Monday, April 02, 2012

World Autism Awareness Day 2012

I have no idea if anyone is still using the above logo/icon/whatever, but I like it, so I am. I'd like to think there's a certain appropriateness to that.

Minions has visited this day from time to time, apparently last in 2009, the commemoration's first anniversary. I haven't chosen to post on April 2 in 3 years. I'm fairly sure that this has not made any of you less aware of autism. It certainly hasn't done so to me. There's some twinge of guilt here, some internal nag that I should've been marking this day each and every year. And there's a recognition of reality, too. Because you're not any less aware of autism, or how it affects me and my family.

The usual suspects will spout the usual idiocy on this day. There'll be a lot of feces-throwing, and a lot of earnest labelling, and a lot of self-pity. Shit, I do all that every day, I don't need a special day for it, and neither does Bam-Bam, who is, as you probably remember, Minions' local person with autism.

There are some truths about autism that are pretty absolute. It isn't a condition or a disease as much as a spectrum of observed--and, it is hypothesized, related--behaviors that can vary wildly from one person to another. It is not caused by vaccines. It is not caused by toxins. It is not related to diet, though some children have comorbid conditions related to diet, or may display some autism-like behaviors as a result of gastrointestinal issues. It is most likely genetic in origin. These are all things that have pretty solid scientific backing. The truth is that there's a little of the spectrum in many of us, and probably some way that each of us can find to connect to that.

It's probably best to let people who are passionate about autism believe as they choose. Parents should select the treatments they think appropriate for their children (within certain limitations--for instance, chelating children to remove heavy metals is a treatment that probably amounts to child abuse). You're not going to talk an antivaccination lunatic out of their position using calm reason or science or anything else. You can't talk to Jenny McCarthy, period. What can be done is to insist that research money not be thrown down black holes of wackaloon alternative research or into self-serving charities that believe that there is a one-size-fits-all "cure." Many high-functioning persons on the autism spectrum detest the notion of a "cure" in the first place. Others, like my friend Swami and her son Max (see here)...not so much.

And then there's Bam-Bam, my stepson, who lights up my life in a way no other person can. That doesn't mean I love my wife, or Bam-Bam's brother Databoy, or anyone else, any less. But Bam-Bam and I connect. I wrote this once, about a month before the first WAAD. Here's the money quote:
I accept Bam-Bam for himself. He is a happy kid who lights up when he sees me, who wants me to play with him and hug him and wrestle with him and bathe him and put him to bed and give him pizza or chips or cheeseburger and wake him up in the morning (when he doesn't do that on his own at 4 AM) and put him on the bus. This kid loves me and I love him. He is a sweet and stunningly smart kid who happens to be different, and who happens to have some trouble communicating. And by different, I don't mean "sick" or "disordered" or "damaged." I mean different. Bam-Bam views things through his own lens, and who the hell doesn't? His lens just isn't shaped the same way as mine.
Nothing there has changed in the four years since I wrote it. Bam-Bam is now 11, and in middle school. The school program is a little more focused on occupational skills--counting and sorting and packaging and the like--and on interacting in the community; his class goes on community outings three times a week, rather than just once. The high school program is even more focused on life and occupational skills, and we're fortunate that we live in a jurisdiction that will, essentially, allow him to extend high school by 3 years without prejudice. That's 9 more years of school for him. Who the fuck knows how he'll be able to grow?

I don't know what the future holds for Bam-Bam, and like any parent, I'm scared shitless about it. I'm so scared I can't begin to process it. So, like him, I just keep on, doing the things that can be done. Unlike him, I press a little harder--usually not enough to piss him off, because that doesn't do anybody any good. But he presses too, and he'll usually answer a challenge when its posed.

So please give a thought to Bam-Bam, and to my friend Swami and her Max, and to my friend Kimmah and her Sam, and to millions of other parents and kids I don't know and can't name, every one doing the things they have to do, day by day, often one minute or hour at a time. Just today, or today and every day, or whatever thought you can spare, when you can spare it. Speaking for me and Ilse, there are parents of ASD children who are in far more stressful straits than we are; there are people whose uncertain and scary future is next week, not next year or next decade. Of course I'm scared for me and mine, but I think of them too, especially those whose childrens' behavior is less comprehensible, more threatening, more self-endangering than Bam-Bam's.

And to Bam-Bam, my little buddy...well, words don't cover it, can't and won't. But I'll be there when you wake up. Sleep well, my son.


Sasha said...

I like this logo ...

Anonymous said...

Wow. Just wow!

Jim H.