Monday, July 24, 2006

Cure Borgdom Now

While I'm sometimes troubled by the cure autism at any cost advocates, lately, I also feel disturbed by some persons with autism who presume to intuit the beliefs regarding cure of the entire spectrum population. Although I will fight to my last breath for every spectrum member's right to state an individual opinion about "curing autism", I will also argue with equal conviction that one person on the spectrum cannot possibly represent the thoughts and feelings of another.

If one could take the DSM IV criteria for autism and split it down the middle, they'd end up with a reasonable diagnostic sketch of my boys. One child's autistic features represents the other's about as much as the a blood blister represents a melanoma.

Jamie got all the cool stuff autism can bring. While his early years were very difficult for him, I can safely say that Jamie could pose as the early intervention poster child. While he's a persistent boy, and obsessive to the point where he will not let go of a problem until it is solved, he's got a few savant skills to push him over the hump when need be. He's learned to use these bits of genius to impress his teachers and friends when he needs an assist in the social skills department.

Jamie's ability to think in three dimensions and crack any code he cares to allows him to beat the pants off of most anyone who dares to challenge him at video games. Because Jamie is a visual thinker, he's also is an amazing artist--as long as he's drawing video game characters!

Granted, I doubt Jamie will ever aspire to be Mr. Party Animal, even though girls have been vying vehemently for his affections since he was three-years old. (Jamie's a born stud-muffin. But I don't think that's listed in the DSM IV. )

Jamie knows he has autism, and it clearly doesn't trouble him much. If you ask him, he'll tell you, "so what, big deal, when's dinner?" If I were to ask Jamie if it would be ok to just up and cure him of his autism, I'm pretty sure you'd be met with a resounding "no way, Jose!" At least not before he unlocks the last character in Super Smash Brothers Melee.

I support Jamie in his choice to vote for "no cure." Jamie clearly enjoys being Jamie. Jamie with Autism.

Sadly, our family has also experienced the devastating flip side to Jamie's autism experience. If Jamie got the better half of the DSM IV, then his big brother, David, got the half that makes us wonder sometimes what we, or our beautiful child, ever did to warrant his having been committed to Hell on Earth.

As David's mother, I want you to know that I love this child with a passion few can comprehend given the often tremendous difficulties involved in keeping David's behavior stable. But I will also be the first to tell you that it has to suck to be David.

You can see by the photo I've posted above this entry, that David got the severe sensory disruptions and painful hyper-sensitivities commonly associated with a diagnosis of severe autism. David must wear noise protection headphones nearly all the time as even the sound of his own breathing brings him unbearable agony.

Clothes hurt David, too. He will never wear holes into the knees of a favorite pair of blue jeans, for their woven texture causes him to writhe in discomfort. He cannot wear button down shirts, because the sensation of the button attachments pressing into his skin incite him to epic spells of head-banging.

Smells hurt David, too. If a person wearing perfume enters my home, my son will sniff everyone in the house to find the offendor. Then he will show them right to the door. Should they refuse to take his hint, David will begin slamming himself into the walls with a fury severe enough to leave gaping holes in the drywall.

Digesting his food hurts David. David has suffered from severe, acidic diarrhea nearly every day of his life, and having a bowel movement often sends him into such extreme spasms that he can scarcely catch his breath for shrieking in misery. Eating is difficult as most food textures and tastes cause him to gag.

School hurts David. Until I could convince my son's school district to educate my son in a dimly lit, sound protected room, David could not manage to focus for one moment. He could not stop hurting himself or others. Exposure to cavernous hallways and stark cafeterias with their miserable acoustics and harsh lighting is tantamount to torture for David.

Exposure to florescent lights has been, through careful data taking by a certified behavior analyst, proven to incite my son into rages severe enough to cause him to jump through windows. Don't believe me? See that scar in the picture above? The one on my son's elbow? He jumped through a window (not on my watch, mind you). That incident required skin grafts. We thought the wound would never close.

David is doing some better these days---specifically since I fired the arrogant and uncaring behaviorists, who refused to acknowledge that pain can be a very real antecedent to outbursts.

You see, when the lights are dim, and the meds are right, and the clothing doesn't hurt, the seizures let up, and the unrelenting pain of his autism brings him abates a bit--my little boy can be present for long enough to tell me how much it sucks to have Autism. The kinds of things he tells me and asks me when he is present enough to use his letterboard independently are the stuff of every mother's night terrors.

"Why does autism hurt so much?"

"Why do autistic kids have to stay home?"

"Why are you afraid of me?"

"Why did God make me like this?"

"I wish I could talk."

"Am I sick?"

"Help me. It hurts bad so bad."

"Autism sucks."

"Help me."

I have a hard time hanging on to my composure when one of my son's higher functioning peers presumes to speak for him. This child will suffer immeasurably for every day of his life. He will seldom be able to summon the words to tell us where and how it hurts. Even if he could tell us just how it feels, there is likely little we could do to help him.

David should be allowed to have a cure if he wants one,without fear of exile from his peer community.

And even as I fight for Jamie's right to refuse a cure, should one come along, I will fight with equal conviction for David's right to advocate for curing autism now.

My children are not Borgs. I don't believe they want to be assimilated.

2 comments:

Thomas said...

AMEN!!!

I have also had problems with the "Autism Liberation Front" as they call themselves. And we all know who they are. They see only one side of several delicate issues and are blind to all other points of view, no matter how valid they may be.

They do have many valid points themselves, however. But the way in which they choose to let those thoughts be known is both immature and irresponsible. What they are doing now is pretty much just supporting each other, and I suppose this is a good thing. But they are out to change the world, and if they want to do that, they need to GROW UP and work within the system to create change that will benefit ALL people with autism.

Personally, I believe they could be an incredible force of good for the entire autism community if they would get their acts together and rethink the approach they are taking to things. But as long as that hate and bitterness within them remains, they sadly will get nowhere.

That makes me very sad, because they deserve better than what they are doing to themselves.

Thomas

Anonymous said...

Good post! I know many people with autism who act as positive role models both for themselves and their community. In my opinion, these persons with autism do more to expand positive support for self advocacy than their more...radical....counterparts.