as if inside our skulls, instead of the brain, we felt a fish, floating, attracted by the Moon.

Saturday, July 3, 2010

Autreat, Autism Speaks, Blah blah blah

Disclaimer: This is a really long entry. Sorry.

So I just returned from Autreat, a sort of "autistic retreat."

I met plenty of interesting people and promptly forgot their names.
One of the many things I observed were the apparently stark differences between myself and those with more pronounced symptoms (I would say "low functioning," but I've learned that many regard that as an offensive term). What was curious about that aspect of my time there was that I can see myself so clearly in these individuals.

As I explained to Steve Silberman of Wired magazine, to an outside observer, it would appear that someone like me is very different from those further along the spectrum. I pride myself in my ability to the imitate speech tone and inflection, body posture, gesticulation and facial expressions of "neuro-typicals" (though I hate that term; no one is truly "NT" in my opinion), whereas many people at Autreat were much more noticeably autistic. Lack of tone variation, expression, coordinated motion, etc combined with what is referred to as "stimming" and verbal tics make many autistics stand out from the crowd, so to speak.
This is the reason people like me (high functioning autistics, aspergians, or whatever term you want to use) often go undiagnosed.

However, autism really is a spectrum deal. Many of the traits that are thought of as classic "low-functioning" autism are traits that I share, just to a lesser extent. I "stim" quite a bit, though I save the obvious stuff for when I'm alone (bathroom breaks, red lights, etc). Anyone who's spent time around me knows that I can't help cracking my knuckles, playing with my hands, rubbing my palms up and down my thighs as though I'm cold, squinting my eyes tightly and blowing air out my nose. These aren't nearly as odd as hand flapping, hence the necessary bathroom breaks. The squeaky wheel gets the grease, and public hand flapping, or spontaneous moaning and squeaking noises warrant attention.

And even though I am able to imitate inflection and expression, there's a substantial difference between my communication and the communication of someone who the autistic community would call an "NT." I didn't even fully recognize this myself until attending Autreat and seeing the few NTs amongst those with ASD. The difference is astonishing.

There's a sort of flow that accompanies NT speech that even the most practiced autistic seems to lack. Voice, facial expression, body posture and gesticulation are all smoothly integrated, and seemingly as unconscious as coughing when food gets caught in the wrong pipe. Watching two NTs having a conversation is like watching a well acted film, or like music. There's a noticeable rhythm, an ebb and flow, that can't be faked. There are no breaks in the conversation, at least not the kind that accompany an autistic conversation; there are no hesitations to calculate cause and effect of an action. It's really quite amazing to watch.

The closest comparison I can think of is learning Latin. Imagine learning Latin in high school; learning to translate, memorizing roots and vocabulary, guessing at pronunciation. Then the high school Latin students are transported back in time to ancient Rome for a day. Would they be able to communicate with the Romans? Probably. Would they be able to communicate like the Romans do? Probably not. The might be able to understand a conversation, or at least the literal translation, but they would have a hard time creating a natural, native-sounding response.

I know that body language and facial expression, etc, are all obvious parts in communication, but I'm using only language here because I feel that language is a larger part of communication.
I've read over and over that non-verbal cues are "98% of communication," but personally I think that's bunk. If that were the case, deaf people wouldn't need sign language, and Ariel would have been able to woo Prince Eric no problem. Perhaps it's just because I don't even think about others' non-verbal cues, so I don't consider them essential. Perhaps it's because I'd like to think that I'm not only picking up on 2% of what people are saying to me. Though I do think that even the most charismatic, well adjusted "NT" would disagree with the 98% thing; it's probably closer to 30%.

I also learned that a large portion of the autistic community absolutely hates Autism Speaks. I understand their reasoning; Autism Speaks' method of raising donation money is to play off the pity of NTs outside the autistic community. They put much weight on a "cure" for autism, and even the front page of their site reads, "Autism prevalence figures are growing. We need answers," as though autism is some sort of infectious problem or a disease.

Autism isn't a disease. People think of it this way because it is called a syndrome, but a syndrome is "a pattern of symptoms that characterize or indicate a particular condition." It doesn't have anything to do with whether a thing is a problem or not, it's just a collection of traits shared by a group that can be named.

Autism probably can't be cured, and if it can, it shouldn't be. It would be like curing men of being male, or curing people who like high-fructose corn syrup. It's not like depression, which has only a handful of causes and a handful of effected areas. Autism effects so many parts of the brain that, to quote a classic autism slogan I'm fond of, it's not a processing error, it's a different operating system.

However, this doesn't mean that we should cease all research into autism treatment (TMS, for example). "Treatment" and "cure" are very different things. A treatment wouldn't get rid of autism, it would simply help ease some of the problematic symptoms. I can understand the autistics who take pride in their identity, but autism isn't quite like homosexuality. If you asked a gay man if he wanted treatment, he would probably ask, "for what?" If you asked an autistic if he wanted treatment for, say, sensory issues, he would probably accept. I for one wouldn't mind no longer being terrified of and made sick to my stomach by loud noises, or being blinded by normal daylight. I'm sure non-verbal autistics would love to be able to communicate. Many autistics are labeled as "retarded" despite being incredibly intelligent, simply because they have trouble communicating. If you know me, you know I'm pretty clearly verbal, but it would be very nice to figure out how to ease whatever block sometimes exists between my thoughts and my speech. I can't imagine struggling with that daily.

I think that demonizing Autism Speaks is a bad move. What we should be doing instead of protesting them is talking with them. The majority of their staff aren't autistic; they have autistic family members, but it's very different from living it. As long as Autism Speaks uses pity to raise funds, they are going to be hated by many autistics. All they need to do is change their advertising campaign. Autism Speaks is a huge organization, and throwing away a valuable resource like that without trying to cooperate is simply immature and reckless.

Day 16 — A song that makes you cry (or nearly)

Hard to Concentrate - Red Hot Chili Peppers

Hustle Bustle
And so much muscle
Our cells about to separate
Now I find it hard to concentrate
And temporary, this cash and carry
I’m stepping up to indicate
The time has come to deviate and

All I want is for you to be happy
And take this moment to make you my family
And finally you have found something perfect
And finally you have found…

Death defying, this mess I’m buying
It’s raining down with love and hate
Now I find it hard to motivate
And estuary is blessed but scary
Our hearts about to palpitate
And I’m not about to hesitate

And want to treasure the rest of your days here
And give you pleasure in so many ways, dear
And finally you have found something perfect
And finally you have found…
Here we go.

Do you want me to show up for duty?
And serve this woman and honor her beauty?
And finally you have found something perfect
And finally you have found
With me...
Will you agree to take this man into your world?
And now we are
As one.

My lone ranger,
The heat exchanger
Is living in this figure 8
Now I’ll do my best to recreate.
And Sweet precision.
And soft collision
Our hearts about to palpitate
Now I find it hard to separate.

And all I want is for you to be happy
And take this woman and make you my family
And finally you have found someone perfect
And finally you have found

All I want is for you to be happy
And take this woman and make you my family
And finally you have found someone perfect
And finally you have found…

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