No One's Ever Going to be Endlessly Alive

When I was younger (i.e. until like a year ago, let's be totally honest) I used to think that I should become a rock star because then I could move as much as I want and no one would notice. But then when I make videos like this I spend the entire time being like "STOP TOE-WALKING YOU LITTLE CREEP!" Because unfortunately it turns out there is some sort of divide between what looks DD and what looks like someone who just really likes music (and is awesome).

Disclaimer: I know that if you're a Diagnosis Police Officer you will be like, "There isn't any toe-walking in this video! You're the most made-up Autistic person ever!" That's because I'm trying not to. I mean, I know I shouldn't try not to, but I do, and maybe as I get older I'll be less of a twerp about this stuff.



I think I can't stand the way I feel
I can smash in all the doors but it's not real
And I know, I know, I know, I know how you feel
I know, I know, I know, I know it's not real

I think I can't help the way I am
You can hate it all you want but it's the same
And I know, I know, I know it's just how I am
I know, I know, I know we're not the same

I'm not real and that's okay
I'm really calm with my place
Remember, you are always tender
Remember, it doesn't mean what you think

Because no one's ever going to be endlessly alive

If my palms are the only sensitive parts
I have left I will scrape them on all the doors
'Cause I know, I know I've got to squeeze it out
The rest of me, I'll use it till it stops

I'm not real and that's okay
I'm really calm with my place
Remember, you are always tender
And remember, it doesn't mean what you think

Because no one's ever going to be endlessly alive

I think I can't stand the way I feel
I can smash in all your doors but it's not real
And I know, I know, I know, I know how you feel
But I know, I know, I know, I know it's not real

Good Behavior and Psychoanalysis

Jelly told me about this person named Smockity Frocks who is a Christian homeschooling blogger and apparently never heard of disabled people before in her life. She took her post down and replaced it with a link to Autism Speaks (of course, because it's better to eradicate people with disabilities than treat them with charity and understanding) but it's cached here: http://docs.google.com/fileview?id=0B5C2Ta2YGCfTYmRhOTliZTUtNjQ5ZC00MmNjLWJmYzItNWU5MjNlYzU4ZTc3&hl=en

Basically, her post was about how she was at the library with her kids, READING THE BIBLE (for some reason that's my favorite part), and this other kid was waiting for the computer that SF's daughter was using. The other kid got very frustrated by waiting and started flapping her hands and saying, "I'm being really patient," to which her grandmother would reply, "Yes, you're being very patient, soon you'll be able to use the computer." So SF made a post about how no one understands how to treat kids anymore, and this kid was majorly spoiled and wasn't actually being patient at all, or something.

Then a bunch of people commented on it and were like, "This kid obviously has ASD and you fail at being Christian." Smockity Frocks was like, "Well, her grandmother should have made her read a book instead." Then the other people said, "That might not have worked with a kid who has ASD," and it all climaxed with Smockity Frocks declaring, "Well, YOU'RE not being very Christian YOURSELF, because what if I have a disability that keeps me from being able to tolerate kids who are BRATS??"

Oh, boy. There is a collection of response posts here from people whose kids have disabilities: A Message for Smockity Frocks. I haven't read them all but I like Kristina Chew's post a lot. Jelly also wrote a post, which is really good: Oh the joys of judgmental people. From my not especially thorough skimming, it seems like Jelly is the only ASD person who has written a post.

This was striking to me because I've been having a lot of trouble with waiting lately. I've said I've been having shutdowns but that's not really true because they're not really a state of bluntedness or distance, which is how I think of shutdowns; at the same time I don't want to call them meltdowns because I don't actually do anything. They're like proto-meltdowns, and they happen in situations like this, when I'm waiting for something to happen, or something to be over, and I get so tremendously agitated that I feel like I'm going to have...well, a regular meltdown. Which isn't practical since I'm 21. To stop it from happening I start trying to scratch myself with pens and stuff.

I'm sure that if someone looks around the room when a class is running long and sees me gritting my teeth and scratching my arms with a pen, it probably looks to them like I'm being a jerk and trying to tell everyone how much I don't like the class, but this isn't the case. Trying to judge other people's morals is a terrible idea, and CS Lewis explains this much better than I can in the chapter of Mere Christianity called Morality and Psychoanalysis. (I think this chapter isn't that specific to Christianity and can still be useful and interesting if you're not Christian.) CSL points out that you don't know what is happening to a person inside and it's not fair to just judge them by what they do because you don't know what they're fighting against.

