Anemone's Research Emporium

A Cure for Autism?

Anemone Cerridwen
January 22, 2009

I have many problems with the idea of "curing" autism, as do many other autistic adults. Here's what I think.

Fixing What's Broken

First of all, who even thinks a cure is possible? Autism isn't a disease you can catch or cure, like a cold or cancer. It's a difference in the way the brain is organized. And by the time autism can be detected, it's hard wired into the brain the way left-handedness and homosexuality are. And by the time something is hard wired into the brain, it's too late.

Now, don't get me wrong. Autism is much harder to deal with than either left-handedness or homosexuality. As far as I know, the only problem "inherent" in homosexuality is having to deal with prejudice - homosexuality itself appears to be no more than a difference. With left-handedness, there may be awkwardness in a right-handed world, and a higher accident rate using equipment designed for right-handed people. But it's possible that better designed equipment could eliminate this risk. With autism, however, there are major disadvantages, just as there are for blindness and deafness. So it makes sense that if it could be fixed, perhaps it should be.

However, remember the blind man "Virgil" in Oliver Sacks' An Anthropologist on Mars. Virgil was blind from early childhood, he had his sight restored as an adult, and it completely overwhelmed his brain, which did not know how to process all this new information. He liked it better being blind, since he already knew how to do "blind", and he seemed happier when he lost his sight again. Reorganizing the autistic brain in someone old enough to be diagnosed with autism may be similarly chaotic and counterproductive, assuming it's even possible in the first place.

Also, when people talk about "treating" or "curing" autism in people who already have it, far too often they are talking about making us more conventional, in order to solve the problems they have with us, rather than helping us with the things we have problems with. Who cares if we're any good at social chit chat? It's not the be-all and end-all, and lots of other people aren't much good at it either. Far more important is to be able to communicate effectively, in some way or other, about the things that matter to us, so we can interact effectively with the world instead of being swept about helplessly by it.

Plus, it should be noted that, often, we grow out of much of this "problem" behaviour as a normal part of growing up, just as children without autism improve in their behaviour as their brains grow more organized and competent. All children develop, so why try to force it?

By all means, help us with coping strategies, but please make sure you're helping us with our problems, rather than asking us to help you with yours. We have enough on our plates being autistic as it is, without also having to be therapists to the rest of the poor bewildered world.

Prenatal Testing

Let me state up front that I am pro-choice. I do not believe in forcing any woman to remain pregnant if she can't handle it in any way and if an abortion is a safe alternative. No matter how difficult abortion is, unwanted pregnancy is likely to be much worse.

So, taking that into account, how do I feel about prenatal testing for autism?

Bwahahahahahahaha! Hahahahahaha! Hahahahaha! Bwahahahahahahaha! Haha! Ha!

Whew, I needed that.

I don't think it's possible to test effectively for autism, and that it's a waste of money to try. Autism is most likely a combination of multiple genes (it seems to be a polygenetic trait) and multiple environmental factors. It's probably far too complex to detect the genes by testing, and even if you could, how would you detect how these genes will interact with the environment when the relevant environment may still be in the future? And I don't just mean vaccines. The biggest environmental monster of all is shifting social role expectations. One generation, you'd get by somehow. The next, *poof*, you're toast.

If you could demonstrate that autism is present in the embryo by the end of the first month or two, and if you could then detect it effectively without harming the embryo, then you could screen for it, and parents could decide what they wanted to do. But I doubt it's ever going to be that easy. It's not like Down's Syndrome, which is to my knowledge a single gene (with no environmental effect on development) that can be screened for effectively.

What is more likely to happen with screening for specific genes or for fetal testosterone (which is what they are talking about right now), is that you may detect people who are more environmentally sensitive, more creative, more androgynous, more left-handed or more of whatever else runs in families with autism or is associated with high fetal testosterone (which may or may not be a marker of autism). These traits may (or may not) be associated with autism, they may (or may not) be more common in autistic individuals, but they are not harmful in themselves. Eliminating all genes associated with autism is like using a machine gun instead of a mousetrap to catch that mouse. It's overkill.

Besides, it's not the genes that are the problem, it's how they get shuffled before the cards are dealt. Some of us get better hands than others - some of us end up autistic, while others end up as well-known left wing lawyer-politicians, or whatever. Like those with manic depression, autistic people may not be productive as a group, but sometimes our relatives are very productive. I know mine are.

As long as the family thrives, evolution doesn't care about individual outcomes. And it's up to us how we treat the ones who get dealt bad hands. Are they cripples and outcasts who deserve to die in poverty, or are they the ones who stay home and do the dishes (or keep the dog company) while their more economically endowed kinfolk go out and rake in the cash?

What I'm saying is, I don't think it's the genes that are the problem, I think it's how they are sometimes expressed. Some researchers are even comparing genes to words in a sentence, in that genes don't have an absolute meaning: what they do depends on the genes on either side. So going after the genes is not the solution. Accept that valuable genes sometimes get mangled in the wash, and that with the good comes the bad. It's just the way life is.

In addition, preventing autistic children from being born won't eliminate suffering. It's not necessary in order to prevent suffering, since a lot of the suffering we experience is due to a bad fit with our environment, rather than the autism per se. The differences we grow up with can actually seem pretty normal and natural to us. And while we do have problems communicating, we do get better at it over time, and communicating with people can be frustrating for anyone, so it's not all or nothing. In addition, preventing us from being born is not sufficient to end suffering. Anyone can suffer if their environment is dysfunctional enough. Are we going to abort every child, so that no child will suffer growing up? If you truly want to prevent suffering, try improving parenting practices even more than has already been done in the last few decades. And spread the current improvements around some more.

And all this focus on preventing future autistics from coming into existence in the first place takes money and time and energy away from helping those of us that already exist. As it is, there is almost nothing in the way of support available for autistic adults. Maybe they figure if they ignore us long enough, we'll all die off and they won't have to figure out how to accommodate us at all.

Support

"So what kind of supports do you need, anyway?", you may be asking. "Heck if I know" is my answer. No one's really studied that issue, so all I can really say is fewer fluorescent lights and more soundproofing, please. And big loud shiny malls and arcades for all the noisy people to go to, so I can enjoy the woods in peace and quiet. But I'm hardly alone in that one, now, am I?

I think what we really need right now is lots of funding (maybe even 25%?) dedicated to studying autism in adults: What are we really like? What are the long term effects (both positive and negative) of the treatments we've gone through so far, and do any of them really make any difference? (Yes, this is relevant.) And what kind of support do we need in order to be able to participate in society? The more we learn about autistic adults, the more we know what to do, and what not to do, about autism in kids.