Monday, July 23, 2007

Even with my genetics, I somehow turned out OK

One of the first things I worried about when we first began to whisper "autism" was the idea that my genetics are largely responsible for any (and all) of Scooter's problems. In my research into hypothetical causes of autism, the role of genetics comes up repeatedly. And I can mostly discount several of the other theories. Scooter had mercury-free vaccinations. He has had one flu shot that might have had some thimerosal--but that wasn't until after some of the signs that we can pick out in retrospect. I would even dismiss the recent theory that a vitamin D deficiency during pregnancy can be tied to an increase in autism. But I have not been a consistent user of sunscreen and definitely wasn't during my pregnancy with Scooter. (I do generally use sunscreen now, but a lower SPF for days I won't be out much and I frequently don't put it on my legs so that I can get some vitamin D when I walk around.)

In the meantime, a funny thing has happened; somewhere along the way, I have come to embrace the genetic link. Let me try to articulate.

I think that a conversation I had with one of my aunts was particularly instrumental in helping me reach this point. After reading our family blog, she called to see how we were holding up and asked me during the conversation, "What does this mean in practical terms?" I told her about the therapies he's doing and how they should help him. We talked about what is "wrong" with Scooter in terms of day-to-day functioning. I said something like, "He comes at information differently than most other kids; he just thinks differently." And then we talked about how so many members of our family are "different." And it's true that so many of us don't quite fit in; we are incredibly intelligent on the whole, but somewhat eccentric and kooky. (And that's not even the mathematician side of the family.) Then I said, "But the fact of the matter is that I like the way my brain works. I like that I don't necessarily see things the same way as other people. I wouldn't want to be 'normal,' whatever that is."

Something clicked.

I almost certainly have some level of autism, most likely Asperger's. I always felt different than the other kids, knew somehow that my perspective didn't match that of my peers. Some of the social aspects of school were hell on me, and I overcame them primarily by observing and then changing my behaviors. I am OK socially now, having learned how to compensate for my deficits to the point that I don't always have to give it conscious thought.

I don't want Scooter to feel the same sense of isolation and somehow being wrong. And so the upcoming evaluation and likely diagnosis become an opportunity. An opportunity to pinpoint Scooter's strengths and weaknesses, an opportunity to discuss with professionals how we can help him play up the former and bolster the latter, an opportunity to help him recognize his unique perspective and take pride in it.

I am not naive. I don't think this is the end of the rough times or that everything will be magically resolved. But I do know that I turned out OK without any specific intervention and that Scooter has started therapy relatively early and that Trillian and I are ready to do whatever else he needs.

And in the meantime, I can't bring myself to worry too much about the little boy who sneaks the spatula from the chocolate cake he's making with Grandma and loves jumping on the bed and tells me about playing in the sandbox with his construction toys.


crazymumma said...

It's neat scary....beautiful to watch our children walk around with our mantle of difference. And what is theirs alone.

My heart sits in my throat most days...but I would not want it any different.

bubandpie said...

I love you, Mouse. I really needed to read this today.

Aliki2006 said...

What a beautiful post...while I can't see the genetic link in myself, I do see it in some of my other relatives and it explains a lot--fleshes out the picture, so to speak. I wouldn't trade in Liam's exceptional way of coming at the world for anything. But I do want the world to be an easier, less intimidating place for him.

How great too that you're able to address all this so early. I've been dealing with lots of guilt this summer about not acting on our concerns earlier--concerns that have been there since he was very small. I guess it wasn't until he entered school that the issues realyl began to kick in big time.

magicdrgn said...

My partner and I have a 2 1/2 yo son (via sperm donor) who has a speech delay and sensory processing issues. His formal evaluation is tomorrow. I had suspected even prior to having my son that I might have some autistic tendencies (probably not even to the level of Asperger's), but it has been unsettling to have my suspicions confirmed. I'd love to talk if you'd like to email me (magicdrgn at aol dot com).

Lisa b said...

I know I am not in your shoes but this is how I have always thought of autism as well. The same ideas are always in the back of my mind - that my 'weirdness' will be passed on to my kids.
I the case of J we know it is a genetic thing but that has only convinced me more and more that genetics explains more than science can quantify at this time.
Beautifully articulated pov.