The worm turns
April 25, 2009 by Jill Cornfield
Filed under Health
I know that when Aunt Julie (aka my sister) reads this, she’s going to say, “You want to WHAT? You want to inject your son with PARASITES?” Very important to read the all-cap words with just the right amount of amazement.
One day, I’m sure, they’ll have some more answers to autism’s causes and effective treatments. Right now, thought, it’s like we’re all bumping into each other in the same dark room, looking for the door to get out. Every now and then someone says, “Try the gluten-free, casein-free diet!” And you think, “Nah, that just doesn’t seem right to me.” And you’ve read from people who seem reliable and sensible to you that it’s not effective.
Then you bump into someone who says, “Helminthic therapy worked wonders for my son!” And you think, hmmm, didn’t I read something somewhere about worms being used to treat autoimmune diseases like MS and lupus? And then this turns up in your inbox (see the description for May 14), so you do a little digging and watch this video, which definitely reminds you of all the times your son has had a fever, and he acted (how to put this nicely?), well, less autistic.
Why does this unproven, unapproved, and untested therapy seem so appealing to me? (We’re not going to do it, because my favorite way to research something — quickly glance at a few web sites before moving onto items I bookmarked on eBay — indicates you have to buy worms from Thailand for thousands of dollars. THAT doesn’t make sense to me.
What does make sense is a hodgepodge of facts and figures. Not everything old is bad: look how leeches made their great comeback after being discredited for centuries. Now they’re used in microsurgery and reconstructive surgery.
Who remembers Phisohex? When I was a kid, mothers who wanted to be hypervigilant bought it and made their kids wash their hands with it. (Not my mother. She felt soap was perfectly fine.) I loved that acid green plastic bottle it came in. It smelled like the future: ultra clean, faintly plastic. Then all these reports started coming in about damage to newborn babies, who used to get bathed in it in hospitals, and Phisohex (aka hexacloraphene) was taken off the market. (It’s still available as a prescription.)
Recently I’ve heard about the low incidence of inflammatory bowel disease among children who grow up on farms and how vitamin D supplements may worsen autoimmune disease, another instance of thinking you can raise your level (when it’s low because of a disease) and then finding out this is actually counterproductive.
It would be embarrassing to admit I don’t really have a point. We’re not going to do helminthic therapy with Alex, but I wish we could. When I think of those farm kids growing up and never having Crohn’s Disease, when I think of leeches helping newly reattached limbs, it only makes me realize how very poorly understood many conditions are. (It also makes me think of Mose, Dwight Schrute’s cousin on The Office, who makes infrequent appearances and seems sort of autistic to us. If all this is true, he’s an even more improbable character, since farm children grow up healthier than city children, if they’re not exposed to pesticides or dangerous farm-equipment-related accidents.)
We are still looking for the door. We’d even settle for being nearer the exit.
you want to WHAAAAAT????
just wash him with a little phisohex–he’ll be just like new!
Sometimes you just get so damned desperate for that magic ticket that will make your child like the others, even just a little. Even just be able to follow along in the mainstream class. Even be able to think before acting out on other children. Even just be able to consider– just once– the benefit of one’s action to someone else. You listen to everything, all the wild things people have tried, and pray deep down inside that maybe one isn’t crazy.
I take it you’re in favor of finding a “cure” for autism. Good for you! I used to teach autistic kids, long ago when it was thought to be a very rare condition. I was very young but it was obvious to me that my students weren’t having a jolly old time being autistic. On the contrary, they seemed distraught and miserable most of the time, even when we weren’t beating them with barbed wire. (That’s a joke. We were very nice to our students.)
I don’t understand the folks who insist that they like their autistic kids just the way they are, thank you, and they wouldn’t want to “fix” them for the world. If I had an autistic child I would be once of those parents who mortgaged my house to buy the damn worms from Thailand. I would do anything to make my child non-autistic.
Why?
It’s not because of any shame on my part or wanting to have the smartest kid on the block. It’s because I hated to see how sad and angry my students were a lot of the time. They knew they weren’t like other people and it pissed them off.
I hope you find your magic ticket.
It’s hard to let go of the idea of the magic ticket, so when new theories and medications and therapies come along, we scrutinize and pay attention. Our children are not dying of some terminal disease but our lives are as daily compromised … our prayers are as heartfelt … their near-absence as palpable as if they are. If we had the money, I’d try those worms, as insane as that sounds.
I most certainly am! And my reason is kind of selfish. It’s just SO HARD day to have a kid who is almost impossible to communicate with. He doesn’t tell me what he’s thinking; I can’t really tell him what I’m thinking. I don’t care if he works at Burger King when he grows up – I’d be proud if he could go someplace every day and, more or less unsupervised, carry out some tasks. I’m sad to think that my clearest long-term goal for my son is for him to reach age 25 and have all his teeth. For what it’s worth, Alex doesn’t seem unhappy or angry. He is a bit oblivious of his peers – not entirely, but he doesn’t seem like a candidate for any kind of peer pressure. However, he’s only 11 (almost). We’ll see how he changes over the next few years.