On terminology and why it matters

Believe you me.  I’m one of the first people to say that, at least for me, autism is a disability.

But if you ask me, “What’s that disease called that you have?”  Sorry, but- wait, no, I’m not sorry- my feathers will get ruffled.

And then others will tell you that autism isn’t either of the above, that it’s just a difference.

Why does it matter?  Because the public’s perspective on autism is so, so skewed.  I get it all the time.  “You can’t have autism because you’re a girl.”  “I thought people with autism were r-word.”  “Autistic people look weird.”  “People with autism don’t talk.”

Honestly, as someone said to me tonight, sometimes it would be better if the public knew nothing about autism than what they do know.

As always, what follows is only my perspective; I don’t speak for anyone else.  Got it?

As society stands, autism is a disability.  If a person argues with you that they’re just “a little quirky” and not disabled then they, in fact, do not have autism as a diagnosis requires a “clinically significant impairment” in daily life.

But note carefully… I said, as society stands.  If we lived in a society where people typed instead of spoke, and you couldn’t type, then who would be disabled?  In our society, where people want to live independently, go “out” for fun, and drive cars… why, yes, I am disabled.  But what if we lived a few hundred years ago, where people lived with their families until they got married (aka, never for me), listened to music and sat around the campfire, and rode horses… see where this takes us?

That’s called a social model of disability, as opposed to a medical model.  I find that it’s good to take certain principles from it, but some ways it isn’t practical.  After all, facts are facts, and the facts are that this is October 2011 and that I’m here in Pittsburgh in my apartment with Elsie P.  The facts are that Mom is going out of town for the next two weeks.  The facts are that driving is really, really up in the air for me right now, even though I have a car while Mom’s away.  Me, I like to deal with facts, and not hypotheticals, so the facts are that I do have a disability.  I’m never going to create autistic utopia, so here we are.  Rather than chasing down a cure, my personal choice is to work through the areas of my life that impede my daily getting-by, and build on my strengths.  This does not mean that I will try to normalize myself just to appear normal.  I am Lydia, and so I will be the best Lydia I can be.

Now, regarding the disease facet…

I’ve heard some terrible things these last few months.  One parent mentioned a specific autism treatment, and when informed that some kids have died from that treatment, the parent said, “At least he won’t be autistic.”  Others have said they wish their children hadn’t been born, or that everyone has the right to a typical child.

This breaks my heart.  Part of me wants to say, “Your autistic child doesn’t deserve you.”

Let’s just get this straight.  I’m not diseased.  Much like many in the Deaf community oppose cochlear implants in babies, before they can make the decision, some with autism oppose the idea of curing a little one with autism.  And you know… I’m glad I am the way I am, difficulties and all.  Sure, I would wish for an earlier diagnosis and earlier awareness… but a cure for autism would also cure Lydia of Lydianess… and gosh, I don’t want that.

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5 thoughts on “On terminology and why it matters

  1. One wee typo about what year it is (you wrote 2012 instead of 2011). Otherwise, terrific post as always. I have Asperger’s, and I enjoy reading your blog because it gives me a glimpse of someone else’s autistic life and how it is different than mine.

  2. “I am Lydia, and so I will be the best Lydia I can be.” That’s a battle cry, by God!

    And very similar to my own for my daughter, “I will help her to be the best Lily she can be!”

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