Better Living Through Flowcharts

Here’s a moment from Glee that stuck with me for a long time. Some of the main characters are talking in the choir room, and they look over and see that Brittany, the show’s “dumb blond,” has been sitting there the whole time. When they ask her what she’s doing there, she says that she took some cold medicine and fell asleep, and when she woke up, “I forgot how to leave.” Cue laughter as viewers think to themselves, “Brittany’s so dumb, she forgets how to leave a room.”

I didn’t laugh when I saw this, because this is actually something that I regularly do.

This is a bit difficult to explain. The concept of how to leave a room is something that I understand at all times, but within that concept there are tiny, practical steps that I have to keep lined up in my head. If I don’t have to take anything with me, the steps might simply be “stand up, walk to door, open door.” (This can create its own set of problems if I’m having difficulty making my body respond to the commands of my brain, which does occasionally happen.) But if I do have to take things with me, I have to organize and gather my things before I can leave. If I have to get dressed, or even leave and get showered and come back and get dressed, and leave and brush my teeth and come back and then gather my things – that’s a lot of steps.

Here’s what happens: I’m in my room in the morning, and I’m tired because I haven’t gotten enough sleep, and I can’t get all the steps lined up right. Maybe I’ve just removed my pajama top and I can’t remember what to do. Some part of my brain knows that the next step is to put on a bathrobe before proceeding to the shower, but I’m having trouble accessing that information. In this foggy state, I look around the room and I see my laptop. Aha! I can check all my favorite blogs! Ten or twenty minutes later, I realize that my class starts pretty soon and I haven’t even put my bathrobe on.

That’s pretty much a typical morning for me. Under more adverse circumstances, the problem gets worse. One memorable Saturday morning last semester, I awoke to pounding music echoing through my ceiling. That morning, the process of showering, dressing, and leaving took four hours. That’s four hours spent mostly in my room, crying in frustration because the noise was so awful and I wanted more than anything to go away, but I didn’t know how.

I was telling my girlfriend about the problem of getting stuck in my room, and she came up with an ingenious solution. (By the way, guys, this is why college is awesome: when I tell my friends about stuff like this, they are supportive and even come up with ideas instead of, say, laughing nervously or calling me a freak.) She proposed that if I made myself a list of the steps necessary to exit the room, I could reference this list whenever I was confused.

Because I am a giant nerd, the proposed list ended up as a flowchart:


[Image: a hand-drawn flow chart which gives the viewer detailed instructions in how to leave the room, with separate paths for showering and not showering, and later two different ways to pack for going out.]

This is currently taped to the door of my closet and I’ve referenced it several times. Hopefully it will help me keep on track in the mornings and get out of the room in an emergency. I’m very happy with it. I think part of learning to live more independently is finding ways to make my life easier.

Limitations

I had great plans for this year.

Last semester, I started out on a bad note, feeling stuck and overwhelmed and not getting any of my readings done. This year, I decided I would start out the semester more organized. I would plan better, and overcome my anxiety so that I could be prepared for my classes. Instead of feeling disconnected from the subjects I was studying, I would do all my readings and feel fully engaged. I would emerge knowledgeable and triumphant. It was going to be amazing.

So I started my semester with the goal of preparing for class. And for maybe two glorious weeks, I came to all my classes with all or most of the reading done, knowing exactly what we were going to be talking about and prepared to make insightful comments. Finally, I felt like a good student, a good person.

I did some of this by being more organized and planning better, and this was definitely a good thing. But ultimately, here is where the extra reading time was coming out of:

- down time, relaxing by myself
- social time with friends
- time spent doing laundry and unpacking
- sleep

As a result of this, the wonderful feeling of being a good student came with some unpleasant side effects. I felt unhappy, and sort of purposeless, with so much time spent cramming for class. I got more fatigued, until last Thursday I fell asleep in the middle of a really fascinating lecture. And I felt so mentally tired that I spent most of the weekend lying on my bed listening to an audiobook, panicking about getting my work done but somehow unable to attend to it. Halfway through Saturday I decided that if I wasn’t going to do work, I should at least get up and clean my room. I then continued to lie on my bed, despairing of my ability to do things.

Three weeks into the school year, I successfully burnt myself out.

The lesson learned from this lovely episode is that I can’t do all my reading. I don’t have the time to devote to it, the brainpower to process it all, or the emotional strength to deal a life of academic isolation.

