Not Frozen

We saw Disney's "Frozen" on Christmas Eve, and I've been haunted by this song ever since.

It's so beautiful -- her stomp creating the ice palace floor, her gossamer ice train shrugging down from her shoulders. And so deliciously complicated -- there's wonder and delight and regret and triumph and defiance and denial all rolled into one.

But mostly, I realize, it's an Autie/Aspie anthem. The utter joy of finally being able to embrace your gifts and be exactly who you are, that's an astonishing vision. And the refusal to admit that it's not enough, and you still need other people? I know that song by heart.

Where to Put Our Support?

If you're boycotting Autism Speaks, how do you find alternate charities? Here's one personal account that offers suggestions.

The straight up Autism charities that exemplify Nothing About Us Without Us are actually run by Autistics. These are Autism Women’s Network (AWN) and Autistic Self Advocacy Network (ASAN).  Autism Women’s Network is working hard on getting together some more on-the-ground initiatives, to get money and resources back to the right people who need it. I know this because I am on the board now.  Autistic Self Advocacy Network has created a sea change in the way Autistics are able to see ourselves and come together in action, as well as carve a place for ourselves at policy tables, even at the very highest levels. This has literally changed the world for me and many people I know. I think ASAN is also looking into a grants program. Both of these groups increase our dignity and well-being every day without wasting good people’s money lining greedy pocketbooks or financing harmful ad campaigns or research into preventing us from being born. Both of these groups are bona fide what a charity should be, and growing and doing more every moment of every day with your help.

Functioning and Quality of Life

As a follow-up to my last post, this very interesting post goes into some more of the issues with assessing autistic people as high or low functioning:

For autism research, measures of success and function might better be tied to what is, after all, considered to be a core deficit of autism: social communication challenges and impairments. For people like my son, the answer to the question, “Is he high functioning?” isn’t the one the doctor probably has in mind. Yes, my son has good cognitive skills. But his ability to respond to cultural and social demands and expectations is what defines his functioning — and his autism. The doctor should really ask my son, “How satisfied are you with your quality of life?”

 We had a prime example of this recently.  My son is doing very well in piano class. His class was performing at an evening concert, and I was so happy that this was something he could participate in, with all the other kids.

We dressed up nicely, even getting him into a button-down shirt, and arrived at the scheduled time, only to discover that the concert was in progress and children were already at the keyboards and there was no empty spot. My son, being faceblind, couldn't tell if it was his class or a different class. He stood there desperately flapping, trying to get the attention of the teacher, but it was dark and noisy. By the time we established that it was his class, it was all over. And he wondered if he'd been deliberately left out because people thought he'd ruin the concert.  When you feel freakish a lot of the time, your mind tends to go to places like that.

It turned out that there were specific verbal instructions which my son missed, because he wears headphones in class. Or possibly because he spaced out or got distracted. Why his freakin' AIDE didn't make sure he got the info... in any event, the school let him down. And my son was left not feeling good about the fact that he can play piano well, but lousy about the fact that once again, everyone else knew something he didn't.

High and Low Functioning are Meaningless Terms

One of the issues highlighted for me by the recent Flashblog was the desperate need for better vocabulary around autism. We commonly use the terms "high-functioning" and "low-functioning" and it's becoming ever more clear that these terms are meaningless.

Dozens of autistic people contributed thoughtful, well-written posts about being autistic.  What we don't know -- unless they tell us -- is that some of those people are writing those posts in diapers. Or had a meltdown that left them incapable of speaking last week. Or are never able to speak at all without technological assistance.
 
Some people are skeptical about these bloggers. And certainly the potential for deception is there. But my son has a youtube channel, which I check out periodically. It's always kind of... confounding. Videos of himself show the boy I see the most -- smart, cute, but decidedly still a little boy, much younger developmentally than his biological age. Visually oriented videos demonstrate technical skills worthy of an adult. The comments he leaves are the most confounding of all: they sound like an average teenager years old than he is. They tend to be on the blunt, even rude side, but that's pretty much normal for youtube comments.

He's at his most "autistic" when he's at school, trying to process too many voices and too many unwritten rules. So was I.

This is one of the reasons I have no trouble believing that autistic adults who write intelligent blog posts are "low-functioning" in real life.  Technology and the internet make use of what are often an autistic person's greatest areas of competency, and eliminate a lot of barriers to communication. Many autistic people have a voice now. It's time to listen to them.

Autism Really Speaks

For more information on why many in the autism community are protesting against "Autism Speaks," see this joint letter to their sponsors, co-signed by numerous disability organizations.

ETA:

Have a look at Autism Speaks' Charity Navigator ratings.

Currently Reading: The Rosie Project

I started reading The Rosie Project by Graeme Simsion, which has had a lot of positive buzz, but I'm having trouble getting into it because of the "humorless, robotic Aspie" stereotype. It's not that it's never true: I know people on the net who definitely identify that way. The clueless narrator also reminds me of someone I met in real life, who had two autistic children and was desperately searching for a cause/cure, while apparently not noticing that he himself was an Aspie stereotype come to life. I didn't get a chance to discuss it with his wife, but I suspect she laughs and sighs to herself a lot.

I think Don, the narrator of The Rosie Project, is intended to be Sheldon from "The Big Bang Theory" in a possibly romantically viable way. (He wears shirts with the periodic table on them, despite not seeming at all otherwise like the sort of person who would.) I actually love Sheldon... he's not my son or me, but he has aspects of us or we have aspects of him. We gave son an easel/chalkboard/whiteboard when he was two and he used it for almost ten years, but only the whiteboard section. Sheldon is also believably anxious and prone to meltdowns, two aspects which often get left out of portrayals of Aspies.

Anyway, I don't think Don is necessarily a bad or implausible portrayal, but it's not one that resonates with me and I'm kind of tired of always seeing it. Why does nobody ever write about autistics who love hugging and puns?