Topic sentence-->mission statement

Of course I was reading about the DSM on Wikipedia, and found out about a new diagnosis called Sluggish Cognitive Tempo. This sounds pretty much like a description of the ways that I think ASD impairs my ability to get stuff done. I'm not saying that I was misdiagnosed with ASD and really have SCT; I have some ASD symptoms that aren't included in SCT. I guess SCT-ish stuff can be part of ASD, as with Sensory Processing Disorder.

As usual, it makes me feel weird. If this blog had a topic sentence it would be "I'm super high-functioning but not like those other high-functioning people." I know that saying high-functioning is considered really offensive etc., but I feel like I need to use a word to describe what I'm like, and I'm not saying it as a judgment on other people. I think that judging people for their "functioning level" is one of the most hateful things you can do. What I'm trying to say is that I currently get by without services for my ASD, and expect that I always will. I got some services when I was a kid but I would have gotten by without them. Things would have been worse but I think I would still have been able to go to college and eventually make friends, just slower. I feel like the worst thing that could have happened to me would have just been that my life up until the age of eighteen would have been shit and I would have entered college as a very frightened person who self-injured a lot. But I would have entered college, is what I'm trying to say. (By services I largely mean going to a small private school where a lot of kids had learning disabilities and outright bullying was rare. It's hard to explain to people if I was in special ed because I don't think of my high school as a special ed school, but it kind of was, and it helped me a lot in terms of learning some methods of doing homework and talking to people.)

Anyway, I feel alienated by the word "Asperger's," because as I've previously mentioned, I feel more comfortable with the labels developmentally disabled or developmentally delayed or PDD-NOS. I am more high-functioning than the stereotypical person with Asperger's; I can sometimes talk to people without them noticing anything, I have satisfying friendships, my special interests are not that intense and not at all apparent (I think--I manage this by reading blogs and forums about them instead of trying to have conversations about them). The areas in which I'm not high-functioning are not stereotypical Asperger's problems of being an obnoxious nerd.

This is why Francisco Hernandez Jr. has (somewhat creepily) become an iconic figure to me, sort of the mascot of this blog. What happened to him has to do with getting overwhelmed and retreating and fading out. This is what happened to me for the first few months that I was writing this blog. I just called it "I'm somewhere else" because I was studying abroad, but then it ended up being a description of my mental state while I was abroad. A persistent, sometimes fascinating, sometimes horrible absence. I can't remember if I posted this at the time, but at one point I kept wearing the same jeans long after they needed to be washed because I was too depressed to work up the energy to change them.

I'm not active and odd. I'm passive and odd. And I'm not really as odd as I used to be.

I am excited about the DSM V because I feel like they describe a kind of ASD that can actually fit me.

Because I feel so alienated from the mainstream face of Asperger's, the topic sentence of this blog can be further developed into a mission statement, which is "Just because a lot of people are making dumb movies about people with Asperger's, and just because someone thinks we're good at making rocket ships, or whatever, doesn't mean that we're actually that different from other developmentally disabled people, or that we don't owe them anything."

heroes

1. Danny for not being modified.
2. Henry Darger.
3. Francisco Hernandez Jr. for not being made of stone.
4. Noah, a boy I went to camp with when we were 15 and 17, who would carefully and nervously look at everyone and apologize. Once, I saw him look around and find a box of Kleenex for a girl who was crying. I was proud like he'd scored a home run.
5. Shawna, a kid in Lorain County who I met when I was 19, but with any luck will be seeing again soon. Shawna has an aide who is always saying "I don't know what's wrong with Shawna today." But Shawna continues to come up to people and clamp her hands on their hands, and stare at their collars and shoes. She's a lover not a fighter, I mean love is her war.

this is old news but I'm just writing it out for myself

I call myself ASD both because I have multiple diagnoses (PDD-NOS, Asperger's, and Nonverbal Learning Disorder) and because I don't believe there is a quantifiable difference between PDD-NOS, Asperger's, Autistic Disorder, and NVLD. This is not to say that there aren't vast differences between ASD individuals; there are people who are verbal and people who aren't, people who are prone to violence and people who aren't, people who are extremely upset by loud noises and people who don't care that much. I could go on forever--obsessiveness, form or presence of stimming, executive function, feelings about being touched. And passing, of course. Plenty of these differences are super important when you think about the kind of help the person might need. But calling these differences NVLD, Asperger's, PDD-NOS, and classic autism (or, more commonly, Asperger's and autism) is messy and impractical. If every ASD person is just one of those four things, then why do I have so many diagnoses, and how come people often call themselves (or are called) a different diagnosis than they actually have?

If you aren't familiar with this, it often comes in the form of verbal people with autism or PDD-NOS diagnoses being called or calling themselves "Asperger's," or nonverbal PDD-NOS people being called "autistic." Also, I have noticed that when people with Asperger's do things that seem "low-functioning," like what Francisco Hernandez did, they are more likely to be referred to as "autistic" in articles. Because Francisco doesn't talk much and his problems are more about anxiety and dissociation than they are about the stereotypical idiot-savant obnoxiousness, he is not being called Asperger's as much as he would if he'd, say, been kicked off a subway for talking nonstop about calculus. I took a class on ASDs and the TA described Asperger's as "active and odd" with classic autism as "passive and aloof." These different labels divide ASD people into verbal, obsessive, active, annoying, gifted (i.e. they don't really have it so bad?), and nonverbal, "without skills," passive, blank, violent, etc. But it should be obvious from how much everyone fudges these labels that one label is almost never enough to describe a whole person.

