Tuesday, August 31, 2010

In Which Everything Seems Pretty Awful

The fall semester has begun and my executive dysfunction is seriously bothering me.

I’m currently being screwed over by my lapse in planning during class registration last semester. At that point, I somehow thought that I could take only one history class in the fall. Upon arriving at school, I remembered that I actually need a major and perhaps I should check up on the major requirements, and I discovered that I’m seriously behind in terms of history coursework. Additionally, I kind of want an education correlate in case I decide to go into special education or a similar field.

This means that I’m scrambling to register for new classes, which takes up a lot of my time, and if I get into new classes I’ll be behind on the readings for those classes, and I’ll have to catch up, which will take up a lot more of my time.

I should have planned for this last semester. I should have known I would need more history classes. I should have signed up to get field work credit for the volunteer work I did over the summer. I shouldn’t be writing this post right now.

I’d forgotten how much work I do at college. I have to work to make myself work. This might sound frivolous and lazy, as though I just can’t muster up the willpower to overcome a hedonistic urge to enjoy myself when I should be working. In fact, if you were to check up on me while I’m attempting to make myself do work, you would find me in distress as I attempt to focus on a task but somehow always end up doing something else. The guilt and anxiety that this produces are problems in their own right, and the worse I feel the harder it is for me to focus. Can you spot a pattern here? If you picked “downward spiral,” you’re correct.

As I write this, I am looking at the pile of clothing that I have yet to fold and put away, the bags I haven’t unpacked, the bookshelf I haven’t assembled. As I write this, I should be doing my German exercises, or reading for my history class. Yet somehow I ended up writing this, almost without noticing that I was beginning to do something counterproductive.

Maybe in a few days things will be sorted out. Maybe I’ll find new classes. Maybe this semester won’t end with gloom and doom and late papers in every class and the academic apocalypse. Maybe I’ll learn to get things done on time. Maybe I’ll get more control of my life. Until then, I’ll be playing catch-up. Again.

Friday, August 20, 2010

Disability and Division

One of the attitudes about autism that really bothers me is the idea that autistic people are divided into neat little groups that have nothing to do with each other. Functioning labels – “high-functioning” versus “low-functioning” – exist to separate autistic people into categories. Once these categories have been formed, it’s easy to start generalizing about differences between the groups. Some people might say that “high-functioning” autistics are valuable and “low-functioning” autistics are not. Others might say that “low-functioning” autistics are actually autistic and “high-functioning” autistics are really just normal people who want an excuse to be mean. There’s a lot of prejudice reflected in these categorizations, and no truth.

Curebies – that’s a somewhat pejorative term for neurotypicals who want a cure for autism – are often really into the categorizing thing. If you say to them that as an autistic person, you find the idea of eliminating autism offensive and scary, they will quickly try to divide you from the people that they want to cure. They might say, “You can type/talk/pass/go to school, so you’re not really autistic.” They might say, “Of course we don’t want a cure for people like you; we want a cure for people with more severe autism.” They might say, “How dare you think that you have anything in common with my severely autistic child?”

Answer: I think I have something in common with another autistic person because we are both autistic.

Sadly, some autistic people wouldn’t agree. “Aspie” supremacists protest the removal of Asperger’s syndrome from the DSM because they don’t want to share a diagnosis with people who
“might have to wear adult diapers and maybe a head-restraining device.” (Amanda at Ballastexistenz and Bev at Square 8 have both written great posts about why this attitude is such a problem.)

When I say that I identify as autistic, or start talking about disability politics, people sometimes bring up the perceived categories of autism. They ask me, “Do you know what severe autism looks like? What do you have in common with people like that? Why shouldn’t we look for a cure for those people?”

Those people. People like that, as opposed to people like me.

My parents were alarmed when I came home from college with a renewed interest in disability. They’d spent a lot of time teaching me how to appear neurotypical, and here I was talking about the autism spectrum, and identifying with the autistic community. They recommended that I spend the summer working with non-verbal, non-passing autistic people, people who they thought of as entirely different from me. I think they hoped that when I met these people, I would get scared and decide that I didn’t have anything in common with them after all.

It didn’t work.

