My Existence is Unthinkable

2012/11/02

It’s a day late for Autistics Speaking Day, but I just had an experience that reminded me just how unthinkable it is that I exist.

So. Today I was on Facebook, reading status updates, when I got an ad for a bracelet to “fight autism”. This is offensive. This is vile. This is an ad being served to me telling me that something fundamental to who I am is a thing that must be fought, because they presume that, because I talk about it:

  1. I must be an allistic parent of an Autistic child, rather than an Autistic person myself.
  2. That the only thing to do is “fight autism”. That nobody on facebook who talks about autisticness would have any other view than that “fighting autism” is a good thing and a priority.

This isn’t the first ad to remind me that anyone who uses the keywords I do (“autistic”, which I use way more than “autism”. I should talk about the theory behind this sometime, because I have one. It’s actually, in its own way, “person first”). I get ads that presume I’m a parent rather than Autistic all the time. When I care to, I block them and mark them “offensive” or “against my views”.

I have never once seen an ad on Facebook presuming that the reader was Autistic.

Ever.

Not once.

Instead I get assumed to be someone I’m not. Only. I get the assumption that my political beliefs on autisticness are the opposite of what they actually are. Only. The idea that I might be an Autistic person who does not want to be cured is entirely unthinkable.

How unthinkable it is that I exist as a trans woman is a story for another day. But I have experience in that vein, too.


Intermission, and facing my fears

2012/09/14

I’m thinking of picking up my posting rate on this blog to try to aim for weekly. If nothing else, that means that I’ll have activity listed for each month even if I miss one update, and giving me a deadline drives me to write. So.

I’m working on a fairly major post, anyway. I’ll aim to have it posted by the end of the month since my prereaders for it so far have all loved it.

But, moving on, I have something pretty heavy I want to confess.

I’ve got a pretty nasty fear that’s been eating me up and bringing me to tears every time I mention it to someone. So maybe I’ll be able to exorcize this demon some if I write about it and post it publicly. I can’t promise coherence and I’m probably not going to go back and edit.

Read the rest of this entry »


Facade-Keeping

2012/05/01

This post is for Blogging Against Disablism Day 2012

Facade-keeping.

That has been my highest priority for so long, and it was only when it was about to break that I even realized it was.

For the benefit of anyone who’s new, I’ll situate myself before I begin. I’m autistic, and I am a trans woman, which are both things I have kept facades about. I’m also white and USian (citizen living in the country), which are important and relevant privileges to my experience keeping facades.

In a recent post, I talked about how I had burned out twice in as many years, the first time minorly and the more recent time very heavily. I also touched on the role of facade-keeping, and how both made the burnouts look a lot more sudden than they are. So, I’m going to talk more about the role facade-keeping has played in my life and the influence it has had, but before I can do that I’m going to have to define what I mean by it.

What I mean by “facade-keeping” goes a bit beyond what I’ve seen other autistics refer to as “passing” (for allistic), and beyond merely remaining closeted and pretending (before I came out) to be a cis man. It’s also where I pretended to have many fewer difficulties than I actually had in other things, lest I look “weird” for being challenged. It’s where I, even when I couldn’t be productive (which was often, toward the end) always tried to look like I was being productive.

This meant sitting at work, hiding my computer screen as I did something that didn’t cost my energy, ready to tab over to some work-related reading (scientific journal articles, usually) that I didn’t have the energy to read straight through. Or sometimes at all. It meant sitting late at work, guilting myself over not having been productive. It meant hiding my stims. Or not stimming, which actually made things a lot more obvious (hellooooo sleeping in class).

To a lesser extent, it meant hiding my femaleness. Even when I wanted to be able to relax it meant making every effort to not give off the slightest clue that I was a trans woman to people I had not explicitly come out to, or that my femininity strayed beyond “acceptable” bounds. Now that I am “out” and no longer make deliberate efforts to hide that I am a woman, there is a little bit of carryover of this into hiding my transness. Most of hiding that, though, is physical. Hiding my gender was easy, compared to hiding my being autistic, though; I chose what to show and what to hide, and what to hide mostly meant overt signs that I, say, had a name other than the one I was using when someone might look. Hiding my autisticness was way more all-consuming than that.

I can’t say, looking back on my life, when I decided to start keeping these facades. They clearly did not start from my diagnosis, when I was 12. They were already there, even then. They might not have been as strong, but there they were. Was it when I was younger (seven, eight, nine, maybe?) and first heard the words “asperger syndrome” (a label I loathe) applied to me? I think it was even younger. It didn’t have a single start, but was instead the biproduct of years of social shaming to make me shut up. Which, I can call myself lucky for, because at least I didn’t face worse violence.

Going forward through my life, this facade-keeping brought me benefits as well as disadvantages. It shielded me from the worst of other’s ableism, and, most importantly, from my own internalized ableism. I was quite horrible to my fellow autistics in that time, keeping my facade even to myself. Equally, seeing who the “mainstreamed” special ed kids were and looked like (like me), and who wasn’t, and who got respect among my fellow special education students, reinforced my drive to keep my facade. At this point in my life it was driven entirely by internalized ableism.

