lost in conflation — not autism

Why is it that we are so quick to demonize autism — to make it the catch-all for anything difficult in our children’s lives, in our families’ lives; how is it that we are perfectly willing to assign to it anything and everything challenging and yet, when we find something beautiful, we say that is either in spite of autism or gloriously representative of its momentary “absence”?

From Typical, December, 2012

The search for a scapegoat is the easiest of all hunting expeditions.

– Dwight D. Eisenhower

Someone very close to me is fighting ovarian cancer. It’s awful. No one should ever have to live through the hell that she has lived through this last year. We’ve thrown our hands up to the sky and yelled ourselves hoarse in anger. She shouldn’t have to suffer. She shouldn’t have to fight for her life.

If she were male, she wouldn’t have ovarian cancer. Cause, ya know, she wouldn’t have ovaries. As angry as I’ve ever gotten, I haven’t ever once said or thought, “F@%k femaleness.”

I mean, that sounds really odd, right?

“Screw your gender because you have cancer.”

No.

As a woman, I am far more likely than my husband to get a urinary tract infection or osteoarthritis, or to fight anxiety and depression.

I’ve had urinary tract infections, and man, they suck. And I do, in fact, suffer from anxiety. I carry it like a toxic gas, trying desperately to keep it contained until the days when it escapes, and when it’s at its worst and I’m fighting with everything that I have not to choke in the cloud. I get angry in those moments. At anxiety, at myself, at my impotence in the face of something that I cannot control.

But I never think, “I hate my femaleness.”

I just … don’t.

Even though it is indeed my gender that has made me far more vulnerable to anxiety than I might have been.

But ….

When my daughter’s anxiety has flared — yes, the very same anxiety that I just told you that I live with too, I have turned my anger on her neurology.

When we realized that she was experiencing seizure activity, I cursed her neurology.

When she struggled to grasp the most basic building blocks of math and reading, I blamed her neurology.

When she’s been moody and obstinate and frustrated and, well, perfectly, appropriately defiantly tweeny, I am embarrassed to say, I have chalked it up to her neurology.

Anxiety … is not autism.

Epilepsy … is not autism.

Learning differences … are not autism.

The moods to which we are all subject and all entitled … are not autism.

Are there challenges inherent in autism? Hell, yes. But these are not they.

Autism is her neurology. It is NOT any of these other issues which, if we’re being truly honest, are the primary culprits in creating challenges in her life. Do they often ride shotgun with autism? Yup. The numbers don’t lie. But just as we’d never think to damn our gender for the issues to which it makes us susceptible, it’s never okay to blame autism for all the other “stuff” which it, most decidedly, is not.

I heard a story at a conference I attended a couple of years ago about a young man who put a gun to his head. A therapist had thought that some off-the-cuff CBT (Cognitive Behavior Therapy) might help him understand his challenges, so she told him that his autism was a ‘bad guy’ in his head who wasn’t letting the ‘good guy’ (presumably his nonexistent “non-autistic” brain) do the things it needed to do.

So he put a gun to his head.

Because as a literal thinker, he thought it would be a good way to “kill” the bad guy who wasn’t letting the good guy do his work.

The ‘bad guy’ was his brain. His brain was him. Killing the bad guy would mean killing himself.

You can’t tell someone to separate how they exist from who they are.

It doesn’t work.

It’s not real.

He put a gun to his head to kill the autism.

– From What My Daughter Is Not Doing, September, 2013

We have to stop making autism the boogeyman for all that ails us. It’s not fair to our kids. It’s not fair to autistic adults or the autistic adults that our kids will become.
.
And it’s a very, very dangerous game.

 

 

 

11 thoughts on “lost in conflation — not autism

  1. Pingback: lost in conflation — not autism | a diary of a mom | My Autism Site | All About Autism — My Autism Site | All About Autism

  2. With non-autistic kids, even with gay, trans, or gender non-conforming kids, we just do not blame every single difficulty or challenge in their lives on some innate characteristic of their being. We don’t tell them that everything good or beautiful in their lives is in spite of what they were born. We encourage self-acceptance as well as working through individual challenges. We don’t tell them, by and large, that any success or happiness they could have later in life must be at the cost of becoming a fundamentally different sort of person.

    Why this is an unthinkable approach when it comes to autistic people, I am at a loss.

  3. I genuinely believe that my skills as an artist grew out of my autistic neurology, so as far as I’m concerned I’m grateful for the gifts it has given me. Sure it also presents many challenges, but rising to those challenges is what makes us stronger. Anxiety is an unfortunate side effect of struggling to deal with a world you don’t understand, but it is the struggles that cause the anxiety not the autism.

    Anyone saying their childs achievements come despite their childs neurology are perhaps not understanding the unique way of thinking that an altered neurology can sometimes bring to the table. Look beyond the difficulties, to the beauty of the mind within and you will be surprised at what you find!

  4. I have extended family with children on the spectrum and had a conversation with grandma re. helping one of the children not “be mean to the dog”. I was sharing some ideas about “connecting the dots” of how-would-it-feel-if for the boy, to how does it feel for the dog, would you like it if, etc., kinds of questions. And her response was something to the effect of “I don’t know if he’ll get it because of the autism”. I told her that she needs to break it down for him so he can make the connections (probably no one has yet).

    And I also mentioned that his dad is an insensitive jerk with a bit of a mean streak, and that in all likelihood it’s NOT the autism (at least not completely), but the fact that the behavior model he has SUCKS. In this case, it’s a reverse of the “bad autism parent” stereotype. The poor kid is having a hard time because one of his parents IS a bad influence. Every behavior thing ISN’T autism.

  5. Pingback: The Autism View from Over Here | St Monica's Bridge

  6. Pingback: Autism Signs Can Lessen in "Predictable" Environments: Study | Special Needs Now

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