Earlier this week I was approved to start an
ASAN chapter based at my school. I’ve spent the summer with autistic kids, and now I’m looking forward to hanging out with other autistic adults during the school year. One of the things that I really want is for the chapter to be representative of people across the spectrum – verbal and non-verbal, passing and non-passing. I don’t want to stand apart from other autistic adults just because they do things that some neurotypicals think are scary. I don’t want to be another person trying to put as much distance as possible between myself and “those people.” “Those people” bear the brunt of our society’s horrible ideas about autism. “Those people” are just as much a part of self-advocacy as I am.

Those people. People like that. People like me.

Tuesday, August 10, 2010

On Lea's Terms

As I said previously, this summer I am volunteering at a program for autistic kids, run by a group of behaviorists from whom I got help as a child. Working with the kids can be really fun and rewarding, but sometimes, the other staff talk about the kids in a way that confuses and distresses me.

Take, for example, Lea (all names are changed). Lea is maybe 9 years old and she’s bilingual, which I think is really cool. She’s autistic, and she also has selective mutism, which is a kind of insensitive term meaning that there’s nothing physically keeping her from speaking, but she often doesn’t speak anyway. The staff where I work decided that actively pushing Lea to speak might upset her and make things worse, but learning to use speech more often was one of Lea’s long-term program goals.

Anyway, lately Lea is speaking more and more, which everyone is pretty happy about. But one of my coworkers seemed to have a problem: “It’s great that Lea is talking now, but she only wants to talk on her own terms.”

For me, communication – how and when one communicates, and what one wishes to say – is an intensely personal thing. I see nothing wrong with someone wanting to regulate their own communication. I understand the need to teach kids when to be quiet and listen when other people are speaking, but this wasn’t just about that – my coworker seemed to feel personally insulted by Lea’s desire to decide for herself when she speaks and when she is silent. Talking should be on adult terms. Talking should be on neurotypical terms. Talking should not be on Lea’s terms.

When my coworker said that, I think she was worrying about the non-verbal communication exercise. This is like a big silent art project, in which one kid, using only gestures, directs another kid in how to lay the paint and glitter out on the paper. Since non-verbal communication is difficult for many autistic people, including Lea, some of the other staff were worried that Lea would use her newly-available spoken communication instead.

She needn’t have worried. Lea was silent throughout the activity, although she had a lot of difficulty with the gestures. Her partner was Alice, the neurotypical sister of one of the autistic boys in the program. Alice seemed outraged that Lea was having difficulty understanding her directions. She angrily shook her head and stamped her foot when Lea made a circle instead of a dot. She held up her little hands and aggressively mouthed What? What? when Lea lost focus and stopped giving non-verbal instructions. A few times Alice even broke the no-talking rule to tell Lea that Lea wasn’t doing it right. I couldn’t tell what Lea was feeling, but to me she did not look happy.

“Alice was rude to Lea today,” I pointed out to the other staff, as we sorted the art supplies after the kids had left. “Does Alice have goals?”

“Oh, no, Alice is – Alice is typically-developing,” said my coworker. “She kind of sets an example for the other kids, right? She doesn’t have goals.”


Sunday, August 8, 2010

About Stimming

I used to go everywhere with a rubber bouncy ball in each hand. The weight and pressure of these in my palm, and the position of my hand as I curled my fingers around them, became second nature. Probably they provided reassuring proprioceptive feedback – not that I knew or cared about this. My rubber bouncy balls comforted me.

But when I stopped being a toddler and started being a child, there were so many things I had to do with my hands. I had to learn to make letters and tie knots. I couldn’t hold onto a rubber ball while doing that. And there were more and more places where it was really not “appropriate” for someone my age to carry a set of bouncy balls around. So I stopped carrying the bouncy balls.

I used to flap my hands and arms. Sometimes I would jump up and down when I did this. It was something I found myself doing when I was happy, when I wanted to feel myself moving through space. I tried soccer and hated it. In soccer everyone else seemed to know where to go, and I was always confused. Flapping my hands and jumping up and down, though – that came naturally.

But one day, when I was maybe nine or ten, my mom saw me jumping and flapping across the courtyard of a shopping center. She pulled me aside, and in frightened tones, told me that I shouldn’t flap my hands. Only infants did that, she said, and people who were mentally retarded. I feel it’s important to note, at this point, that my parents have mostly been lovely as far as my disability is concerned. What my mom said was the exception rather than the rule. But it made a lasting impression. I stopped flapping my hands.

