Evolving Thoughts on Autism, from a Parent

When Theo was diagnosed with autism at age four, I’m not sure I could tell you what I really thought about it. I knew Theo as Theo, so knowing that he was autistic…well, it was just one more thing to know about him, you know? One little piece of information to maybe make him a little less of a mystery to us.

As life progressed, I became more aware of the fact that there are two distinct schools of thought regarding autism: One is that autism can be “cured,” whether by diet or by therapy or whatever. The other is that autism is simply an example of neurodiversity—that different people have different traits and characteristics, and their brains function differently.

I knew right away upon learning this that I was in the neurodiversity camp, though I wasn’t opposed to trying dietary changes and some types of therapy to see if I could help Theo better manage some of the frustrations that come with having a brain that fires a little differently from other people’s. For example, we learned that artificial flavors and colors seem to trigger more frustration and less ability to focus in him, so we strongly limit those. (I’m not going to not let him have a piece of cake at a birthday party when I see that the cake decorations have artificial colors…but I’m sure as heck going to make a mental note so that later in the day, when he has a meltdown over something insignificant, I can remember, “Okay, he had artificial colors earlier. That’s probably part of why he’s so frustrated right now.”)

But still, I didn’t see things like this as a “cure.” We did a lot of occupational therapy to help him gain hand strength so he wouldn’t struggle so much with handwriting. We did a lot of sensory therapy when he was younger to help regulate the sensory-processing disorder that comes along with autism for him. And, as I said, we watched his diet and made tweaks here and there to try to minimize the effects of certain foods on him.

We did these things all in an effort to make the day-to-day easier for him, not because we felt they would “cure” him of autism. And I think, in some ways, we thought if we could find ways to make him seem more like his typical peers, it would make his life easier—and if his life were easier, it would by extension make our lives easier. Because I am honest enough to say that parenting Theo has sometimes been incredibly difficult. That doesn’t mean that I’d change who he is in any way, but it’s just an honest statement that he hasn’t been an easy kid to raise.

As life has progressed, I’ve been less inclined to try to help him be more like typical kids, though. He’s always going to have autism, and I don’t want him to resent that—I want him to own it with pride. I have adult autistic friends who are able to do that, and I feel as if they live happy lives. They have their struggles, certainly—don’t we all? But they are largely happy with who they are and how they live, and I want that for Theo, too.

So as he’s gotten older, I’ve been making it a point to tell him about other people who are autistic. I want him to know he has a tribe—a group of fellow neurodiverse folks who get what it’s like to have your brain firing so rapidly and so differently that sometimes it’s hard to slow it down and try to focus. And I want him to know that his tribe is living good, happy lives.

I think it’s working, too. The other day, he came up to me and was excitedly telling me about a video he watched about the world’s smartest people. “And some of them have autism, Mom!” he exclaimed, and started telling me about one of the women profiled.

“I’m not surprised,” I said. “A lot of really intelligent people are autistic.” I mentioned a few others who are (or were) reportedly autistic: Albert Einstein, Bill Gates, Mark Zuckerberg, etc. Theo beamed with pride and then went about his day. But I hope that short discussion sticks with him when he feels frustrated with his brain—which he often does, unfortunately.

The truth is, I have evolved to a point where I’m very proud of the fact that Theo’s autistic. It’s part of what makes him incredibly unique, and I love the fact that he’s such a unique, complex soul. I find myself wanting people to know he’s autistic because I want them to see that it’s just one facet of his amazing personality.

At this point, Theo is very open about being autistic, too, which I think is great. Frankly, I hope it continues. It would make me sad to see him get to a point where he hides who he is because he somehow sees it as something undesirable. I hope he will always feel the pride in it that I have come to feel on his behalf. I hope he will always recognize that it’s a gift that makes him uniquely him.

But as always, I will follow his lead. If he gets to a point where he doesn’t want people to know that he has autism, I will certainly respect that. But I will also try my best to let him know that even if he isn’t particularly thrilled with that part of himself at that time, I think it’s part of what makes him so very special.

Loving oneself can be so hard to do. I know that very well firsthand—like I think many people do. I just hope Theo can take a cue from us—from our embrace of neurodiversity—and continue to love himself. Chris and I certainly haven’t always been perfect, but we are a continual work in progress, and I think we’ve reached a point where we have stopped seeing autism as a roadblock and are now seeing it as just what it is—an example of the ways in which neurodiversity makes a richer, more interesting society.

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Simply amazing…

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