I Don’t Know My Autistic Son

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I watched a DVD the other day, as recommended by one of my all-time favorite ladies, Nancy.  She doesn’t really look like a Nancy, but that’s another story.

It was the 2007 HBO Special, Autism:  The Musical.

The cover sets the tone:  “Prepare to be inspired.”  I’m not sure that I was, however.  It certainly sparked a lot of feelings and emotions, and quite a few conversations around my house, of which I will delve deeper in upcoming posts, but it had me thinking, can you ever really KNOW a person with autism?

The DVD in question follows Elaine Hall, founder and creator of The Miracle Project, as she attempts to cast, write, and present a full blown stage musical with an all-autistic cast.

I’ll probably review the entire video after I’ve had a chance to re-watch.  It wasn’t necessarily inspiring, but it was real.  Some of the conversation and dialogue hit really close to home.  Beth requested that we turn it off on more than one occasion.  She’d rather watch Law & Order: SVU.  Some how it’s easier to watch fake women murdered than to watch an all-to0-real portrayal of kids and their parents struggling with autism.

Back to the topic at hand, with the DVD tie-in, I promise.

When Jake was a kid, and sorely lacking in communication, we decided what his favorites were.  White or chocolate milk?  That’s easy.  What kid doesn’t like chocolate milk?  Favorite color?  Must be blue – it really brings out his eyes.  Sesame Street?  Duh.  Too easy.

Over time, though, Jake would assert his own opinion.  It was welcome.  When he’d let on that this movie was preferred over that, or that he likes this food and not that one, it was insight into his mind.  We relished it.  We still do.

But what else is going on in his mind?  We laugh almost daily at the things he says, which are limited by the short supply of words in his lexicon.  Sometimes his coming up with something to say, and only having a few words to choose from, makes for funny stuff.  Example:  it’s not an attic, it’s an “up-cellar.”  What if he’s apprehensive, or embarrassed, or one of the thousand other descriptors that “good” or “bad” or “scared” don’t really cover?  He can’t tell us.

What else isn’t he telling us?  His preferences of food is so limited, I can speak pretty candidly about what he doesn’t like, but that’s not the same as knowing what he wants.  His fear of new things and reluctance to branch out hinders our ever finding out that he might LOVE sushi.  He’s not the kind of kid that can be reasoned with, and cajoled into trying sushi.  If it’s different, it’s most likely “is-gusting.”

What does Jake want to be when he grows up?  I have no idea.  He’s got that special form of repeat echolalia (that I’m sure has a name) where he’ll mostly likely repeat the last part of the question to you when you ask him something.  Goes something like this:  Us: “Jake, do you want to ride a snowmobile?”  Jake: “ride a snowmobile.” Us: “well, he must really want to…” You need to ask him something a number of times to get a sense for what he really intends to impart.

I’ve never gotten a good description of his school day.  I know this is typical teen speak, and no kid anywhere has ever offered anything beyond “nothing” as a response, but I wish there was more to it with Jake.  We used to ask him if he had fun at school EVERY SINGLE AFTERNOON.  This eventually morphed into him telling us, “Had fun at school today.” every time he came home.  Not a real answer, just a conditioned response.

Christmas time is really starting to suck.  Every little boy gets blocks and Fisher-Price noise makers and Wiggles DVDs, but what do you get your budding pre-teen?  Of course, he’s addicted to Youtube, Nintendo, and dinosaurs and airplanes/trains, but we own every dinosaur or plane/train manufactured within a thousand miles of here.  Youtube’s free, and we own every Mario game ever made (his favorite).  The nuances of his personality are so much harder to discern and buy for.  His interests don’t lend themselves to crafts, sports, or even experiential gifts.  He would NOT appreciate concert tickets, or the chance to see the monster trucks come to town.

In the video, Elaine’s son is non-verbal.  She takes him to begin work with a DynaVox, which is alternative speech device.  Basically a box that would read what you typed into it (pre iPad).  The kid came out with:  “Mom, I want to put you on the spot.  I want you to be a better listener.”  She was floored.  She thanked him repeatedly for telling her this, and vowed to do better, but you could tell she was choking back tears.  She was autism-expert enough to star in her own HBO special, but didn’t know her son needed that from her.  At least her son had found the means to tell her this.  If my son is cognitively able to think in these terms, he’s certainly unable to convey it.

It got me wondering if I really and truly KNOW my son at all; at least beyond what I can observe and infer.

Can anyone really know a kid with autism?  I don’t know.  Of my three kids, Jake is the most like a stranger.

Does anyone else feel this way?  I’m not asking for permission for feeling this way, or for validation of my own feelings; just wondering if I’m all alone in this.



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    • Dawn Pray on January 5, 2014 at 9:34 pm
    • Reply

    Do I look like a Nancy?

    1. You, my dear, look like a Heather.

    • Nancy Deschene on January 5, 2014 at 7:19 pm
    • Reply

    Do I look like a Nancy? I feel like a Nancy!

    1. You totally look like a Nancy!

    • Nancy Moscone on January 5, 2014 at 6:27 pm
    • Reply

    I have to admit I have never watched that DVD myself, but when I saw the title I thought of you. I know, however, that I WILL watch it now. On another note, I don’t “look like a Nancy”??? I’m turning 62 in a little over a week and I’ve worn this name for every one of those years and now I find out that I don’t “look like a Nancy”! Do you suppose it’s because I was your teacher first and your friend second?? If you had always known be as Nancy would I look more like a “Nancy” to you? Just wondering.

    1. I think for sure had we been friends first, and teacher/pupil second, you’d look more like a Nancy. I added that comment purely because I remember telling you that repeatedly before graduation in 1996. I’m surprised you don’t remember everything you ever discussed with one student amongst the thousands you’ve taught; and nearly 20 years ago to boot!

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