Facade-keeping got me into and through a bachelor’s degree unaccommodated, even as I developed a political consciousness as a disabled person halfway through. I can’t say if I would do that again were I doing it over, but I can’t say either that any of the accommodations that would have helped me could be given be written out in a formal accommodations document and people be expected to adhere to it. I graduated with maybe two classmates knowing me as an autistic. And fewer than that number in real friends from class.

It was about a semester and a half before I graduated that I hit the first of my burnouts. And here’s where the first negative side of facade-keeping comes in. Burnous surprised me. I was completely surprised by my inability to motivate myself to do the work in front of me. My facade of the diligent, or at least competent, student had hidden what had happened even from me. This scared me. I hid it from everyone else, too, except the people I needed to talk to to leave the program. I cut class rather than attend and not turn in homework that was due. But the burnout itself was “mild” enough that I only needed to drop one of my programs to soldier on. So I did.

Soon after, I found my actual gender. I had hidden from myself so well that even that was locked away. And, like I mentioned, I knew that I had to transition before I burned out on that, too. This was a facade that killed people to keep.

But I had class to press on through, and I kept that up. And then I graduated. And then I pressed on to graduate school. And that’s where things fell apart. Although I wasn’t aware of it at the time, my priorities had become skewed. They were, first, to maintain my facades, especially about my being disabled (because that was all I knew); second, to accomplish the productive work I was supposed to do as a graduate student, both in class and toward a dissertation. Third, to care for myself. This was a recipe for breakdown.

And it happened. A bunch of things came together all at once. Classes finally passed what I could handle with my barely-developed study skills (until then, I relied mostly on my memory). Work responsibility dramatically increased, and I was expected to be more self-directed in it, which taxed my executive function heavily. My work became based around finicky chemistry that I only half-understood, and I was still expected to get results. All of these together combined into a level of stress where, to keep my facade of competence, I pledged things I couldn’t promise and then did my utmost to do them anyway.

And then, when I finally thought I could relax from one burst of that, I hit my limit. I no longer had the executive function to be a self-motivated worker. So I slumped. And I kept up my facade, and kept trying to make myself make any small amount of progress on my work each day even though each time I did I burned myself out further, and I was stealing the energy I needed to maintain my daily life. And still it was not enough.

In bad times, I could usually keep my classwork up, because I at least had to keep up my facade of that to teachers and classmates. For small things I could cut class if I absolutely needed to. But a thing came that I couldn’t cut, and I didn’t have the energy to do well, or even to develop enough of an understanding of my topic to do well in. And I had to present it. So I did. And then I ran off and cried as soon as I could find a place without people. It was then that I realized what had happened. My facade was the most important thing, from my years of being taught that it was. It had cracked, but only because I had burned myself out so thoroughly that there was nothing left but it.

Were it not for other circumstances, that burnout could have killed me, or put me in the hospital. The level of that burnout could only have been reached by my pretending I wasn’t burned out, by my pretending I had energy, by my pretending I wasn’t disabled. Had I not been keeping my facades, there is no way I would not have headed it off earlier. And now, I’ve come to believe that no benefit the facades give is worth keeping them around a minute longer than is necessary.


Burnout

2012/05/01

[Trigger Warning: Suicidal Ideation]

(Original Publication: April 27, 2012 on tumblr)

I burn out on things in a very, very obviously autistic way.

And, to be honest, this has been probably the dominant feature in my life for almost the past two years.

As background, I pass for allistic very well. It’s not obvious, and I’ve gotten by without formal accommodation and, in the past, preferred that people I knew professionally (from class or work) not know that about me. I am, or was, one of those autistics people might claim can’t really be autistic.

Two years ago, I was an undergraduate, on track (ish) for a double major in the physical science discipline that I just dropped out of graduate school for with a “second” language degree (depending on how you count, it’s anywhere from second to fifth. But I’ve forgotten everything I learned about all the in-between ones, and two of them I didn’t get very far in ever). People who know me will have a good guess as to which language.

Sometime, I think over the summer, I burned out, at least on studying that language. I don’t actually know. I pulled energy from elsewhere and forced myself to work through everything, passed my classes, started up fall classes right when I got back to the states, and pressed on. I don’t think anyone around me noticed. In retrospect, this kinda foreshadowed some later stuff.

A month later, in mid-September, my burnout caught up to me, or maybe I finished burning out. I hit a homework assignment in my language class, and hated it to the point of refusing to do it. So I cut class rather than have to make excuses for not having it. And I started building a class-cutting habit. Only for that one class, though.

I’ve always been good at keeping up the facade. Even when I have nothing else, I have the facade, where I at least can look normal, even if on the inside nothing is working and I’m not accomplishing anything and just spinning my wheels in place.

So I dropped out of the program and withdrew from my class.