I feel guilty about this – like I’m a bad student, a slacker, a cheater. I’m not the scholar I wanted to be. I also feel sad when I think about what I’m missing. I mean, in one of my history classes we’re studying Nazi Germany, a subject upon which I have spent countless hours perseverating. I want to do this reading, and I’m sad that I can’t.

But at the same time, I feel kind of liberated. I don’t have to walk around haunted by the specter of chapters unread, thinking I’m a failure, convincing myself I really will read those last 50 pages and then falling short. I can admit to myself that I won’t get around to reading those 50 pages, or the introduction to the next history text, or the poem we’ll be looking at in German on Friday. I can go out for dinner with friends, or read blogs, or do my fucking laundry, even if I haven’t done my reading. And I shouldn’t feel guilty about it (though I do). I know that by not finishing my reading, I’m preserving my brain to fight another day.

Tragedy Time

[I wrote a slightly less polished version of this in German for class last week]


I’m talking with a friend, and it’s going well. She wants to know what I did over the summer. Because I trust her, I tell her that I volunteered at a program for autistic kids.

Her eyebrows go up like she’s watching a sad movie. “That’s so heavy!” she exclaims. “Was it really hard?”

I don’t know what to tell her. I try to explain that being autistic isn’t a tragedy like people think. I tell her that the kids are still kids, that actually the hardest part was getting along with my co-workers. But I didn’t like her breathy “that’s so heavy!”, so there are some things she doesn’t get to know. She won’t find out that when I was a kid, I went through the same program.

---

A lot of people think that autism is a tragedy. Some say it’s so bad that we have to find the genes, we have to prevent it. They say that autistic kids ruin their parents lives, that autistic adults ruin their own lives. They think that the world would be better without autism. Without us.

---

People say, “You don’t seem disabled.” But they always have an explanation for why I’m so different. “You don’t seem disabled,” they say, “but you do seem kinda weird.” Or “you seem shy.” “I thought that you were just really sheltered.” “I thought that you were from another country.” “I thought you were on drugs.” People make up lots of explanations for me. Autism is never one of them.

Lots of people don’t want to think about disability, about autism. They’re afraid of these things. They think that disability is the same thing as sadness. That autism is so heavy. They don’t want to change their minds.

“You don’t seem disabled.” “I thought it was something else.”

Of course you did.

---

“What did you do over the summer?” another friend asks.

“Not much,” I say. “How about you?”

Respect, and the Other R-word

At dinner last week, I was talking to one of my friends about the drama department. Across the table, another friend – I’ll call her Melanie – covered her mouth with her hand as if she had just cursed inappropriately. “Oh no!” she moaned.

My girlfriend leaned towards her and patted her on the shoulder. “If you start to say it, just say ‘ridiculous’ instead,” she advised.

I realized what had happened – Melanie had used the r-word, and then realized that she had done it. She looked up at me and said “I’m sorry! I feel like I let you down.”

I got up and walked around the table to give her a hug.

At first it was hard for my friends to remember even to avoid the r-word around me, let alone to cut it out of their vocabularies entirely. But gradually, they all stopped saying the word. They started telling me that now, they cringed when they heard someone else say it. I saw them explain to other people why using the r-word was wrong. My old roommate even asked his colleagues at his summer job to stop using it.

I think that now, they all understand that the r-word has real impact, that it hurts me and other disabled people. They didn’t all think that last year. But they got where they are now because they took me seriously when I said I didn’t want to hear that word from my friends.

I have the best friends ever.

Things To Do At College

It was windy today. I went outside and I found a place with benches and bushes in a circle and I walked in figure eights and watched the wind move the trees around. I saw the flag on Main building waving and I heard it snapping. There was an airplane in the sky and I watched it for a long time. I sat on the bench and I leaned back on my arms and let my head rest on my shoulder in a lopsided way and watched the trees and felt the wind. I felt so unfocused, noticing all the sounds and all the movement but not so much specific things like squirrels and people. I felt happy in an uncomplicated way.

This might sound to some people like a spiritual experience or a deep connection to nature or a drug trip. It isn't anything so complicated as that, simply that being out in the wind is an incredibly absorbing experience. It's auditory, visual, and tactile without overwhelming any of those senses. Because of my sensory issues I find great entertainment in experiences that some people don't even notice. Watching snow fall is pleasantly stimulating in the way that I imagine watching action movies is stimulating to neurotypical people. Walking in figure eights in the wind -- maybe that's like a really great concert.

This time last year, I wouldn't have let myself stim in public, and because dorm rooms lack both wind and trees, I would have gone without this experience entirely. This year is beginning differently, with more beauty, and less shame.

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.

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.