Sunday, June 10, 2012

My Baby Flaps His Hands

The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV. Diagnostic Criteria for 299.00 Autistic Disorder:
(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)

1. If your patterns of interest are abnormal in their intensity and focus, this does not mean you have a mental disorder. This means you are sane. This means you are alive, and you are free. Much more alive and free than most people.

2. No one but yourself can ever possibly judge whether your routines and rituals are nonfunctional. Maybe your closest loved ones have some insight. No diagnostic and statistical manual created for the convenience of bureaucrats ever can.

3. Sharky flaps his hands.

Sharky does not have a mental disorder. His mentality is very ordered. 

Sharky does not have autism. Autism doesn't even exist.

Sharky fits the criteria for autism, and if Sharky needs extra help at school, or help with the development of his speech, or help understanding how to make his body do what his mind wants it to do in a variety of typical life situations, he needs to have autism. He needs to have a mental disorder characterized by abnormality, inflexible adherence to nonfunctional routines and rituals, and hand flapping. Because if he doesn't, people aren't allowed to help him.

Sharky flaps his hands.

Many years ago a Doctor and leading expert on autism met Sharky. This doctor is a good man and brilliant physician who has dedicated his life to helping children with autism, and as far as I can tell he has succeeded many many times in achieving the goal of this dedication.

He told us to do whatever we can to discourage Sharky's hand flapping. He said it reinforced autistic patterns in the mind, and would help to hardwire the brain circuitry in ways that encouraged abnormal intensity and focus, inflexible adherence, etc. Hand flapping, he in essence said, is a nonfunctional routine.It might even be an anti-functional routine.

I obeyed for a moment. The next time I was with Sharky, he started to flap his hands, a joyful and exuberant act he undertakes when witnessing something beautiful, amazing, and exciting to him. He bounced up and down at the knees, his mouth agape, both hands flapping at his sides as if he fully anticipated he'd fly away at any moment.

I said to him, "Sharky, stop flapping your hands."

He looked at me, bewildered, and said, "But dad, I'm just excited."

That was the quick end to my obedience.

An unmitigated expression of joy when witnessing something beautiful, amazing, and exciting is not a nonfunctional routine. We humans engage in a lot of nonfunctional routines every day, like going to jobs we hate, having empty exchanges with the people in our lives, surfing the internet to read things we have no interest in, watching TV shows that deaden our souls... But hand flapping in response to truly being tuned in to something? That sounds very functional to me. That sounds like a gift.

Grunya Sukhareva in the 1920s, and Hans Aspberger in the 1940s, conducted research largely independent of one another and came to develop similar concepts about their child subjects. And their combined work created the original idea of what autism was. And to this date definitions of what autism is derive from their work. In Aspberger's words, these boys afflicted with autistic psychopathy suffered from "a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements"

If these are the traits that form the foundation of what we believe to be autism, I believe my son Sharky might be the anti-autist. He stands upside down on the opposite pole of the earth from this.

But he is non-traditional. He doesn't fit in with the tinker toy constructs of our world. And for people like that, we've got a long list of labels. People who don't fit into convenient and accepted boxes can still get accepted into the culture if they accept a label of the exceptions to the rules. We've got a book with thousands and thousands of these labels. They call it the DSM IV.

So Sharky, my baby, let's you and me play a fun game. Just for now, let's play a game. Let's turn out the lights, and drape a sheet over our heads, and play a game of make believe. Let's make believe there's something called autism, and let's make believe it's a mental disorder. And let's make believe you have it! There are a whole lot of people out there who love you so much and want to help you, and some of them aren't allowed to unless we pretend you have this make believe thing.

And it's OK for us to pretend, because it's all just a game. And it isn't our lie, it's theirs. And you and I, all we're doing is finding a way to live with their lie together. And one day, we won't have to play this game anymore. Sound OK to you?

And also, while we're hiding here under this sheet in the dark, you can flap your hands all you want to.