September 15th, 2007 by Jemaleddin Cole

There’s a hypothetical question that crops up every once in a while in online autism communities, and it’s this:

“We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?”

Strangely, this question comes up a lot more online than it does in “the real world,” mostly because as hypotheticals go, it’s pretty far out. For instance, while we don’t know much about what causes autism, but we know quite a bit about its physical manifestation in the brains of autistics. One of these is that autistics have a different structure to their brain than other people. Instead of a spiderweb of interconnected neurons, autistics seem to have columns of brain tissue with more linear connections.

The reason this is important is that your brain is you. The structure of your brain determines not only the way you think, but the kind of thinking you can do. These differences in structure are a part of why it can be so difficult for autistics to learn certain kinds of information, and also why they can be so good at other kinds of thoughts.

So when you talk about a “cure” for autism, you’re talking about something that would require re-wiring the structure of the brain, taking it apart and putting it back together. And that’s impossible. Not just difficult - impossible. Have you seen the pictures of the enormous spiderweb in Texas? Imagine a spiderweb a hundred times larger and denser, and then imagine trying to use a pair of tweezers to reconnect every strand to turn it into the Taj Mahal.

Worse yet, all of our memories are wrapped up in the way that our neurons are connected, so even if you could rearrange everything, you’d be destroying every memory, every behavior, every function of the brain in question. So rearranging the brain would be like giving somebody a complete lobotomy - like turning them into an infant.

But even if you could get past all of the technical hurdles that make a cure impossible, you have to ask yourself, “what would a cure mean?” It would mean changing the fundamental identity of the person in question. The way that a person thinks defines who she is. So part of the “cure” question is, “Do you want to trade your autistic child for a different child?”

Would I trade Jared’s problems for somebody else’s? Would I give up his strengths in order to get rid of his weaknesses? If Jared didn’t scream and cry when things didn’t go his way, would he still be completely unwilling to lie to me? If Jared was better at making friends, would he still amaze me with his sense of humor? If he didn’t wake me up in the middle of the night, would he still walk everywhere holding my hand telling me how much fun we were having?

So needless to say, I’m not looking for some impossible cure. I like my child and wouldn’t trade him for somebody else. Yes he can be difficult, but to be perfectly honest, an autistic boy is no more trouble and worry than a teenage girl. And in two months, I’ll have one of each.

2 Responses to “The Big Question”

1. So what’s interesting to me is that I never really thought of this perspective before - At least, not until you put it the way you did one day whilst I visited your dungeon. I mean, honestly, what I have learned from reading what I read and watching what I watch and listening to folks who have children with autism (besides you & Kellie) is that it’s so difficult that they’d give anything for a cure. I read that there’s something genetically malfunctioning, and research continues to find a ‘cure’.
   I think you really put it best and at least opened my eyes to what you mean - I wouldn’t want to genetically alter either of our children to make them different than what they are, and who we love.
   I guess the question that remains is, would someone make the change before the baby was born, if they could? Is Autism something that a parent would choose to live without, if they could alter genetics within the womb, or before?
   The answer may be simple to you or me, but surely there are people out there who would exercise the option.

   — CanadiensFan September 16th, 2007 at 7:44 pm #

2. Another good question, but the science seems to indicate that whatever is going on starts sometime in utero - if there were a genetic test, the only way to prevent yourself from giving birth to an autistic child would be to stop yourself from giving birth, if you know what I mean. This is why members of the Down syndrome community fought so hard against the blood test that a bunch of the big autism groups helped fund. While having a child with autism or Down syndrome can be quite a challenge, the question becomes, do people with different ways of thinking and different levels of cognition deserve to live? Do they live a positive life that contributes to society and our understanding of the human condition, and is their unique perspective something to be studied and appreciated? Or should we wipe them out?

   I think it’s pretty clear (if only from the incredibly slanted way that I phrased that question) how I feel about the issue.

   I’ve known a number of people with Down syndrome, and I know one person with autism really well, and I think those relationships have made me a better person. My dad’s church up in Michigan had three mentally retarded guys that attended regularly, and I have to tell you that they were among the nicest, sweetest, most warm and helpful people I’ve ever known. My great uncle Jay, who is mentally retarded, is one of the finest examples of a man who has spent his life loving and caring for other people and looking back, I treasure the time I spent with him when I was younger.

   And of course, Jared is easily the most spectacular little boy on the planet, more full of insight, excitement and surprises than any other boy I’ve ever met. I think everyone who meets him, especially the kids in his class, is enriched and enlightened by his unique personality, and amazed by his incredible progress on the path to becoming a man of unlimited potential.

   But I might be the teensiest bit biased. :-)

   Oh, and the “research” being done to find a “cure” is being done by some pretty shady characters. I’d encourage anybody who really wants to get into this stuff to check out some of the sites at The Autism Hub, especially Left Brain/Right Brain, Autism Vox and super-especially Amanda’s Ballast Existenz. Amanda has opened the eyes of so many people, and is proving that people who would have been locked away or written off as unreachable years ago can really make this world a richer and more exciting place. And she, along with her cohorts (ha ha, inside joke) are really getting the word out about what autism really is.

   — Jemaleddin September 16th, 2007 at 9:44 pm #