Saturday, July 26, 2008

Autism. Really.

I

Somebody quacked. Somebody screeched. Then came a yelp in a lower register. Tourette’s maybe? That was my first thought. It happened again. Quack, screech, YELP, the same exact cadence. I was enjoying it somewhat. Once in awhile I will chirp or trill, but I was quiet for this ride. Quack, screech, YELP. The man in front of me was getting angry. I could see his neck turning red and his eyes narrowing as he tried to concentrate on his book. On the next quack, he turned sharply to the young men behind me. Would you be quiet? Because that is very rude. Briefly, there was nervous laughter, as the offender(s) seemed to debate whether or not compliance was warranted. Not Tourettes? Was the quacking voluntary? How much did it matter?

Squawkers McCaw was tucked in a messenger bag. We had had a good day, riding a trolley down to Chicago’s Navy Pier, interacting with other tourists, coming back in a taxi. The cab driver had been fascinated by Squawkers, asking him questions, and even inviting him to sing. But first he’d asked the same question so many others do upon seeing this bird: Is it real? Now I found myself on the ‘L’, wondering something similar.

I’d heard it many times during the day. Is it real? A woman in front of the art gallery had jumped as if he might bite her. A baby had startled, her eyes full of fear. A waiter on his way to work had stopped to talk, and then scoffed, and then expounded on levels of “realness”—“Well, he’s not a figment of my imagination…” What was real and what wasn’t had become the theme of my two and a half day trip to Chicago.

II

Meanwhile, around the web, discussions continued regarding Michael Savage’s claims that 99% of all autism is no more than bad behavior. I’d left my computer at home; this trip was about having fun, not working. Sometimes I forget how the two can’t really be separated. Anyway, this meant I stayed out of most of the discussion online. Before leaving home, I’d seen some commentary I’d found somehow more disturbing than Savage’s original remarks. Neurodiversity is to blame for this backlash, the anger intended for fakes like me is falling on “real autistics.” The one percent? Of course. Of course this is how some people would spin it. I needed a break from this noise.

III

Real autism means having different social needs and it means having different ways of communication, as well as obsessions or repetitive behaviors. Ticket, ticket, ticket. This is the word I use to say hey, that car is about to hit us or I need to stop for a drink of water or that is an amazing view of the skyline. Ticket comes out easily, and I know what I mean, and the people with me are somewhat used to it now.

Ticket. I have something to tell you. This is not the “real” me. The real me is the one you know from the blog, okay? The written me. This is just my physical presence, stumbling along the best it knows how.

IV

In another universe, real autism means screaming and silence. I have known these things too. More of the silence than the screaming, but I’ve done a fair amount of expressing myself in these less conventional ways.

You are a freak! This was what my co-worker said when I shut myself in the walk in cooler and howled or hit myself over and over on the head with a clipboard. Sometimes the words are there right behind my mouth, locked in a traffic jam that won’t clear up until the emotional rush hour has passed. Sometimes they are far away or in a dark tunnel; they will emerge in time. When I was howling, I’ll say, I meant that I could not fulfill your two conflicting requests at once. Why are you talking about it now, she will say. You are a freak.

V

At the Art Institute of Chicago, I try on a chain mail glove. Rough and smooth at the same time, just the right kind of heavy. I am craving a weighted vest. I don’t know what I want or expect from it, probably something like this. I know exactly where my hand is in space. I feel alert and powerful. Energized. Reluctantly, I remove the glove and feel like I’ve taken off my glasses instead. My edges blur, I return to my normal state, less clearly defined to myself, if no less real.

VI

The quack and screech on the train didn’t matter to me. The noise was disruptive in much the same way the loud chatter of people on cell phones and the ubiquitous honking of horns was. Once it occurred to me the yelps might be the workings of a neurology which demanded them, the contrary thought that this wasn’t the case had less room to maneuver, less power to offend. Maybe this was one of those behaviors that, while voluntary, can be suppressed only with great effort and at the expense of energy needed to function in other areas. I have a few of those myself. Ticket. It had cost me nothing to assume the quacking was necessary.

What does matter about this, about the Savage view of autism, is that it discourages tolerance in a world where tolerance is so scarce already. What hasn’t been as widely recognized is how the language used by autism charities and others calling themselves advocates has contributed to the slippery slope down which the filth of Michael Savage’s words came sliding. How can people accept “train wreck,” “tsunami,” and all of the other inappropriate, harmful terms used in speaking of autism, only to turn indignant when somebody dares to call autistic children “brats?” Where was the anger at “burden” and “empty shell” and false analogies to cancer and abduction? I saw plenty of the “neurodiverse” write against these things, but what about those “advocates” who insisted such complaints were trivial?

Note: for an excellent commentary on this topic, see this post at Whose Planet is it Anyway?

VII

Meanwhile, a man threatens to burn down a house where a boy spins in the front yard. Meanwhile a mother and child are denied service at a restaurant. A family is ejected from an airplane. A child is evicted from his kindergarten class, a family is banned from attending church, a teen is given a series of shocks at the Judge Rotenberg Center for the crime of standing when he had been ordered to sit. Another autistic adult is denied a job, another is fired, another is banned from a retail shop. On and on and on.