I used to hum constantly. It was calming to match the music in my head to noises I could hear and feel. The music kept me moving through my day, kept me from worrying too much. I focused better when I was humming.

But my classmates hated to hear me humming in class, not only during lectures but even in labs or while laboring over art projects. The humming disrupted my classes and embarrassed my friends. In ninth grade Geometry, one exasperated girl threw peanuts at me until I shut up. Her actions, though more pragmatic than malicious, served as a wake-up call. I stopped humming.

Over the next several years, whenever I would catch myself humming – or rocking my body, or tapping my fingers, or moving my hands in a strange way – I would instantly force myself to be still and silent. I never wondered why I stopped myself from stimming – I only knew that stopping myself was the thing to do. I was cured of my self-regulatory behaviors.

And then I went to college.

At college, I was responsible for myself all the time. I had to make myself go to class and work on time, eat meals, take showers. There was no one there to call me to dinner, or to give helpful reminders that I’d be late for my class if I didn’t leave now, or to restart me if I got stuck while looking for a shirt and ended up sitting on the floor, spaced out and half-dressed. My workload increased, but my ability to plan and schedule did not improve. In class, the theories and abstractions and imprecise language hurt my head.

I had to relearn how to stim. I no longer had the luxury of rejecting any coping mechanism that worked. To stand in line at the dining center, surrounded by hordes of chatting students, I had to rock back and forth. To focus myself between work and class, I had to flap a hand for a few minutes. To hold myself together that one time I shut down at work, I had to hum. And I began carrying a rubber bouncy ball in my purse, just in case.

Looking normal worked well for me for a few years, and then it made me miserable. I find it ironic that when my teachers and parents told me to stop stimming, their goal was the same as when they taught me social skills or took me to occupational therapy: to help me live in the world with the minimum of suffering. But I suffered more when I couldn’t stim, and I came back to it like it was a wonderful hobby that I had forgotten about.

I’m volunteering at a program for autistic kids this summer. In elementary school, I worked with shadow tutors from this place; these are the people who taught me how to socialize, how to communicate my feelings, how to look normal, and other important things. But there was one thing important thing they left out: they didn’t teach me that I got to control how I behaved, or that it was okay not to pass. While I learned helpful things like sharing and cooperation, I also learned that stimming was bad, and passing was good, and when I got to college that really messed me up.

I think passing is important if you don’t want to spend all your time dealing with people’s prejudice. Obviously things shouldn’t be this way, but they are. However. I also think that people should have a lot of options available, and should be able to decide at any moment whether it’s more important to pass or to feel good. And that is what I think we should teach people: that sometimes it can be helpful to know how to pass, but that doesn’t mean you have to forget how to stim.

Monday, August 2, 2010


(You can click this to make it bigger if you like)

[Image description: a drawn comic in which I stand facing a lanky college guy. The guy is holding a cigarette and wearing a T-shirt which reads "I am totally not a hipster". I am holding a microphone, and a speech bubble indicates that I am saying to him, "May I have a moment of your time to ask you about irony?"]

This is a comic that I did about the challenges of interacting with people at college. Many college students, especially (but not exclusively) people who might be identified as hipsters, are really into irony. They are so ironic that they can even manage to be sincere in an ironic way. I'm not quite sure how that works.

Like a lot of people on the autism spectrum, I can have problems telling when other people are being ironic. I'm pretty good with plain old sarcasm (when someone says one thing but mean the opposite), but I can't get the hang of the meta-irony that hipsters use. Sometimes I have to ask people "What did you mean by that?" or "If you were going to express the same sentiments, but use words that were true, what would you say?"

This creates all kinds of awkward situations because people really aren't used to being asked these kinds of questions. One classmate began laughing, rolling her eyes, and exchanging looks with her friends when I asked her to clarify an ironic comment. And often, when I ask people what they mean by something they have said, they tell me that they don't know. This leaves me wondering: Do people really not know what they mean by what they say?

Do I fail to understand hipsters because they don't understand themselves?

Will other people ever make sense to me?