Peeling the Onion, Part 5: Desperation and the Autism Parent

– Posted in: Autism -- The Handbook, Autism Recovery, Newt, Newt's Story, Personal Insanity

This is an ongoing series about my 8-year-old son, Newt, who was diagnosed with high-functioning autism when he was three. Since that time, he’s tested off the spectrum. We think some of this is why. . .

Okay, I’m going to try to make this quick because I’ve sort of been feeling like crap. Which kind of leads to today’s topic: desperation.

I tend to be very vocal about all of the expensive treatments that are getting thrown around when it comes to helping kids with autism. My main beef with all of them is that I’m more than a little convinced that we’re all going to look back on this time and see what snake oil salesmen so many of these people actually were.

The thing is, I feel like “autism” wasn’t our first rodeo. With me having a chronic pain condition (fibromyalgia and atypical facial pain) that no one really knows anything about or how to fix, we’ve basically done it all (and when I say “we,” I mean my husband, Tenzin, and me because he basically has to go through all of this, too). What’s pathetic is that even though we’ve been able to go for semi-long stretches where we’ve managed to “hold off” trying anything new, we’re like junkies — we always seem to go back for more. After almost two decades of trying to alleviate my pain, one thing we’ve discovered is that there are people out there who believe with all of their hearts and souls that they can help. They may even care about you as a person. But at the end of the day, they will also want your money.

For some reason, we were able to “stay off the drugs” a little better when it came to autism treatments. But we know. It’s hard. You’re kid is messed up. You want to help him any way you can. And every “expert” is telling you — the uninformed — exactly what you’re supposed to do. And it is literally the most sinking feeling you’ve ever had in your life. Because there are no do-overs. If only you could try two different paths and get a do-over. . .

And desperation is a powerful force. It makes a person do things they never thought they’d do. Spend money, time, and energy they didn’t think they had. Bend their minds in ways they never thought they would. Move their moral compasses in directions they never thought they’d go. In the best of times, it helps you figure out what’s important. In the worst, it breaks you into pieces.

Every time my kids have an experience where they “feel weird” about someone or some situation, I encourage them to go with that feeling. Stay away from the guy who creeps you out. He’s more than likely creepy. The reason I do this is, if it weren’t for us going with our gut feelings, we would have given in to desperation when we got Newt’s diagnosis and panicked. We would have ignored everything deep down inside that told us our son wasn’t the kid they were telling us he was. We would have tortured him with 40 hours of Applied Behavioral Analysis a week, put ourselves in debt, and made someone else a whole lot of money.

By the way, I know that ABA works for some people. And I’ll explain myself next time when I (hopefully) feel less like crap. But for now, I’ll just end with this — please keep in mind that there is a business end to every treatment. If you must press the “buy now” button for the gluten-free food, weighted blanket, supplement package, therapy swing, prism glasses, iPad app, computer program, or specialized learning program, then please push it with the commitment that you’ll receive your package with a skeptic’s eye.

Because as I’m sure you already know, they’re on the other end with the solid commitment to empty your wallet.

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