We do not have a good, fundamental understanding of the pathology of autism. To what extent is it genetic? Why is it more prevalent in males than in females? What, if any, are the environmental factors that contribute to it? Most importantly, how do we, as parents, as a society, as an autistic person, deal with it.
It is because of these uncertainties, and because of the need for a clearer, in depth understanding of ASD, because of unclear pharmacological and dietary and a host of other issues, that 20% of the royalties from the sale of “Gauntlet” will go towards autism research.
Buy the book. We’re at Amazon.com and at www.RichardAaron.com.
