Wednesday, November 20, 2013

A Cure

It's been rolling around in my brain lately...the idea of "curing" autism. Obviously, the events of the past week have brought it to the surface. Sometimes it can look like cure vs. no cure, but I don't see it that way. I see it more as, why do we want a cure? How do we go about finding a cure? What message do we want to send to society when looking for a cure?

To be completely honest, there are parts of my children I love that I know are due to them being autistic. Parts I would never, ever want to strip away. K's intense love for animals. B's literal mind. I mean, the conversations I have with my just-turned-7 year old are something I would never want to lose. K leaning into me, head buried in my hair because it feels good to her, is not something I want to go away.

There is, of course, the anxiety. The times it is difficult to communicate. The reactions of others to my children's behaviors. Those things? Yes, I wish I could wave a magic wand and make them non-issues. B's Epilepsy, his GI issues, though maybe not directly related, are things I wish I could cure. But I don't have a desire for them to be typical.  I'd be losing something very precious to me if did...my children as they are now. At their core. Their personalities, shaped by a different neurology, sure, but not one that's inherently bad.

What's bad is how autistic individual are treated. How they can be looked upon as unintelligent creatures, because they can't sit still for a test, or sit quietly when instructed. How we look at scores on evaluation after evaluation, and think that's the sum of our kids. Their worth, measured out in IQ points, or academic success, or social progress. And we can say that isn't how we measure their worth, but when we wish to cure everything, what we are saying is they would be worth more if they were like everyone else.

I think autism can be much more than just a different way of thinking. I respect individuals who choose a neurodiverse label for themselves (as I will embrace how my children choose to see autism in their lives), but I won't make a generalization that places all brands of autism in the same box. That's not my place.

However, I want us to be careful when we talk about wanting a cure, and understand what that really means. It means the child you have now disappearing. Maybe just a little, but maybe a lot. Maybe you are OK with that, and that's your choice, but it's not mine. Not anymore, anyway.

So, I don't think the discussion, this argument, is cure vs. no cure. I think it's about deciding how we see our kids, what we are willing to lose, and how we are willing to portray our children to uncover said cure. It's a complicated issue, in my mind. Not cut and dry. Not one that merits saying, just give me a magic pill, because it's all or nothing.

I want my children to be happy. Free of physical pain. Fulfilled in their lives, whatever that means to them, not me. I don't want them paraded out as burdens to our family, or mistakes within the gene pool.

I always want the focus to be on the positives. How I've become a better person because of my kids. How I want to mitigate the anxiety and medical issues, not because I want different children, but because everyone deserves to live a happy, comfortable life. A life where they are respected and cared for, and not seen as the scourge of the earth. Does that sound harsh? Maybe. Is it what a lot of people believe about autism because of the message certain organizations send? Yes. If you don't think that's true, you are fooling yourself. One only needs to read the comment section of any given article in the mainstream media to know it is true.

I suppose I do want a cure, in a way, but a different one than a lot of folks. It's a complicated issue, my friends, and one that deserves a lot of thought. I just ask myself, how do I want my children to view themselves? That's the light that leads my way.

2 comments:

  1. For me, even if a cure existed, I wouldn't give it to my son. We enjoy him just the way he is, even with all the extra work and issues. But I wouldn't hold it against anyone for wanting a cure, but its not for us.

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    1. I really *can* understand wanting a cure, because I used to want one, too. I just wish the way to that cure was through love, and not spreading fear. Who knows..wishful thinking, I'm sure.

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