Once more the battle is raging between two sectors in the Autism community and we can all blame a hospital in Seattle for throwing the gauntlet down…
The Seattle Children’s Research Institute had an ad posted on city buses that read “Let’s wipe out cancer, diabetes and autism in his lifetime” next to a picture of an adorable four or five year-old boy. Outrage was immediately sparked and the ads were taken down. One side of the Autism community says “Autism is not a disease that needs to be cured,” while the other side says, in the voice of Susan Moffitt of AutismKey.com, “Parents of low functioning, self-harming children would do anything to cure their children of autism, while at the high functioning end of the spectrum there is more concern for civil rights and equal opportunity.”
I wish Ms. Moffitt hadn’t been so very specific about who among us would want their child “cured” because the particular sector she referred to includes me and I disagree with her. Strongly disagree with her. Vigorously and strongly disagree with her as in “na-ah, you didn’t just speak for me!” disagree with her.
J’s behavioral issues are no secret. I’ve extensively documented the frustrations and difficulties of the Great Crisis of 2010 and its subsequent evolution into where we are at now. J has worked very hard to let us in, but we’ve also knocked on the door quite persistently. There have been moments when I’ve wanted to drill a hole to look at what’s going on in his head, but would J be J if he wasn’t the way he is??? Cure him? Change him???
This is the last picture taken of J BEFORE he had his sudden, overnight change, losing all eye contact and vocabulary:
That was November of 1996, when J was not yet two years old. When I took this picture, I didn’t know that our lives would be completely different the next morning when he woke up. If I could go back to this moment, would I keep him up all night, or sit next to his bed to see if I could STOP what was about to happen???
Not even in hindsight can I answer this question. It’s as loaded a question as can be (kinda up there with “do these pants make me look fat?) and I’d be dishonest no matter what I say. I don’t think there are enough words that I could properly combine and thread and weave together to give an honest answer that doesn’t contradict itself twenty times over…
I can answer from today. I can answer from the J I know. I remember the J in that photo, and I recognize him in more recent photos like this one:
As you can see, there’s more hair on him. There’s definitely a significant amount of pounds added to his frame. But that’s J. My J. Now J. The other kid went to bed one night after I read him the Little Golden Book of Disney’s The Sorcerer’s Apprentice and, like the book said, “MUTATIS!”
Would I cure J? And people have asked. Of course they have. People want to know and no answer is correct. If I say no, they immediately ask me if I’ve ever stopped to think what the Autism does to J. (Have I EVER stopped to think how J feels? Really? People don’t think I’ve done this?) People have also asked if I’ve ever taken the Risperidone to see how it makes J feel. The answer to that is NO, I wouldn’t take a medication prescribed for someone else because I was taught that one shouldn’t do that and I’ve modeled this behavior for my children all their lives. The most I can do is observe J closely and pay attention to how he metabolizes and processes whatever we give him, but that’s true of food too.
If I say “yes, I would cure J in a flash,” I’m shooting myself in the foot. I’m admitting that I would change this person into what could be considered a “better” version of him. I don’t think there’s a “better” version of J. I think there’s J. I wouldn’t change TGG either. I’d like to smack him upside the head when he’s obstinate, sasses back, thinks he’s got it all figured out and treats me like I’m a dinosaur, but I wouldn’t change him.
This is the thing that I argue in favor of: what we’re all trying to modify is the effect of the Autism, not the person who is autistic. Any time I wish the Autism would go away it isn’t because J is happy or playful or learning, it is because I get frustrated that I’m not getting through to him. So, basically (at least in my case,) what I’m wishing for is for the labor-intensive aspects of J’s situation to be gone…I’m wishing for less work…I’m wishing for more sleep…I’m wishing for something other in my Amazon.com cart instead of flash cards, and other materials that might help J grow his vocabulary and learn more skills. I’m wishing for more ME time. In other words, I’m wishing to be what every 48 year-old woman envisions when she’s on the brink of having an empty nest: less involved in the day-to-day of her children’s lives and more in tune with all the things that would make old age exciting for ME.
I understand what the hospital meant with the ad, and I think it was done quite clumsily. No, J is not SICK, and no, J doesn’t need to be CURED. But it WOULD be lovely if Autism disappeared off the deck of cards that’s being shuffled and dealt out there. However, those of us who are already in the boat, even if the boat has a hole and we’re bailing, wouldn’t dream of getting rid of the boat because it would change the whole ocean and we kinda like the ocean and all that’s in it…
That’s a stupid comparison, I know. But I think you get what I mean…in Life of Pi, isn’t Richard Parker what keeps Pi alive? And isn’t Richard Parker what most scares Pi about himself?
No, I wouldn’t “cure” J, but I would rather that Autism becomes a rare occurrence until it disappears and becomes the thing of memory and myth…