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It’s 10:18 PM. Do you know where your Single-Sentence Saturday is? November 22, 2008

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My biggest fear is that I’m doing things completely wrong and nobody’s telling me.

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A chance encounter October 22, 2008

Posted by speakingaut in interaction, social.
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I think I met another autistic person on the way home from work.

I had just pressed the button to cross the street when I saw him. He was about halfway across the smaller cross street when I noticed something funny: this man was walking like I do. He was paying attention to each step he took, as if he’d lose his legs and feet if he lost awareness of them. For a moment I thought he might be drunk — I’ve been accosted before by security types who think I’m drunk because of the way I walk — but discounted that fairly quickly. He was too centered, too aware. Most people, when drunk, try to act sober, and I never felt that from him.

I might leave it at that — “Oh, he could have been autistic, but he’d probably just had a bit much to drink” — if not for what happened next.

He made it to my corner. Neither of us tried to make eye contact, but we both acknowledged the other in our own ways. (I smiled. He nodded.)

He stopped. It wasn’t a very fluid motion — more along the lines of “oh crap, I almost forgot my keys” than a premeditated stop — and spoke.

What exactly did he say?

Not “H’lo there.”

Not “Cold out tonight, isn’t it?”.

Not any of the small talk one might expect from a stranger on the street at 10:30 PM.

What did he say to me?

“Nice red coat.”

And then he started walking again. Didn’t even give me a chance to say “thank you.” (That would have been — was, since I said it anyway — the correct response, right?)

That’s what made it for me. The first ping on my aut-dar I’ve had in a long time.

Of course, we didn’t do the secret handshake, so I’ll never know for sure if he’s truly on the spectrum or if I’m just making stuff up.

(There really ought to be a secret handshake. That would make life so much easier.)

Frustration. September 15, 2008

Posted by speakingaut in interaction, language, social.
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So, a bunch of people on another site are discussing autism right now, and there’s one person who, while through the rest of the discussion is being very sensitive and understanding in her attitudes, keeps talking about “real autistic people” versus people on the less classical end of the spectrum.

For several reasons — not the least of which being that I really don’t feel like defending the fact that I exist right now — I pointed out how condescending the phrase sounds and then I left. I know it’s most likely either a linguistics issue (where she doesn’t know the right term and is compensating) or a matter of not realizing the impact words can have, but it’s still bugging the crap out of me. And being the person I am, I’m going to have it bug me for the next few days unless I get it out of my system now. So:

AAAAARGH.

(In other, unrelated news, I have a cat scratch on my left hand such that it hurts to move my little and ring fingers on that hand. It makes typing fun!)

Social Stories and airplane trips September 11, 2008

Posted by speakingaut in interaction, medical, social.
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One of the blogs I follow regularly is called Parent Hacks. It’s full of parenting tips and shortcuts, and while I’m not a parent, there are enough children in my life that I can use the tips. A tip that was posted today caught my eye, since it’s geared toward parents of autistic children: “‘Social Stories’ coach kids through transitions and new situations.” There’s evidently a specific way to write them, but I’d tailor it to the needs of the child or children I’m writing for.

The post also links to a collection of examples.

I remember when I was little, I was really nervous about new situations. It really helped when people explained to me exactly what to expect when, what counted as “normal” and when I should ask for help, and addressed any other questions I had. I also remember asking many of these questions several times. Considering that I started reading when I was two, it might have been easier to have things written down. (Come to think of it, I think that did happen a few times.)

I’m still nervous about new situations, of course, but it’s less paralyzing now, and the good thing is, I can do my own research now. If I go in for a medical procedure, for instance, I read up on what exactly to expect. And one of the requests I make of any doctor who treats me is “please let me know what you’re going to do and what it’s for before you do it.” Nothing turns me off from a doctor faster than being surprised by something simple.

A different example: When I was six or seven, I went to Disneyland with a close family friend. While I’d been on airplanes before, it had been when I was a baby, and if I remembered, the memories were spotty at best. When it came time for me to leave, I was terrified. I had a basic idea of what would happen, but nothing measurable or specific. It certainly didn’t help that when the friends I was with showed me a map of the United States, they joked around by pretending our route took us on a looping course around the country, but I couldn’t have done anything about that.

(No social story could have prepared me for losing one of my favorite shoes in the Pacific or having the plastic toy sword I’d bought at the Pirates of the Carribean gift shop confiscated at airport security, either, but that’s another story.)

Of course, now I understand what’s going on and what to do in what situations, I am the family’s second most fearless flier. I’ve been in one of the world’s largest airports, in a country where I don’t speak the language (aside from a few choice words I can’t repeat here), on a flight that landed twenty minutes late, with only the vaguest of instructions on where to go next, and I’ve made it to the rendezvous point on time.

But the beautiful thing about liking to know what’s going to happen before it does is that I was able to pay it forward. One time, I was flying solo. The plane I was supposed to be on had just landed and its passengers were disembarking, and the little boy who was across from me at the gate kept asking his mother what was going on. His mother kept saying she didn’t know.