Like Francisco, I'm pretty passive; I struggle with executive dysfunction and shyness more than I exhibit grandly inappropriate social behavior. (Although I guess this hasn't always been the case.) But of course I'm verbal, and (I think) I pass very well. I guess passing means I'm high-functioning so I should be called Asperger's. But Asperger's makes me think of someone noisy and argumentative; actually, Asperger's makes me think of someone male, someone cold, someone confident, lots of things I'm not. So I then want to fuck around and say "developmentally delayed" or "I'm young for my age" or "I have a processing disability" or "I have a brain disorder that does such and such" (and then I just list whatever symptoms are relevant right then).

But fucking around is tiresome. But Asperger's sounds wrong. But PDD-NOS is maybe an exaggeration because I was so young. And NVLD seems like dodging the issue by using a term that isn't associated with ASD (in fact, I'm pretty sure it was invented just because people didn't want to admit their kids had ASD).

And besides, why should I have to fuck around? What would be so bad about just saying I'm an ASD person who is verbal but has some speech processing issues, a lot of executive function problems, some social anxiety, a lot of stimming, no big sensory issues anymore, and decent if atypical social skills? Isn't it stupid to even indulge the idea that some people are Lower Functioning Across the Board (with functioning meaning about eleven different things), and aren't all these labels kind of stigmatizing to Kanner/some PDD people and simultaneously implying that AS/NVLD/some PDD people aren't really disabled, and are just sort of cute and annoying, and don't need that much help? And that we shouldn't care about each other? Whatever. So anyway, I call myself ASD to avoid inaccuracy and to express my loyalty to all kinds of different humans.

When You're Spastic & It's Serious

Francisco Hernandez, you're my hero
you rode the subway from one to zero
when police officers and teachers are gone and dead
I hope all your favorite images are still buzzing in your head

like trains in the night you will find yourself all right
deep underground where you are safe and sound
and no one looks at you 'cause they're going somewhere too
and the map in your lap is the only place you've found to be loved

Francisco Hernandez, stay in school
redeem yourself with genius, holy fool
and if you ever make the cut, there is nothing there for you
when you're spastic and it's serious, they don't know what to do

so take off and fly in the shuttle in the sky
the mess in the dirt, the quilt that is the earth
your peanuts and the wings on your lapel, little things
that hold you to yourself when your mind is smashing through the sun

It isn't funny 'cause it's sad
it's funny because no one's mad at you now
take off your sneakers, leave them on the kitchen floor
and wrap yourself in sheets

And

About the New York Times article: it was pretty good. I liked that they focused on Francisco's experience and didn't emphasize how difficult it was for his family. The picture is really weird though; why did they have to use a picture of him playing a video game and therefore looking (because you can't see the game) like he's staring into space? There must be a picture of him smiling at Christmas or something. I mean, I understand why they like to have pictures of people doing everyday things, but it just seems kind of othering to use a picture where he has an expression like that.

The coolest/saddest thing ever

this morning I was talking to my friend Ralph when I left to get a soda. When I returned to my computer Ralph had gone to bed (he lives in California). Before signing off, he'd written:

so two asperger things
8:54 AM 1. a guy in my program has it and everytime I talk to him I remember that and go "FUCK! I WANT TO HANG OUT WITH AMANDA"
2. DId you hear about the kid who ran away from home and spent a week living on the subway in NYC?

I had not heard! But I have now. The kid is named Francisco Hernandez Jr. and he lives in Brooklyn. He's 13 and was diagnosed with Asperger's three years ago. When he's under pressure, Francisco (in the words of the doctor who diagnosed him) "freezes in confusion because he does not know what to do or say." On October 15, he was yelled at for not completing an assignment, and the school called his mom. When Francisco called his mom to say he was coming home, his mom told him that she wanted to have a serious talk with him. He was so anxious that he got on the subway and continued to ride the subway for 11 days, using his bag as a pillow and using the ten dollars he had on him to buy junk food at subway stations.

His parents feel that the police didn't work hard enough to find Francisco because they are immigrants and didn't "understand how to manage the situation [or] speak English very well." A detective told his mom that Francisco was probably staying with a friend--but he doesn't have any friends. Francisco says he "stopped feeling anything" while he was riding the subway. When asked what he thinks about the fact that no one noticed him or talked to him for eleven days, he said, "Nobody really cares about the world and about people.”

This story is both the saddest and the coolest thing ever. Like many ASD people, I love trains, and living on a subway train is the kind of thing I made up stories about when I was a kid, writing up elaborate plans of how I'd survive. Francisco has accomplished a feat of E. L. Konigsburg proportions. There's also something iconic about the unselfconsciously gloomy statements he made to the New York Times--"nobody really cares about the world and about people"? I'm pretty sure he could become the next Edward Scissorhands or Jeff Mangum.

But while it's nice to imagine Francisco bragging about his adventure to his friends when he's 19 or 20, the time when this will be just an awesome story is a long way away. The time when Francisco will have friends is, probably, a long way away, and I bet it seems so far away that he doesn't believe it exists. He said he was planning on staying on the subway forever; he lost all sense of time. I think people lose their sense of time when they think that things are so bad they'll never change.

The words "eighth grade" are the two most painful words in the English language, at least for me. But I still believed in a better future, sort of; not with all my heart, but enough that I didn't try to disappear from life altogether. I held on. It breaks my heart that Francisco didn't believe there was anything to hold on for, that the world was just too scary for him to stay.

I want to write him a letter. I want this period of his life to be over. I want him to go the school where his doctors want him to go, where he can be with other kids who have disabilities, instead of staying at the school that claims he's doing fine but terrified him into disappearing for two weeks. I just want him to be older, playing video games with his friends and saying, "hey, did I ever tell you about the time I ran away and lived on the subway?"