Peeling the Onion, Part 3: Get of the Autism Comfort Cocoon

– Posted in: Autism -- The Handbook, Autism Recovery, Newt, Newt's Story, Parenting, 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. . .

One of the first things you hear about autistic children is that they’re “inflexible.” There are stories upon horror stories about epic meltdowns over a button that went un-pushed or a cup that was the wrong color or a toy train that got moved.

Autistic kids are just like any other kids — they want what they want when they want it. Unfortunately, it’s to the Nth degree. When we were deep in the trenches with Newt, I had a hard time keeping my mouth shut when people complained about their “difficult” or “high spirited” children. Because come on. Did they wanna come over to my house?

The thing is, whether you decide that your kid is “difficult” or “autistic” or whatever, the goals are still the same — raising a person who is capable of independently and confidently making their way through life. Hopefully with a big dash of compassion thrown in there. And let’s face it — part of being able to get through the world without going completely bonkers is. . . flexibility.

Because the end goal is really this: you’ll never (okay maybe you will) see a guy in a business suit at a nice restaurant saying he can’t drink out of a certain glass because it’s the wrong shape. Sure he might send his steak back five times because it’s cooked the wrong way. But no one would think of that guy as autistic. They’d just think he was an asshole. It’s just not practical in grown-up world for a person to expect to have things happen the same way all the time.

I hear all the time about schedules and routines and consistency with autistic kids. While this will make life calmer, quieter, and less messy, it won’t help. It will softly and securely cocoon your child in his current state.

But he doesn’t need a cocoon. He needs you to bust him out. He needs you to slowly but surely add chaos, disruption, and disorganization to his world. Because he needs to be forced (lovingly, but forced nonetheless) to adapt to your world, rather than the other way around.

Just to clarify, I’m not talking about taking the kid on a whirlwind vacation to a foreign country where he’s sleeping in a different bed, eating different food, and missing his toys. This process is incremental. Think, “A journey of a thousand miles starts with the first step” (or don’t since that’s kind of depressing).

Anyway, with Newt, one of his obsessions was Thomas trains. He’d set them up and push them around and around the track in the same order. He could hang out there for hours. So I’d sit down with him and talk about what the trains were doing. I’d ask questions and tell him how he “could” answer them (since he certainly wouldn’t). Then I’d act like one of the trains and go the opposite direction. Then I’d use his blanket and pretend it was snow that had fallen and blocked the track.

Again, this was slow. He’d tell me no. He’d pull the blanket off. I’d go back to playing his way. Then I’d mess with him again. I’d change the order of the cars. Next thing you know, Percy was pulling Gordon. And everybody was driving off the tracks. It was pure madness!

And then there was food. We cooked food and gave it to him. Most of the time he ate it. Sometimes, he didn’t. We weren’t jerks about it — we didn’t cook with super hot spices or only kale, but he had to deal. And miraculously, he didn’t starve.

I know there’s a large faction out there that believes in the whole inability of certain children to eat certain foods due to physiological problems. And I’m not saying some kids don’t have that. But it is incredibly rare. Super, duper rare. Why do I know this? Because we haven’t been able to evolve quickly enough to produce a gene mutation that makes people capable of tolerating only mac and cheese, french fries, and chicken nuggets.

So, again, flexibility. 

We didn’t intentionally set up situations to push Newt’s buttons, but we also didn’t go out of our way to make Newt’s life easier. If we had the chance to nudge him out of his autism comfort zone, we’d take it. If there was something that needed to get done, it got done, whether he liked it or not. If we saw an opportunity, we poked the beehive. And that’s when his life got difficult.

Like if we needed to take something away. Which meant change. And Newt hated change. H-A-T-E-D it. We’re fairly certain he would actually wake up from naps having meltdowns because he’d “changed” from being asleep to being awake (at first we thought they were some sort of night terror).

Or when he was 9 months old and we needed to get him used to drinking breast milk from a bottle so I could be away from him for more than four hours at a time. He held out for 19 hours without anything to drink. But the more important part of the story is, so did we. 

I guess what I’m trying to say here is, it’s just so easy to fall into the autism trap. In order to avoid the meltdowns, parents will pay any price. If they had a “typical” child, more than likely that kid would have to cry it out, go to their room, or deal with it (at least I hope that’s what people do). But once you get that diagnosis, the kid gloves go on.

The problem is, if you approach everything you do with your kid from that perspective, he’ll never bust out of the cocoon. He’ll safely stay in that place where everyone tiptoes around him and makes sure dinner is on time, his cup is the right color, and his trains are in the right place. And when something doesn’t go his way, there will always be a reason why. And it will always be. . . autism.

I do want to make sure to say this: in a perfect world, I would’ve been an energetic mom who was always patient and never got angry or frustrated. In a perfect world, I would’ve sweetly and gently put my son to bed every night and not gone downstairs, sat on the couch, and cried. Every. Single. Night. This was so difficult. For years we just hunkered down and didn’t do a whole lot of traveling, eating out, or attending big, public events. For the most part, we tried to keep life really mellow. Fortunately, that’s us, so it worked. 

My point is, I know how hard this is. I know how hard it is to watch your kid cry and scream and literally look tormented and tortured by the world around him and what you’re subjecting him to. But consider this. Tonight at dinner, my kids were talking about a boy who left their school because he was having so many behavioral problems. Newt said, “I sure am glad I don’t act like that.”

And my daughter replied, “Pshh, yeah, you definitely don’t act like that.”

We so easily could be that family. The fact that we’re not may have a lot to do with the luck of the draw. But I think a great deal of it has to do with what you’ve read here. Doing all of this is difficult. And exhausting. And will most definitely make you cry on a regular basis. But what the hell — life with your child is going to be hard, tiring and emotionally draining anyway.

So if you’ve got no other choice but to take a long, bumpy, winding ride, you might as well shoot for the spot on the mountain with the best view you can possibly find.

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