An Idiot Savant Plays the Violin

My son has been doing Applied Behavioral Analysis (ABA) therapy for awhile now, and we've already begun to see an improvement. ABA therapy is a treatment for autism- and other developmental delays- that operates on the principle that you can train a person to develop an instinct they don't have already. This makes a lot of common sense. While I try to avoid the dog analogy, we can all agree that sitting still and waiting for food is not the instinct canines were born with. It becomes their instinct after a long series of rewards makes them eschew their natural instincts in favor of those more convenient for us. ABA is just applying that same principle to people.

The new thinking about my son's condition goes something like this. We are all born with a set of instincts written into our brains- we all naturally begin to walk, point to objects, mimic expressions, talk, reason, learn, mate, etc. These instincts are inborn. We know them like spiders know to build webs or hawks learn to dive for mice from hundreds of feet in the air. The instincts we come with are astounding in their complexity and range. Almost all of us have instincts that are especially developed- instincts that are more specific and distinct. Some people are just born with a sense of balance, others have brains that are geared towards language, some of us can see farther, run faster, or handle really tiny things with our fingers,  etc. Those special instincts we have that are naturally more pronounced in us than our peers are what we call talent. As everyone knows, almost everyone has one. Often, it just isn't the one we want.

When we're lucky, we have the good fortune to channel those talents into activities that bear fruit. The kid who can think fast, see things moving in a weird, specific way could be a ball player- or maybe a photographer. The little boy who just has that gift for language becomes a translator, or a computer programmer. The talents we have aren't usually specific, they can usually be bent towards a number of different activities. The ability to snap a photograph at exactly the right instant or spot a splitfinger fastball headed towards the plate are actually pretty closely related. The talent might be more or less the same, the difference is where it gets channeled. The quick-eyed kid who's thoughtful, introverted and intellectual isn't going to gravitate to baseball. Likewise the athletic, extroverted, spontaneous kid is going to be bored by photography. They have the same basic set of talents, of overdeveloped instincts, they just feel rewarded by them in different ways.

If I Could, Would I? Should I?

My son was diagnosed with autism on July 22, 2010. Since then, I have been immersed in the world of autism. Autism is becoming increasingly common, although it would be more accurate to say that it is being diagnosed more frequently. Whether the spike in autism diagnoses is the result of an anamoly, a misinterpretation of the data, or an actual epidemic hasn't concerned me much, and it still doesn't. The salient point is that autism has insinuated itself into the zeitgeist, and the "fight for the cure" that accompanies any real or imagined epidemic has begun. The puzzle ribbons that advocate "autism awareness" are proliferating, and money is changing hands with the goal of eliminating autism.



At a class for parents of autistic kids that I attended, one of the other parents bristled at the word "autistic" being used as an adjective for her child. "My son is not autistic," she said. "He has autism, but that doesn't define who he is. He's just like any other kid, it's just that a lot of things are a little harder for him. But when I look at my son, I don't see autism, I see a beautiful little boy. I hate when people look at him and only see his condition. He is a boy who happens to have autism, not an autistic." I understand what she means. I also hate that people will write my son off becuase he is autistic. It's an inevitability we'll have to deal with and all the disease ribbons in the world won't change that.



At the same time, something nagged at me about what she said. I disagreed with her and I couldn't put my finger on why until I came across the concept of "neurodiversity." My classmate saw autism as a condition that was superimposed on her son's personality. She saw autism as a parasitic entity that had infected her son at conception and for which there was no cure. The underlying assumption, though, is that there is an authentic, un-autistic personality locked way inside her son by autism and that if a Djinni appeared and offered to "cure" her son's autism, her son would emerge as a normal boy. When I think about my own son, I know in my gut that that isn't true.