Do these things matter only if they happen to someone you have decided is the “real” autistic? Where is the line that defines discrimination?

As always, those with power will define what is “real” for the rest. Power is not just in money and status, but also in the currency of language. Every time, in the name of advocacy, someone asserts, without consequence of strong rebuttal, that certain autistics are less deserving, less real than others, the Savages of the world are empowered.

VIII

Ticket! I have something to tell you.

Are you listening yet?
(I don't care if you think I'm a brat.)

I am real.

18 comments:

  1. Lets hope that there is some good news to celebrate soon to act as an antidote to all the bile.
    Best wishes

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  2. Thank goodness I read your post before I published my ill thought out, bigotted rant about why Batman is not a 'real' superhero like say Superman (able to leap tall buildings in a single bound) or Spiderman (his spidey senses tingle when he senses danger just like mine when I enter a building with the 'wrong type' of fluorescent lighting) but merely a spoiled, attention seeking play boy brat, the product of non-existent parenting. (He was raised by his rather odd English butler after his parents were killed in case anyone is wondering.) I might have come off looking almost as bigger moron as Michael Savage! ;)

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  3. Thank you for saying this:

    "What does matter about this, about the Savage view of autism, is that it discourages tolerance in a world where tolerance is so scarce already. What hasn’t been as widely recognized is how the language used by autism charities and others calling themselves advocates has contributed to the slippery slope down which the filth of Michael Savage’s words came sliding. How can people accept “train wreck,” “tsunami,” and all of the other inappropriate, harmful terms used in speaking of autism, only to turn indignant when somebody dares to call autistic children “brats?” Where was the anger at “burden” and “empty shell” and false analogies to cancer and abduction? I saw plenty of the “neurodiverse” write against these things, but what about those “advocates” who insisted such complaints were trivial?"

    I thought what Savage said really paled next to the regular abuse that the autism "advocacy" organizations like NAA spew all the time (who got 10 shades of huffy over Savage's words). NAA wanted Savage fired. Autism Speaks wanted him to be ignored and pitied...

    I want to see NAA and Autism Speaks totally dismantled (fire them all) but not before they admit the huge amounts of harm they have done to autistic people. The hypocrisy of these people is dumbfounding. Savage attacked other people's kids, NAA, SAFE MINDS, ASA, and AS attack their own children and they attack and degrade me and my ASD kid, and they've been doing it daily for years.

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  4. Thanks in part to your blog, we've made tremendous headway in my family (next goal: our school) in changing my relatives' focus from feeling sorry for my autistic 6-year-old boy, and offering to help with therapies to "cure" him, to getting them to understand that there is no cure we need pursue; that what we need to do now is help him learn a few coping mechanisms necessary to function in a neurotypical society (but gently, and with great support and affection) while simultaneously placing more emphasis on celebrating his differences and gifts (for they are many).
    In my mind, the first phase of "Autism Awareness" is over. Okay, we showed people there are a lot of diagnoses; wonderful, nice job everybody. The second phase of the Autism Awareness movement, in my opinion, will be to educate the so-called neurotypicals (like me) that we need to do some of the bending here. I hope we can get off the issue of publicizing the increase in diagnoses and start talking about how we're all going to flex and bend a little bit to accommodate each other in a future where we will often encounter persons with autism.

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  5. My hearing processing disorder is a real established neurological condition, so is my faceblindness.

    Whatever the politics of Autism these medical based side effects are very real.

    Denying the truth of the matter is a grave disservice to Autistics and the people who love them and want them to have good lives.

    ~Sarah

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  6. "It cost me nothing to assume the quacking was necessary"

    That's really the heart of the matter.

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  7. I agree with the previous commenter. When I read "It cost me nothing to assume the quacking was necessary" it really hit me right in the chest. This is it, exactly.

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  8. I'm waiting for what Camille is waiting for...

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  9. See, things have been Busy while you were out. (Not that it matters that much, but Yeyuz.)

    Maybe the young men were doing their impression of the bud wei ser frogs?

    Patrick

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  10. It is always a great pleasure to hear your view.

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  11. I keep thinking it's a shame Mr. Savage didn't listen to his father. He's a fool, and sounds like an idiot.

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  12. Thanks again for combatting the denial of our existence...Savage is what I thought many NT's might think of me if I would tell them that I am on the spectrum. To hear it said by him with such blatant disdain and cruelty is disturbing. To hear your words allows me to reframe the ignorance spouted by Savage in a more understandable way. And also to examine much more thoroughly the depth of ignorance in other areas of society.

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  13. People are so worried that their kids might be autistic, when what they should be worried about is that they might turn out like Michael Savage.

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  14. Michael Savage is only trying to provoke people on purpose. That's part of his job to get people to react.

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  15. Wow. Thank you so much for posting this.

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  16. Brilliantly stated: "words in a traffic jam that won’t clear up until the emotional rush hour has passed.". -thanks Bev.

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