Peeling the Onion, Part 2 — Autism Therapies that Don’t Work

So last week I started a series called Peeling the Onion. I’m hoping it’ll actually force me to start writing about how we helped our son, Newt, with his high-functioning autism (I’ve started this project several times and I always screw it up). Why “peeling the onion?” It seems like an appropriate description for a kid like Newt. He’s always been a package that we’ve had to slowly unwrap in order to find the next surprise. And just like an onion, when you start opening it, it’ll make you cry your eyes out. Fortunately it ends up making everything that was ordinary taste a whole lot better.

It would be nice if an autism diagnosis came as a neatly wrapped package. When you find out your kid has autism and you go to the computer and peel off that first layer, it scares the shit out of you. Everybody has an opinion. Or a “cure.” Or an opinion about how it shouldn’t be cured. There are therapies, diets, metal extractions, and exorcisms. There’s the “1 in 110” or “1 in 38” or whatever new crap-ass statistic from Iceland that someone’s come up with. And then there’s autism awareness — the days, the months, the walks, the stickers, the websites. Because if there’s one thing we love in this country, it’s “being aware.”

I probably sound a little cynical. But that’s only because I get very frustrated with the autism industry. And make no mistake — it is an industry. There’s a ton of money being made off of people who’ve been scared into believing that their kids need gluten-free diets, therapeutic jumping lessons, or someone coming to their house for 40 hours a week to make the child give certain answers in exchange for M&M’s.

And yes. All of these things make kids “better.” I hear it all the time. But here’s the thing. Remember the old anecdote about the woman in labor and the husband who’s told to go boil water? Sure, it’s good to have some hot water to sterilize stuff. But really, you’re just giving the husband something to do during a stressful situation when he feels helpless. When you find out your kid is “autistic,” you feel helpless. You want to do everything you can to make things better. And don’t get me wrong — there are a lot of really great things you can do. BUT. . . you’ll also end up boiling some water.

I know there are people who’ll swear up and down that changing their kid’s diet or taking him to occupational therapy (OT) or putting him in Applied Behavioral Analysis (ABA) changed everything. But here’s my theory. If you’re spending your entire life running around to different supermarkets to buy [insert gluten, milk, egg, take-your-pick]-free food, spending boatloads of money, and cooking everything from scratch, you basically have a new full-time job as a specialty foods chef. And if you’re going to OT sessions, buying equipment, and turning your basement into a sensory processing disorder (SPD) gym, you’ve basically made a hell of an investment. And if you’re living your life around 40 hours of ABA therapy a week and going into thousands of dollars of debt because of it, then you’ve bought the whole enchalada.

And if you’re putting in all this time, all this work, and all this money, you’re going to see some changes, damn it. But my question is, how would that same kid have done without those things? I’m going to throw it out there and say, if you did what we did, then pretty close to the same. The problem is, of course, there’s no way to test my theory. It’s the same reason why no one really knows what to do with pregnant women (what are they going to say, “Yes, let’s try no bed rest with this one and see what happens”?).

But because no one can really test whether or not this stuff actually works, it’s so easy to scare people into using it. It’s a snake oil salesman’s paradise. All they need to say is, “Oh, but look at the improvement,” and “If you don’t do it — and do it early — the consequences could be devastating,” and “Just imagine how guilty you’ll feel if you don’t do it and then he doesn’t get any better.”

But then they always have their out. Because if it doesn’t work, they’ll just say, “If you’ve met one autistic child, you’ve met one autistic child. Every case is different. Some are more severe. And not everything works for everyone.”

So, yes, all of these therapies will most likely “work.” Your high-functioning kid will most likely turn out “better.” But most of these therapies will just be distractions from the stuff you could’ve been doing by yourself the whole time.

My guess is that in most of the “high-functioning” cases that they’re diagnosing all over kingdom come, the improvement would’ve happened anyway. Because — wait for it — the kids aren’t actually autistic (gasp). And they just need a little more time and a little more help getting up to speed and through the world.

And that’s the kicker to all of this — these kids still need a little more time and a little more help getting up to speed and through the world. And that takes work. Okay, a lot of work. But it doesn’t take a diet or an exercise regiment or 40 hours a week of therapy. Unfortunately, it takes us (sucks, I know).

So over the next hundred or so weeks, I’ll do my best to explain exactly how much sucky work it took to help our kid through this. Take it for what it’s worth. Because as we all know, there are alternatives.

And there’s always the option to go boil water.