Monday, January 14, 2013

But He Doesn't "Look" Autistic...

Editor's note: Some of the language and snark in this post may offend, and honestly, I hope it does. It is never my intention for my son to "pass" in society as a neurotypical child or adult, unless he expresses to me that is what he wants. However, all of this comes from my heart and I hope that each of the five people reading this gets something out of it. You know what they say, "If one person tells five, and those five tell five..."

 I am truly hoping that this is the year of Autism Acceptance. That this is the year where people around the country, because, let's face it, the world might be too much to hope for, will accept autistic adults and children for who they are - Autists. Yes, I realize that I am probably being silly, dreaming too big, but what I am really wanting is to never hear "but he doesn't 'look' autistic" uttered from another person's lips ever again. Or at least this year.

You see, sometimes, when we meet new people, they are often confused by this giant kiddo of mine. It goes kind of like this:
They ask him, "How are you?"
He usually will reply something along the lines of, "My name is Morgan."
They will shoot me a puzzled look and try again. "No, your mommy told me that! I asked, how are you?"
Morgan: "I'm in second grade. I like pizza. Wanna hear a story? It was a dark and stormy night on the Island of Sodor...'

I, out of my own preservation of sanity (don't judge, if you allow one Island of Sodor story, you're in for ALL of them), usually tell Morgan "thank you" and have him run along to play. Then I tell the new person, who is usually looking at me askance, that Morgan has autism. I oftentimes get anything from "I saw Rain Man, the Temple Grandin movie, Mozart and the Whale, etc" "I know someone with autism!" or, the worst one, "but he doesn't look autistic." Sigh.

Why? Why say that? Do Autists have tattoos and crossed eyes that give them away? No, no they do not.

Lining things up, stereotyped behavior
Autism, while the neurology does present with different "signs" such as self stimulating behaviors, awkward speech or even no speech, lack of eye contact, and a host of stereotyped behaviors (such of lack of affection, which my son defies- he licks you, hugs you, and kisses), does not really have "bell ringer" symptoms. Unless you're there. Unless you're in the thick of it. Unless you're one of us, a parent with an autistic child. Unless you're an Autist yourself. Or, in some cases, a health care professional without a stick up your behind.

Then, after that horrible question, oftentimes there comes the most horrible for me, at least: "Do you ever think he'll grow out of it? Or be cured? Or pass as normal?"

First, just what the hell is normal? I know, I know, a setting on the dryer. But seriously, have any one of you ever met someone, that after scratching the surface of their existence, you could deem as this "normal" thing? I can't say that I have.

Cured? Yeah, I'm going to leave that one alone or I'll blow a gasket. Just note that offends most Austists and a lot of parents, okay?

On "passing," that I will leave up to Morgan. He's 100% autistic and proud to be so, especially after reading a wonderful book by Landon Bryce, "I Love Being My Own Autistic Self." According to his teacher, he tells his class daily that he's autistic. I love that. To me, this indicates that although he might not know exactly what autism is, he knows that autism is not to be feared, because he is autistic. I want my children to love who they are; it would not matter if they were gay, black, or whatever. To me, as a parent, you teach love and acceptance, not to hate something that you cannot control, such as your neurology.
Reading "I Love Being My Own Autistic Self

I've had arguments with family and friends on if we're doing the right thing in telling our son about who he is. Or, as they phrased it "what." Well, he isn't a lab specimen, he's a boy, an Autistic boy. I cannot separate the Autism from the boy, nor do I want to. To take away Morgan's Autism would take away the quirky little boy I love so damned much. Some of my family members don't believe in his diagnosis. That's okay, they don't live our life. They don't see the struggles, the outbursts (few and far between, but three last week), the horrendous IEP meetings, the bigotry, the stares, the tears- ours and Morgan's, the worries, and then, the joy over the smallest of milestones and when someone just accepts him.

Milestone: Cutting soft foods, after a prompt

Milestone: FINALLY playing with Legos bigger than Duplos

It's okay with me if my son never "passes" as neurotypical. If those that I see claiming to be that way are what he needs to personify, I'll encourage him to "act autistic" as much as humanly possible. Yes, that was sarcasm. I'm not sure how to "act autistic" any more than how to "look autistic."
This is what Autism looks like
This is also what Autism looks like, in our house

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