Why I Don’t Talk about Autism

If you’ve read any entries on this blog from the past two years or so, you likely know that my youngest son, Sam, has Down syndrome. I talk about Down syndrome a fair bit because it’s part of who Sam is. It doesn’t by any means define him, but it does impact his daily life in some ways, so it naturally comes up when I talk about what he’s up to. Plus, I’ve become pretty active in the Down syndrome community and advocating for related causes where I can, so it comes up there, too.

But what you might not know is that my older son, Theo, has autism. I don’t talk about it much. I used to talk about it more than I do now, but these days I don’t talk about it much.

Why? Quite simply, because I don’t understand it. My son and this thing called autism are, at times, a complete mystery to me.

You might wonder why the same isn’t true of Down syndrome. After all, Trisomy 21 is a tricky chromosomal anomaly, and there’s still a lot that’s not known about it. True. But I know Sam like the back of my hand, so I feel comfortable talking about Down syndrome as it relates to him. Sam is not a mystery to me the way Theo is. Let me explain…

Sam is predictable. He acts like I would expect any two-year-old to behave…albeit delayed in some ways. Yesterday, when it was time for bed, Chris said, “Sam, pick up your cup and give it to Mama.” We waited briefly—because with Down syndrome, it helps to wait a couple of beats while the person processes what you’ve asked—and Sam looked right at me, squatted down, picked up his cup, and waddled over to me with his newly minted walking skills, then placed the cup in my hand. Same thing with books: Sam will have you read Tickle Time ten times in a row because it’s his current favorite—but if you say, “Not this one; go get me another book,” he will dutifully trot over to the bookshelf and select another one for you to read.

This is not true with Theo. It has never been true with Theo, and it’s still not true, even though he’s six years old. Sometimes he can respond in this typical way, but often he is so locked in his own thoughts, that fascinating world that exists in his own head, that you can’t get through to him with a simple request. They tell me this is autism, but I don’t know—is it? Or do I just have one son who is far more locked in his own head than the other one is?

So I don’t understand it. I don’t know what gets him locked in his own thoughts so completely. But I do know that if I go over and touch his shoulder, gently turn him toward me, and attempt to make eye contact (which is difficult for him), I am more likely to be able to break through, and my request is more likely to be met.

But the mystery deepens, because this isn’t always true. Sometimes Theo is super-focused on something but he’s willing to share it, and he’s all wide-eyed, excited chattering. At breakfast, he will maintain strong eye contact with me, two big, sparkling, round blue eyes meeting mine as he talks nonstop about his latest obsession, whatever it may be. (Right now, it’s coin collecting. Before that, it was presidents. And before that, elevators…for a very, very long time. I know a lot about elevators now. More than I ever thought I would.)

So I never know which son I’m going to see—the one who is engaged and focused and clear, or the one who is so locked in his head that sometimes even with direct physical contact I can’t seem to get through to him.

They call it autism…but is it? Or is it ADHD, which is what they’ve also called it? Or is it giftedness, which is what Chris and I have called it? I don’t know. And frankly, I’m not sure it matters. The only reason why it might—why I even particularly care—is because there is a gifted school in our area, and if that is a place where Theo would finally feel comfortable in school, I would find a way to enroll him there. But they won’t take children with an autism diagnosis…and right now, my son supposedly has autism.

So how can I talk about it? How can I say what my son does or doesn’t have when the truth is that I don’t even know? Nor does the school district, who told me point-blank that they were assigning a diagnosis of high-functioning autism, but they honestly weren’t sure what was going on with him. He clearly didn’t process information or react like a typical child, but they didn’t know why. Indeed. A mystery.

The other reason I don’t talk much about autism is because I’ve not found the autism community to be anywhere near as open and accepting as the Down syndrome community. There is very little judgment in the Down syndrome community, I’ve found. We’re all working to do the best we can with our little 47-chromosomed kids, and there’s very little of the one-upsmanship or “mommy wars” you see in many other communities.

When I’ve dipped my toe into the autism community, I’ve several times seen judgment that made me uncomfortable. People immediately want to know how high-functioning your child is…and if he is so-called high-functioning, they dismiss you with a wave of the hand and a “you’re so lucky.” And what I really want to say is, “Well, yes…yes, I am lucky. I have a terrific child. But so do you. Our kids have different challenges and different strengths, and there’s no point in comparing apples to oranges.”

The truth is, I judge myself enough. I don’t need other people doing it too. So having taken a few tentative steps into that world and been a bit burned, I’ve largely retreated. I do know several parents with kids on the autism spectrum, and I consider them very good friends. I enjoy their company, I enjoy their kids, and they’re not the people I’ve seen judgment from. Because in any community, there are good people…and I have indeed found some and consider them to be close friends of mine. But when you talk about the autism community at large…well, I’ve just found a little too much judgment going on there for me to feel comfortable being a big part of it. I sometimes wonder whether some of the criticism and judgment in the autism community stems from the fact that parents are frustrated because they, too, don’t really understand their children—or this supposed condition that they have. Maybe we’re actually united in our frustration and confusion, even if we don’t know it.

And yet another reason why I don’t talk about autism much is because I don’t know what parts of Theo are touched by autism and what aren’t. For example, Theo can have quite a very quick temper when he’s unsettled by something—and it may be something seemingly completely innocuous and unexpected. But is that autism or just his temperament? I honestly don’t know, so what’s the point in assigning any particular reason or label to it? All we can do is continue to try to help him self-regulate and be done with it. And so we are.

That goes for positive traits, too. Theo speaks in a manner that is much older than age six—it fits right in line with what they call “professor speak,” something that is common in some kids on the autism spectrum. But is his speech a result of autism, or is he just a kid who excels in verbal ability and picks up complex phrasings from adults? I have no idea—so again, what’s the point in talking about it as autism when it might not be?

Theo is a mystery to me—a beautiful, creative, bright, exhausting, challenging, funny, never boring mystery. Sam is my “textbook” kid who does what two-year-olds do and charms along the way. Seeing how predictable Sam’s behaviors are only serves to remind me of how unpredictable Theo’s are. But yet again—is that autism or just Theo?

What it boils down to is that I can tell you everything about Theo. I can talk about all of the parts of his personality—the positive parts and the not-so-positive parts. I can tell you about how his whole face lights up in a brilliant smile when he finds out he’s going to go visit any of his grandparents or have a play date with his best friend, and I can tell you how he cannot comprehend the consequences of some of the things he says, despite our best attempts to make him understand some serious topics.

But I can’t tell you what’s autism. I can only tell you what’s Theo.

Mr. Tender Heart
Mr. Tender Heart

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