The Story That Never Was

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This is a story about a story that never became a story. Got that? A story. About a story. That never became a story.

A couple of weeks ago, I wrote a blog post about an incident that happened in our house over the holidays. But because it was a story about a couple of the older kids, I didn’t hit the Publish button right away. My older kids are on Facebook now. They have virtual friends. They’re connected to some of their cousins. And the story I was telling could be interpreted in more than one way. I saw it as an illustration of some of the challenges that teenagers on the spectrum face—along with a hopeful, encouraging conclusion about how my kids are working through these challenges. But other people might focus only on the challenges and the difficulties, and they might get the wrong impression about my kids.

See, I know a thing or two about ASD. I get it in ways that many other people don’t. Sure, my story might help people understand autism a little better, but at what cost? The way my kids’ friends perceive them? The way my kids perceive themselves? Was I putting them out there in the wrong way? It didn’t seem so to me, but I wasn’t sure.

So I did something I had been thinking of doing for a few months. I told them that I occasionally post stories about being an ASD dad on social media. Then I e-mailed my story to them and asked if they’d be okay with my posting it.

They were and they weren’t.

One of them had an easygoing response. “Whatever raises awareness, Dad, I’m okay with. I know you’d never make me look bad. I don’t even have to read your story. Go ahead and publish it if you think it will help.”

The other one was not okay. “I don’t want people to think I’m a nervous, insecure, insane, freak!” That’s all I needed.

And so the story never became a story.

Careful . . .

It seems we’ve entered a new era. When I started this blog back in 2012, it was easy to tell stories because the kids were young and unconnected. Now I have to be more selective. But that’s okay. I’m sure there will be plenty of stories to tell that don’t run the risk of putting them in a bad light. Stories like this one about my boy’s success at singing in the chorus. Or this one about my daughter correcting one of her teachers. Or this one about the Catholic psychologist who wrote some really messed-up stuff about ASD and who I convinced to issue an apology.

Part of me will miss telling some of the harder stories—not because I want to embarrass my kids, of course. I’ll miss it because there’s this perception about ASD out there that it mostly affects little kids, and that’s just not true. There are plenty of stories about young children, who are so damned cute and whose parents are just beginning to come to grips with a new diagnosis.

But there’s another whole population of ASD folks out there. They’re older, and it’s not so cute when they do some of the quirky things that autistic kids do. When someone is five, he’s precocious; when he’s 15, he’s rude. She’s given much more leeway when she’s three because she’s expected to “outgrow” her autism; when she’s doing the same thing at 13, she’s stubborn, willful, or disturbed. Of course, none of this is accurate, but it’s how they are perceived.

So I’ll be more careful. I’ll look for the stories that emphasize how awesome my kids are. Or how far the autism community has come in gaining acceptance—and how much further it has to go. Or how much Katie and I are learning and growing as we raise our kids. Or God knows what else. Because our kids are still autistic. They will be even when they become adults. And the world needs to see that this very broad autism spectrum runs not just from low- to high-functioning, but from infancy to old age as well.

Now, would you believe me if I told you that my story-not-a-story was the best thing I had ever written? No? Well, you’ll never know, will you?

 

 

3 thoughts on “The Story That Never Was

  1. Thank you, particularly for the point you made towards the end.

    But there’s another whole population of ASD folks out there. They’re older, and it’s not so cute when they do some of the quirky things that autistic kids do. When someone is five, he’s precocious; when he’s 15, he’s rude. She’s given much more leeway when she’s three because she’s expected to “outgrow” her autism; when she’s doing the same thing at 13, she’s stubborn, willful, or disturbed. Of course, none of this is accurate, but it’s how they are perceived

    As the mom of older autistics it is one of the pieces of advice I try to give, always think of the future. Is the thing that your kid is doing going to be cute, sweet, easily overlooked, etc when they are 15, 20, or older? They don’t stay cute toddlers forever, they grow up, and the world becomes less forgiving, this is true of any child, and we as parents would do all of our kids a huge favor if we remembered that.

  2. Thanks for sharing this perspective. I have a 13 yo on the spectrum and I have noticed that as he has gotten older, the books, blogs, resources, “stories” have dwindled. Reading this post has helped me to better understand why that may be – along with watching my son’s awareness grow. There are so many aspects of ASD that are simply baffling and when he was little, there was a never ending supply of resources I could turn to for insight and ideas. Now that he is a teen, I am able to reflect and see how far he has come and how well he is doing. I feel more hopeful than ever that he will lead a very “normal” life – with some quirks. But then there are those moments when I observe a behavior, a reaction, moments of confusion and miscommunication and immediately I want to know what other ASD teens are doing and how their parents are mentoring them. Perhaps I need to facilitate a private place for ASD teens to come together and share, observe, and learn using social media as safe tool for bringing them together? I don’t know. I appreciate so much your ability to pause and confer with your teens. I need to do that more often while empowering my son to “own” his ASD on the precipice of adulthood.

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