Sunday, October 7, 2007

The Cure

Every few weeks I have a conversation with a friend or relative or acquaintance in which they’re telling me about an article or episode of Oprah or a news magazine segment. “Did you see that mom who cured her autistic son by cutting gluten out of his diet? It was really interesting. You should get the book.”

Unlike many parents of autistic children, I have not spent long, late nights scouring the Internet reading about treatments, cures, and interventions. This is not to say I don’t read or do some exploring on my own, but I’m a bit under-researched in comparison to the vast autism internet world that exists.

The fact that I haven’t done this is a bit surprising to me, since when I was trying to get pregnant, I spent countless hours reading about the exactitudes of fertility and after I miscarried three times, I spent even more time reading – more often than not through a blur of tears - about what might have gone wrong.

But I haven’t been seeking a cure for Ben.

And up until now, I’ve been comfortable with that. My instincts have told me that Ben’s condition is genetic. He never had the stunning and sudden regression that many parents describe. He sits on the "high functioning" end of the autism spectrum.

But as a parent, when someone suggests, even in the most veiled and subtle way, that I could change Ben or make him better by giving him a natural detoxification supplement or taking wheat and milk out of his diet, it makes me wonder, “If it’s so easy, why don’t I do it?”

Am I uncaring? Naive? Cynical? Or worse still, lazy?

Now, after what feels like a critical mass of well intentioned people mentioning these mass media reports to me, I’m finding myself spending more time doing exactly what I’ve avoided up until now: scouring the Internet, trying to understand these biomedical “cures.” Wondering if we should give it a try.

But something is holding me back.

Maybe its rhetoric like this. One newsgroup post described a doctor who “helps autistic children recover from their own personal train wreck.”

When I see Ben, I don’t see a train wreck.

I guess just don’t believe that Ben is sick. I believe that he’s different.

Maybe he is who he is, and that if we put him around people who make him feel safe and confident and accepted, he’ll develop just enough communication skills to get him through circle time and staff meetings and dinner parties, while still feeling comfortable expressing his quirks.

And I love his quirks. He expresses them, for the most part, so joyfully that I think they must be a fundamental part of him. My son is not a train wreck.

But what if I’m wrong. What if it's just the cheese sticks standing in the way of him and rewarding friendships? What if a piece of toast is causing him to freak out when his cousin touches his train set?

The thought is ridiculous to me. But at the same time unsettling, and even sometimes terrifying. I imagine Ben confronting me as an adult, “Mom, my god, why didn’t you DO something? They had RESEARCH about gluten back then. It was on OPRAH for god’s sake.”

Will my lack of intervention be our generation’s version of medical cluelessnes, like those TV ads from the 50s where doctors are extolling the health benefits of cigarettes?

My college freshman year Philosophy class is very hazy at this point, but I think it was Pascal said that you should believe in God because if you do and you’re wrong you’re basically not out much, but if you don’t and you’re wrong, you’re screwed. Is biomedical intervention like that? Believe, because it’s better than ultimately being wrong.


Another Autism Mom said...

Christa, I think exactly the same way about my son. He's adorable, healthy, and happy, not a train wreck (or "toxic") by any means.

As for the GF/CF diet, we didn't do it because my son has NO digestive problems, has no signs of chronic stomach discomfort or any kind of pain that would be a sign of food intolerance. I also tested him for all kinds of allergies and his results were all good. So there was no reason for me to put the poor guy in that very restrictive diet. If your child had chronic diarrhea and lots of food allergies than it would be a good reason to try GF/CF. It does not cure autism though.

Anonymous said...

Christa, you are a fabulous writer and the subject is so close and dear to your heart. Ben is NOT a train wreck and my husband actually works with a doctor who is autistic on the highly functional side and he is an awesome guy. Please know that you are a smart, caring mother who doesn't have all the answers...neither did our mothers and we all turned out OK...with our own little quirks.
I especially liked when you spoke about trying to get pregnant with Ben. You are fortunate & blessed to have a son who makes you smile and warms your heart and gives you tight hugs. I know that Ben will grow up to be a great man and for now, let him enjoy his childhood without any labels:-) Hugs, Zar

Laura Shapiro said...

Just found out about your blog thanks to Paul, and I had to comment on this. I've been spending a fair bit of time on the blogs of disability activists of one stripe or another, including those of people with autism. What I've gleaned from these individuals is that they like who they are, they're not interested in being "cured" or even "mainstreamed", much less in being pathologized. From what I've learned, you're absolutely doing the right thing.

sunrabbit said...

I was so touched by this post. I have found some information about sound wave treatments that are supposed to change the way the brain works, and may possible "cure" autism or related disorders. My most immediate reaction was terror. I thought about my little boy, and wondered if he had such a treatment, if his brain was changed, would he still be my sweet son as I know him? I mean, sure, I'd be glad if he were better able to socialize and make friends, or if he was less hard on himself. But what if that meant he was no longer able to read? No longer found such delight in fonts and numbers and anything else with text on it? What if he is the way he is because that's just HIM, not because he's defective? Just like you, I don't see my son as a trainwreck. I appreciate so much your insights.