But He Doesn’t Look Autistic

Jan 04, 14 But He Doesn’t Look Autistic

Nowadays everyone seems to be aware of autism in some form or another. Autism is on the news, in entertainment, on the internet.

Autism is pretty visible.

Visible does not, however, equal understanding.

As much as people are aware of autism, most are still in the dark as to what autism entails. So much so that when I tell people my son has autism, they are often confused. You see, my son looks “normal.”

They say he doesn’t look “autistic.” (Whatever that means.)

Then, after a beat, I get “…but he’s really high functioning, right?”

My heart sinks a little whenever I hear that. Um, yes. But he’s still autistic. I get the feeling that by labeling him as “high functioning,” people expect Jack to be able to control his autism. Or not “act” autistic.

Autism is what they call a “spectrum” disorder, which means individuals can present with a whole range of behaviours.

Some autistic people can speak, some can’t.

Some autistic people can control their bodies, some can’t.

Some autistic people can attend school with their peers, some can’t.

I could go on and on, but the old (new?) adage applies: “If you’ve met one person with autism, you’ve met one person with autism.”

Snowflakes and autistics. No two are the same.

Image Credit: Wendy Baskin

Image Credit: Wendy Baskin

Qualifiers mean nothing in terms of the intelligence of an individual or the quality of their life. People on similar parts of the spectrum can have similar traits, period.

There is no blanket statement that can be made.

Yes, my child is “high functioning.” That is where he lies on the autism spectrum, but that is not his diagnosis.

He is autistic.

So when you say that to me, I feel like I should apologize for something.

Like perhaps we don’t qualify as an autism family because my son can attend a mainstream classroom in school. Or because he can speak and communicate.

Because he’s “not that bad,” and he ought to be beyond the struggles and stress of “really” autistic kids.

That our lives somehow be “easier.”

“Pardon me,” I want to say, “but your ignorance is showing.”

But I don’t.

Autism is a spectrum disorder, but as much as it would appear that “classically autistic” (severe) individuals are “worse,” and “high functioning” autistics (Asperger’s, etc) are not, it’s just not the case. It’s not an apples and oranges situation.

Oranges and tangerines, perhaps.

Shorts and capri pants.

Even, if we must, pieces of the same puzzle.

The autism community is a tumultuous one, full of souls just looking for safe harbour in a relentless storm. We beat each other up enough on our own, we don’t need help.

We fight over whose kid has the worst stims. Who deserves the ever-limited resources available. Who’s gotten less sleep, whose kid eats the fewest unique foods.

We blast each other for being “just” parents, for being or not being autistic ourselves, for picking the “wrong” therapies for our children.

We’re bratty siblings pulling each other’s pigtails.

My point is, that while we are allowed to pick on each other (which we really ought not be, but that’s another post for another day), you’re not.

You may not diminish my child by calling him “at least,” or dismiss him with a “but.”

He has enough piled on his small shoulders without having to live up to some sort of expectation because of his abilities.

My kid has come a long way, and yes, he’s bright, hilarious, and awesome.

And autistic.

Featured Image Credit: Wendy Baskin

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  • Data

    As the parent of a child on the spectrum, this seems like looking for a fight where there really doesn’t need to be one.

    You said it yourself: “when you’ve met one person with autism, you’ve met one person with autism.” Thus, the corollary of that is that people can’t use their experiences with autism to understand your child when you first tell them your child has autism. If everybody’s autism is different, then learning someone has autism for the first time doesn’t tell you very much, does it?

    Thus, people are simply trying to better understand. I try not to be defensive about that stuff. Imagine if your child received the same contempt you seem to display here every time your child committed some minor social faux paus? I know I would be tempted to tell the aggrieved person to chill out.

    You don’t really explain yourself other than implying that your feelings are hurt, so I’m struggling to understand what you find objectionable about the idea that severely autistic individuals seem to have things worse off than high-functioning individuals. As you said, autism is a spectrum disorder. The very meaning of a spectrum disorder is that the intensity of manifested symptoms determines the severity of the diagnosis. In plain English, higher-functioning = overall less intense manifestation of symptoms or greater potential for independence and/or self sufficiency. I’m not sure why you seem to be offended by the thought that a less intense manifestation of a developmental disorder is a better thing for your child, you and your family. That would seem to be common sense.