[Note: I know that CSL equates homosexuality with having a phobia of cats. I think this is actually pretty charitable given his time period and culture, because he understands that a person can't help being gay and a gay person can be moral, or at least move in a moral direction. Obviously your mileage may vary, but I think he has a good attitude given his raw material.]

This is part of why instead of saying "high-functioning," "low-functioning," etc., I like to say "severely affected," "mildly affected," and so on. This means that instead of thinking about what the person appears to be doing, I'm thinking about what they are working against or around. This seems like a fairer and more accurate way of thinking about people.

The greatest story ever told: At the ASD school where I interned last summer, they used to take the kids on the subway. A lot of the kids had trouble taking the subway and their aides would try to make things easier, for example they'd hold a big clipboard in front of the kid showing how many points the kid was earning by being well-behaved. Also some of the kids would wear iPods on the subway.

Another thing that made the experience easier was being able to sit down. If people didn't offer their seats to the kids, the aides would sometimes ask. Apparently, one time they asked this woman if she could move over so one of the kids, who not only disliked standing, but also had a cold, could sit down. So she very slightly moved over and sat there glaring at the kid, who was squished in next to her. AND THEN HE SNEEZED ON HER FACE.

I wanted to tell you this

I am going to counseling on Friday but I've basically thought that there's something wrong with me because I'm experiencing constant derealization and frequently I have to concentrate to keep from screaming/crying about something that ordinarily wouldn't be a big deal (waiting for a sandwich, waiting in line, waiting for a class to end). This started a week ago. Well, maybe it happened before, but I noticed the day I shaved my eyebrows. For periods I have thought "oh, it's getting better" but they're only periods. It's not permanent. I can hardly understand what people are saying sometimes, it just looks like a bunch of colors.

I got scared that I was going to be a person who loses skills.

Fortunately I saw Noah who is going to be a psychologist and is basically a joy, and I told him and showed him how much I have to press on my hands with my fingers all the time in an attempt to keep myself inside, and how I feel like I'm constantly in a state of yammering "I can't believe I'm alive, I can't believe I'm alive right here, right now" (this sounds nice but it's not, not all the time--derealization starts out seeming really fucking spiritual or something, but then you're like, shit--I can't do anything when my brain won't stop telling me I'm alive, I can't even feel God because I'm stuck in a creepy spaced-out box of my distinct moment and place).

Anyway, I was talking about how scary and weird it is to find out that something's been wrong with me ever since I came back from the UK--I mean, that must be it, because I'm taking like no classes, two of the four only meet once a week, and Noah was like, "what about your workload?" and I told Noah my workload and Noah was like, "That's a ton of work."

And I was kind of shocked. But like, I think it might just be a ton of work. Maybe I can't get anything done because there's so much to do.

In other news: I think everyone thinks that they like sex too much. Well, I mean, obviously some people are asexual. But I think you can even be asexual and think that you like sex too much. Or think that you want a girlfriend or boyfriend too much. Or that no one eats as much junk food as you do or does as little homework as you do or is as ugly as you or smells as bad as you're afraid you smell. And I think this is especially true for ASD people because we are trained to think of ourselves as deviant and overly intense--but it probably is the case for a lot of other people, too. I just wanted to tell you this because I thought of it later.

the blog schism

so I always feel bad when I post about my dumb attempts to give myself a haircut or something, and/or evidence of Vincent Kartheiser possibly being a baby llama pretending to be a person--however, I never want to post anything on my 5-year-old livejournal, because there's way too much boring/annoying stuff on it, and even though the haircut stuff is not exactly important, I think it's too entertaining to be on the Awful Livejournal, so it has a new home:

[deleted 8/9/10, not doing that tumblr anymore]

in other news, my weird shutdown that started Monday is sort of coming and going. Is that even possible? My head just always seems to be hurting and sometimes I take such a long time to understand anything and can't think anything through. There have been some moments of not-shutdown, though.

I'm going to go to Student Counseling. I just feel stupid because I'm presumably traumatized from going to another country where I didn't talk to anyone? I just feel embarrassed because some people have real problems. But when I really think about it, as long as all the appropriate sensory factors are in place, I haven't really had sleep problems for several years. And now I wake up in the middle of the night on a regular basis, often feeling really freaked out.

Sorry this is navel-gazing. I actually am going to try to be pious/academic and not post on here. And when I do, thanks to the tumblr sublimation, it's always going to be these really serious and in-depth disability-related posts! It's going to be amazing!