It wasn’t for another month that I started to figure out that I was trans. In retrospect, this was entirely obvious. I think it was more realizing that the stuff I’d read about trans people on the internet actually applied to me, and actually applied in more places than the internet. And, with that burnout fresh in my memory, my dominant thought was that, if I was trans, I would have to deal with it. Burning out on being a non-transitioned trans woman, on having people think me male and encouraging them to do so, would probably kill me. So I read, and I read, and I read. And the trans stuff I read resonated with me. And it also kept me safe, gave me an outlet. And, eventually, once I was (for a time) out of my parents’ financial reach, I began to physically transition.

Now, again, I burn out. I want to say this happened a month ago. It started a little longer.

This time it’s more dramatic. I’m in graduate school. My grades are crap, and my research progress is too. I pull energy from everywhere else in my life, first to remain productive at my research and my classes, and then finally to keep up my facade of looking like I am. I date my burnout to an ordinary day when I noticed I needed to do laundry. A week later, I take a mental health day off work and actually manage to do it that night.

Then my facade cracks. I don’t want to go in to how, but I publicly show that I haven’t been nearly as hard at work as I should have been. Then I notice that I’ve been burned out for a month. Or, well, I spend the rest of class stimming with my flash drive, walk out, wander around campus for a while looking for somewhere quiet to cry, find one, cry for a bit, and go to the counseling center, and somewhere during this whole breakdown I realize that I’ve been burned out for a month.

Transitioning may have saved my life here, to be quite honest. Through this breakdown, I had thoughts of wanting to die, which I could reject easily. I didn’t want to die, I just wanted my pain to be seen, to drop the facade that I’m ok. I’m not, no matter how many times since I burned out I said I was. But through all of this, I am proud of my decision to transition, proud of being honest with myself about what I need. And, well, being a girl is actually pretty awesome. So even though I fully had a plan to put myself in the hospital after an attempt (so that I would have an excuse to cut class), I never took any steps to carrying it out. I’m safe now (no suicide risk).

This was my first time being seriously suicidal. It was pretty terrifying.

Then I talk with my advisor. It’s clear that I’m going to need time off, or on light responsibility, because being self-directed with my responsibilities is what burned me out the hardest. It’s not that I’m not passionate about the things that I burned out on, I just burned out on the little things that have to go around it that hold me up so that the work is possible. Things like executive function to put my computer away and get to work. I come in wanting leave, and come out with us both in agreement that it would be better for me to not return to the group. And now I’m no longer adrift. Now I have to make decisions about which direction I want my life to go, and I can’t just do things others set up for me.

The weekend after, though, I came out to my parents, which was a thing I scheduled long before, and now I’m out everywhere. I even have a picture of myself as my profile pic on out!facebook and a coming-out post on closet!facebook. I’m done keeping up the boy facade, even though it was the allistic facade that burned me out.

In as many years (on a calendar that starts in August), I have had two burnouts. This is the cost of hiding my autisticness.


Belated BADD Post

2011/05/03

Blogging Against Disablism Day, May 1st 2011

I’m going to, unfortunately, keep this short, because I’m, like, way late for this.

So, a month and change ago, I announced that I was going to promote awareness of ableism, especially against autistic people, and not put up with (online) shit for all of April and see how that would go. This blog didn’t see much action, there actually wasn’t much to take down. Surprisingly, the section of the mainstream feminist sites that I go to either didn’t have anything I saw about autistic people, or managed to center autistic people for them. There was a moment on Shakesville that was kinda iffy in comments, but this year’s post was by an actual autistic person, rather than being by and about psychoconvergent family members of autistic people.

I didn’t quite live up to my pledge to call out everything in a timeley manner. There was some pretty disgusting shit in a Cracked article where they took really unnecessary jabs at autistic people that were completely tangential to the wider point they were making about the whitewashing of the Akira remake. This isn’t the first time they’ve done something like that either (no I will not provide links. The specific article in question is fairly easy to find in other people’s archives).

Like any other month-long campaign, it kinda fizzled out midway through. A month is a really long time to remain focused on one side-project. This is true about the other “awareness” thing that this whole Ablism Awareness Month was in response to as much as it is about mine. Which was good, since it meant that ablist badness floated across my Tumblr dash way less after the first couple weeks. Of course, I’m not tracking any tags, and all the people I follow are cool. From what I saw rebloggged and rebutted handily by people who were, the bigotry continued to flow.

In all, though, I think the project was a success. Something needs to be done to address the other “awareness” thing (the horrendously ableist one, not sexual assault awareness month. That one’s a way better use of the month). I think it’s quite likely I’ll do it again next year.


We Need a New Word 2

2011/03/24

The word “neurotypical”, whether in the sense of “not autistic” and the more general sense of “not mentally ill”, has an array of problems. Let’s split the word into it’s roots and take them on that way. I’ll be starting from the back, since that’s the one I’ve had complaints with for longer. Read the rest of this entry »