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.