Autism is a total experience, even in mild cases. It is pervasive. It affects every thought and emotion a person has. For an autistic person, there is no part of reality that isn't colored by a tendency towards asociality, towards routine, or the tendency to see patterns in place of generalities. When I try to imagine my son as a "normal" boy, I can't. If he were not autistic, he would be a completely different person. He would bear absolutely no resemblance to my boy. Curing my son's autism would erradicate the boy that I know and love. I've even grown attached to some of his autistic traits. His catlike indifference to affection has become weirdly endearing. His funny tics and blunt reactions are honest in a way you don't see in most people. I admire the purity of his interactions with the world. All two year olds have that air about them, but with my son, there is a total lack of pretense. He isn't manipulative or cloying- he's incapable of that. I don't admire his "childlike wonder"- I admire his preternaturally worldly lack of wonderment altogether. He's already figured out what it takes typical people their whole lives to learn: life isn't that big a deal, and what happens in it is kind of irrelevant.

Parenting the Bauhaus Way

When I began the adventure of raising my son, I couldn't believe how hard it was. Nothing I said got through to him. He didn't seem to be interested in what was around him, unless it upset him- and then he screamed. There was this lack of curiosity that was puzzling. I knew when my boy was born that he would be legally blind because of an inherited condition in his family tree. A lot of these things that made raising him so hard I chalked up to the difficulty of raising a boy that was legally blind.

As time went on though, it became more obviously something else. The ominous A-word began to float around in our discussions of his progress. He didn't seem to learn how to do many things, and even more disturbing was that that didn't seem to bother him much unless it meant some direct physical discomfort. He wouldn't ride a scooter. He tried, failed and abandoned it. He didn't struggle to learn anything. For many months, we all told ourselves that this was tied to his near-blindness. That began to fade when we saw him climbing six foot ladders at the playground and walking across the room when he spotted a sippy cup of juice.

There were obvious indications of his poor vision, though. He held things very close to his face to look at them and he watched TV so close up he would get spit on the screen. I would cling to those signs of his blindness for months as the explanation for why he didn't talk or really play with me, and why he seemed oblivious to what I said. All that time though, the spectre of autism lurked on the periphery of our relationship. I stayed home with him, and as the months wore on I could almost see it flitting around his room like a Ringwraith or a Dementor. An uneasiness stalked me that would not go away.

The longer he went on without talking, the stranger it seemed. The other oddities began to bother me more. He didn't want to play with me. He was constantly twitching and shaking his head and jumping in place, as though he were trying to jiggle something loose in his head. These bothered me more and more, but as the months went by and he was getting close to two years old without speaking or even responding to sign language I held out hope he'd snap out of it. There was one thing that constantly haunted me. My son would not respond to his name. For weeks and weeks I tried to see if he'd turn when I yelled it. He rarely did, and most of the time it was for some other reason.

Autism is a lot of things, but the one aspect of it that has made life the most difficult in my brief time around the condition has been the asocial tendency of many autistic people. My son has asocial tendencies, albeit far less severe than many other less fortunate autistic kids- and his social interest has improved with therapy. He began ABA therapy 6 months ago, and the difference has been nothing short of remarkable.

Still, I sometimes I feel like I'm talking to a wall. I never know how much he understands and he often has a faraway look in his eye. On some days he has a catlike indifference to affection and praise, on others he's quite sweet. Sometimes he laughs out of nowhere at a joke only he will ever understand. I have a short fuse, and I have often have to pause and take some deep breaths to avoid yelling at him for climbing on something or jumping on the bed for the millionth time that day. Sometimes I fail, and yell. It upsets me, he seems to take it in stride. It's sort of creepy to see a kid so indifferent- he seems almost jaded. At times I love that about him. Often, it makes me sad.

Raising my son felt like that anxiety dream you have where suddenly discover you have a final for a class you didn't do any reading for. It is that way for all parents, but how can you get your bearings as a father if your son sometimes doesn't even acknowledge you? My boy often has very little need for my approval. It was worse early on -he would smile when I clapped for him sometimes, but more often would just go about his business. He seemed unable to understand that people are different from plants or furniture. Often, he would use me as a sort of crude tool. He would take me by the hand and place it on a door or a cabinet. When I opened it, I was dismissed, having served my only function. He pushed people to different parts of the room if like he's rearranging the furniture. It's changing, and it isn't always the case, but often, my son seems to think of the world as a giant living room full of mannequins or dolls that yammer indistincly like the parents on Peanuts. A lot of the time, I'm just one of those dummies.