So I braved the whole “talking-to-strangers” thing, and once I got permission from his mother, I told the boy that the plane had been full of people who wanted to come here, and now that it was empty, we needed to wait for people to clean it. I told him that they were going to put the checked luggage on the plane and call the passengers up in groups, and that once he was in his seat, he should put his seatbelt on and listen to the instructions the cabin crew gave. I even told him he could wave at the pilot on the way out of the plane.

The kid’s response?

“Oh. That’s cool.”

So yeah. This works with (presumably) neurotypical kids, too. As a rule, knowledge reduces fear.

Even if you don’t have time to write stories yourself, there are books already existing that are extremely helpful. I remember reading a series of books by Fred Rogers that dealt with first experiences, and the Berenstain Bears are classics by now. (I have no knowledge of what the newest ones are like, but I have fond memories of the ones that were in print when I was a child.)

In conclusion: Man, that’s a longwinded way to say “ooh, these things are a great idea.”

Bride of Single Sentence Saturday. September 6, 2008

Posted by speakingaut in outside looking in, single sentence saturday, social.
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Three times this week, I’ve wanted to be able to give it up and just be like everybody else for once.

On self-advocacy, feminism, and teamwork. August 29, 2008

Posted by speakingaut in advocacy, politics, social.
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(This post is the reason I’ve not posted all week. I’ve had it stewing for that long. It’s going to be slightly more political than my norm, but not in a “vote for $PERSON!” kind of way.)

Autistic self-advocacy, even in the collective sense, is not enough.

Don’t get me wrong. I love it. I really do. (In particular, these guys are just awesome.)

The problem is credibility in the eyes of the general neurotypical public. No matter what we say, or do, we’re not the ones who make the laws. Autistic people aren’t going to make up the majority of the human population. Even if every autistic person in every single agreed on every single issue, we’d only make up 0.6% of the voting and lobbying public. That’s not enough.

I’m not saying we have no voice — if I believed that, I wouldn’t be writing — but that we don’t have the numbers to succeed on our own.

Politically and socially, we need neurotypical people. Right now, the autism advocacy groups that are run entirely by neurotypicals are the ones with the money. They’re the groups that have the political clout to do big things.

Right now, autistic advocates are seen as a “splinter group.” In the Good Morning America spot on the neurodiversity movement last May, the anchors were absolutely amazed at the very existence of autistic people who don’t want to be neurotypical.

We need to work with these groups, become part of them. Have any autistic advocates tried to join Autism Speaks and get elected to their board? One person joining it probably wouldn’t be able to enact change. Neither would two, or five, or ten. But if enough autistic people work with them from the inside, maybe something useful could get done. But it needs to be a group effort.

Don’t get me wrong. I don’t at all condone the work Autism Speaks currently does. But I believe that as long as they exist as they are, they’ll be able to discredit us, and right now, they have the brute force to do that in the minds of a lot of people.

It reminds me in many respects of feminism in the last century. In college, one of my classes studied the rise and fall of the feminist movement in western society. The professor made one excellent point early in the course: he said that when there was just one main point of contention — women’s suffrage — the movement was unified and remained strong until it achieved its objective, but that once there were even more causes covered by the term “feminism,” the movement splintered and weakened. It didn’t have a single point to push at and weaken its opposition. It tore itself apart. Can women who oppose abortion call themselves feminists? What about women who support pornography? Or women who choose to marry right out of high school? (The answer: Yes, but there will always be a bevy of other feminists saying they shouldn’t.)

On the one hand, it’s good because we’re able to discuss these things. On the other, it’s bad because it’s that much harder to get anything done.

Nancy Pelosi was recently in town, and in a talk she gave at the world’s best bookstore she said that the moment she knew she had “made it” was during her first meeting with the President and his staff as Speaker of the House. Pelosi, The President, the Vice-President, and a handful of other staffers were sitting at the table, and she described a feeling of being “crowded.” She said she felt that Elizabeth Cady Stanton, Lucretia Mott, Susan B. Anthony and the spirits of every other woman who’d fought for this behind her, saying “It’s about time.” But it wasn’t that story that got to me; it was what she said afterward. (And here I’m paraphrasing because I’m working from memory.) She said, “And I didn’t get into that room because I was a woman. I didn’t go up to my fellow representatives and tell them to vote for me because I’m a woman. I did it by doing the best job I could possibly do and letting my work speak for me. They chose me based on what I’d done and on what I promised to do.”

She’d endured being ignored in her early weeks as “the most junior representative” whom nobody recognized. Even as recently as twenty years ago, her male colleagues wouldn’t ask her for input, even conversationally. Even when they were talking about childbirth. But she didn’t give up. She worked to change the system from within the system. And she did the best work she could possibly do, and look where it got her.

That’s what we need to do, people. The principle is exactly the same for us as it is for modern feminists. It’s the other major point that stuck with me from the class I mentioned above: Ultimately, it’s always been the feminist groups that worked with men as equals rather than discounting their power who have made progress in the world.

