Why Is A Cure For Autism So Horrible And What’s Wrong With a Balanced Approach?on August 7, 2012 at 1:57 pm
There’s a scene in X-Men Last Stand where one of the “evil” mutants is about to kill one of the scientists that developed a “cure” for mutants. Terrified, the scientist says, “We were just trying to help you!” to which the mutant replies “Do I look like I need help?” and then he kills her.
That two sentence exchange pissed me off to no end. I’ve been reading comics pretty much my entire life and I understand that the whole “mutants are discriminated against” thing is a metaphor for the bigotry that minorities suffer on a regular basis. The idea of “curing” someone of being, for instance, black or gay is offensive so the “evil” mutant has every right to be outraged. There’s a problem, though, with that premise, there is nothing intrinsically negative about being black or gay (or both) while there can be something intrinsically bad about being a mutant. What if your mutant power is to smell like a skunk? What if all you do is ooze radioactive slime? What if your “power” is something that makes life unbearable? The mutant that claimed he doesn’t need help looked perfectly normal and could easily pass as a regular human. How nice for him.
What does this have to do with autism? There is a group called “Autism Speaks” that is regularly lambasted for advocating for a cure to autism. They’re also targeted because of their fund-raising practices which is a legitimate conversation to have but I’m only interested in the push back they receive over their stance on curing autism. I have had readers complain that they don’t need to be cured and the very idea is offensive. Autism is a part of who they are, dammit! The other night, I watched two men with autism on The Big Picture make the same claim but one of them went even further; he described a musical genius that couldn’t control his bowels as an adult and that he, himself, had a photographic memory. Why in the world would they want to be cured?
Well how fucking nice for them.
I was so angry I actually started to curse at the TV, something I rarely do. Why would they want a cure? OK, how about this? Let’s take away the musical genius’ musical talent? Now you just have an adult that can’t control his bowels. Still want that autism? Let’s take away that photographic memory and the ability to interact well enough to tape an interview? Still sound like a good deal, buddy? Let’s throw in lifelong incontinence and violent outbursts, too. Still feel so outraged about someone looking for that cure?
Contrary to popular belief, savant abilities manifest in a very small number of people with autism. To use that as a reason to defend autism as a good thing is, frankly, disgusting. I take my son to speech therapy and while I’m there, I see kids much worse off than my own. I see one child, 11 years old, that has never made eye contact once in the year I’ve known him. He hardly speaks and his mother tells me he just reached a first grade reading level. It seems unlikely he will ever progress to the point where he can take care of himself. Another kid, about 13 or so, can speak but he can only parrot what others say over and over. He gets angry and can’t calm down. He has a strange rash on one arm that I couldn’t figure out until yesterday. I found out that he bites himself. Hard. Hard enough to leave a scar. Neither of them have displayed a savant ability.
But why in the world would they want to be cured?
There most likely will never be a cure for an autistic adult and perhaps not even for autistic children but to identify and correct autism prenatally? How is that not something we should strive for? Will we lose savants? Yes. Is that enough of a reason to condemn others to a lifetime of unnecessary hardship? Never. If the gentleman with the photographic memory still thinks so, I invite him to tell a few of the women I know that the stress they have to live through daily for their entire lives is totally worth it because he got a gift with his mild autism. I’m sure he’ll remember the ass-kicking he’ll receive with perfect clarity.
And then there are the parents of autistic children. My son has very mild autism. It’s possible he will develop complications later like bi-polar, anxiety and other personality disorders, but for now, we have it easy relative to most of the parents my wife and I know. In one group we belong to, we see parents with multiple children that have for more severe symptoms and have been dealing with it for far more years than we have. Do you know what they never, EVER, say? “Thank God my child has autism! What a blessing!” They say “I love my child with autism!” and usually follow it with “Fuck autism and fuck everything about it!” I don’t think there is a one of them that, if offered a pill that would make their child neurotypical, wouldn’t snatch it like a glass of water in a desert.
But why in the world would they want their children to be cured?
Let’s be clear, I am not suggesting we should divert all our meager resources (autism research is still criminally underfunded) to finding a cure. I’m told that this a problem that has afflicted the autism community for decades. One side refuses to countenance a cure and the other thinks only about it. There is far too much that can be done in the meantime to help alleviate some of the worst symptoms to ignore those avenues. From therapies to special diets to drug regimes to a combination of all or none, every autistic person is different and will respond differently, there is no magic bullet. Even if a prenatal cure was invented tomorrow, that does nothing for the tens of millions of autistic children and adults currently living their lives with varying degrees of difficulty. They need those intermediate treatments and we need to continue to refine and improve them. Striving for a cure is a laudable goal but not at the expense of everything else. That would be just as cruel as denouncing a possible cure for the benefit of those fortunate few that receive the blessing of a savant ability along with the drawbacks of autism.