What we need to do is either get a large number of autistic people to join one of the existing advocacy groups, or start a new group side-by-side with neurotypical people. I recently spoke to one neurotypical parent of an autistic child who said she felt demonized by the autism rights movement. This shouldn’t be our intention, people. If we drive neurotypical people away, all we do is make ourselves an island. It doesn’t liberate us; it traps us. This should not be an us-versus-them situation. Her concerns are just as valid as mine. So it comes down to a choice: do we stand in our separate corners and pull apart, or do we find what is common in our cause and work together to achieve it?

The only people who are going to “mainstream” us is ourselves. And we can do that in many ways, but ultimately it all comes down to being a part of this world to the best of our ability, however much that is. It means voting. It means doing what you want and need to do, even when you know people are going to stare. It can mean juggling oranges in the produce aisle, if juggling is your thing. The specifics don’t matter. The point is, being autistic in a world full of neurotypicals doesn’t have to mean losing oneself. They’re going to have to adapt, and so will we. So why not do it together, so we all at least know what to expect?

Single Sentence Saturday — Today’s a twofer for the first day. August 23, 2008

Posted by speakingaut in single sentence saturday, social.
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I can be such a total idiot when I know I’m right.

Musings from the 42 Limited August 22, 2008

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Riding the bus makes everybody a little autistic.

There’s the woman in the back who’s so engrossed in her book that she misses her stop… and the next one… and the one after that… and ends up getting off a mile later than she’d intended.

There’s the woman in the other corner who’s been on the bus for an hour already. She’s not going anywhere in particular, but is just in it to watch the people.

There’s the man anchoring himself to a pole in the aisle because he doesn’t want to sit next to someone he doesn’t know.

There’s the woman pressing her face against the window, staring at the patterns in the road.

There’s the man who’s rocking just a little bit more than the bus itself is doing.

There’s the oddly-dressed teen in the front who smiles at everyone who enters and is still waiting for someone to smile back.

There’s the man who doesn’t reply at all when the driver asks if he wants a transfer slip.

There’s the small child who breaks free from his mother to talk to a formidable-looking man about his collection of bugs. Even when said formidable-looking man is obviously uninterested and uncomfortable.

There’s the one person everybody else pretends not to be staring at, and the one person everybody else sees but doesn’t really notice.

(Guess which of these people is me. Whichever one you pick, you’re right.)

On pretense August 13, 2008

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“Everybody lies.”
— Gregory House

I don’t do pretense, and while I acknowledge that not all autistic people are the same, I’ve never met anyone on the neurodiverse end of the spectrum who does.

If somebody acts angry at me, I’m going to believe they’re angry at me, regardless of what they say. Apparently it’s a bad habit to do that.

I don’t do that “Oh, and call your aunt Mimi to ask about that cake pan she left, but while you’re on the phone, make sure to find out if she’s still dating that guy” stuff, and wouldn’t even if I liked talking on the phone. Apparently this makes me antisocial.

If your new dress looks really awful on you, I’ll tell you so. I’ll do it politely, of course — less “that dress makes you look like a diseased cow” and more “black and white really aren’t your colors” — but I’m not going to say you look great if you don’t, either. Apparently this makes me even more antisocial.

I rarely played dress-up or “Let’s Pretend” with the other children. Apparently this means that I have no imagination. Never mind that I spend that entire time imagining all sorts of stories and using the imagination I evidently don’t have to figure out all sorts of things about the world.

I understand seeing lying as a cognitive milestone, for both NT and ND children. Lying requires knowledge of the truth (Oh crap, I broke Mom’s favorite vase), the ability to construct a story to cover the current state of things (but what if I say my sister did it instead?), and the cognitive ability to weigh the risks of telling the lie with the risks of telling the truth (if she finds out it was me, I’ll be in trouble, but if she believes me I’ll be home free). It takes some pretty big stuff.

But that doesn’t mean we should encourage it when we see it.

And you know what?

It’s the very fact that we do encourage it that I don’t believe you when you shout at me and then tell me you’re not angry.

Echolalia August 5, 2008

Posted by speakingaut in language, social.
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Echolalia is one of the most important elements of spoken language. If you think I’m wrong, just think of how most parents react when their babies start babbling.

It’s also one of the markers for autism spectrum disorders.

The first time anybody suggested that I might be on that particular spectrum, I was a little kid, and one of the reasons that the diagnosis got deferred for twelve-odd years was that I hadn’t exhibited echolalia in the way she had expected.

Of course, I never do anything the way people expect.

So here’s how it works with me:

-I repeat myself. There’s a set of stock words and phrases I use — some would say overuse — in conversation. It especially comes out when I’m uncomfortable. Think of it as a stronger version of “so, how ’bout them Yankees?”.

-I pick up the linguistic foibles of other people. Add this and my oddly-shaped sinuses to the fact that I have family thirty years removed from New England, and somehow I have waitresses complimenting my Canadian accent.

-I do impressions. Kind of. I’m horrible at doing specific impressions — which is really odd, considering point 2 above — but I can repeat the words and tone of lines from video media extremely well. Once I’ve heard it a few times and have it memorized, that much is easy for me. My favorite dramatic warm-up is the one where people pair off and start imitating each other.