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.

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Missing the Point About Autisticness

2012/08/31

Or, Surprise! It’s more than just not making eye contact or small talk!

I haven’t talked much about being Autistic lately on this blog. So I figured I should.

A couple months back, about halfway between now and when I first came out to my mother (who has been nothing but supportive since I came out), she took me shopping for clothes, and brought along a friend of hers, H. She said, recently, that H thought that, on seeing me being comfortable being out, that I no longer seemed Autistic. This is emphatically not true. It speaks more of the shallowness of her knowledge of what it is to be Autistic than to whether or not I am that my ability and enthusiasm for small talk, my smiles, and eye contact are all of it.

The traits of Autistic people that get the most attention in the broader society are the ones coded as most socially unacceptable.  None of these are actually understood by people who don’t experience them, even the ones positioned as experts. Overt stimming is simply seen as an undesired behavior without addressing why. Meltdowns from sensory overload are mistaken for tantrums. Our social behavior, recognized persistently as an absence of allistic social behavior rather than a specifically Autistic behavior, is the most recognized, and also not understood.

To me, my more socially-oriented traits are best understood as a subset of sensory traits. In group conversations when I am not actively included, my being slightly slower than allistic people to process things can leads me to being shut out from contributing because I never have a response in a gap in the conversation, for instance. Small talk is a learned skill, and just because I’m (in the right circumstances) socially comfortable does not mean that I’m not autistic.

And the other cognitive parts are still there. My executive  function is only barely recovered from when I burned myself out. My memory and ability to hyperfocus on things are still there. Just about all that’s changed is that I can socially pass better than I could before, because I’m no longer adding on the burden of pretending to be a man.

I’m still recovering from burnout, I’m still unemployed because of burnout, and it’s hugely invalidating, and a dramatic misunderstanding of what it is to be Autistic, to say that just because I get read a certain way, that I don’t fit the stereotype, that I might not be.


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.


I Don’t Want to Talk

2011/02/19

This isn’t addressed to anyone who knows this blog exists and who I am. This was inspired by one specific meatspace incident at the beginning of this past week, but it struck enough of a chord that there had to be other cases of this same thing that I’m not remembering off the top of my head because they’re that banal.

There’s no socially acceptable way to say you don’t want to talk, much less to say that you don’t want to talk to one specific person or to some people, but might want to talk to others. There’s no acceptable way to say “too tired to engage in small talk with people I don’t know”, or “I don’t have the mental energy to talk right now”. In the specific incident I’m thinking of (a classmate I didn’t know very well trying to make small talk with me as I rushed to get a homework assignment done), I’m glad that nobody tried to IM me in that time, either (I had to have my computer open to do homework). Fortunately with IMs, I could pretend to be busy or not see it, and all the people I like are people I’d trust not to be put off by “can’t talk right now”.

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Beginnings

2011/02/12

I have trouble with beginnings.

For the first few years of my life, I wasn’t aware of this. For the remainder of my childhood up until some months after I started reading the activist (feminist, primarily, at that time) blogosphere, I was ashamed of this as a character failing. Afterwards, I denied it. I didn’t actually have trouble with beginnings, that’s a stereotype imposed on us for being autistic. I just don’t do things I don’t want to do.

No. I’m not going to hide from this any more. I have trouble with beginnings. The kind of trouble I have with beginnings is similar to troubles other autistic people have. Starting to do something is difficult for me. This can apply to the most mundane things, like cooking dinner for myself, to things I only need to do because I’m told to (like homework assignments) to things I genuinely want to do, like, for instance, starting this blog.

The way these things play out is influenced by exactly what the thing is, of course. For things like cooking, I substitute grazing for eating cooked food, and suppress my hunger until I can’t ignore it when I don’t want to cook, which can be pretty uncomfortable. Actually, I’m ignoring hunger to write this blog post right now. . . about ignoring hunger.

I actually enjoy cooking (but don’t enjoy the dish-doing that comes after), and I definitely enjoy eating, so my trouble with getting up and starting to cook usually takes the form of getting really engaged in something else, and more having trouble with ending that than starting to cook unless I’m really exhausted, too.

With homework assignments, it’s a completely different animal. It takes the pressure of a closing window of time (usually the night before it’s due, but if I’m busy that night then whatever else that is can replace it) to do the assignment; otherwise I can’t pull up the motivation to get started at all. Sometimes this gets worse, where even that night, I continue to put off the assignment for hours, doing other, trivial things (browsing Tumblr, playing solitaire, refreshing threads on other blogs and forums long after everyone else has gone to bed) just to not have to start an assignment I don’t want to do.

Usually this is proportionate to my not wanting to do it, but for some reason I pulled an all-nighter last night putting off writing a few slides for a group presentation (which actually prompted this post), and I don’t actually have any issues with this work or my groupmates; I’m doing almost exactly what I want to do with the people I want to work with. The only previous time I’ve come nearly as close to taking that long putting off an assignment was when I was actually burned out on taking classes in that subject and hadn’t noticed until then, and this is a completely different feeling.

Even things I genuinely want to do can be affected by this. I’d decided I needed to start a blog for more than a year before I started this one. For those who are counting, yes, that’s before I figured out I was trans. I have three rewrites of an introduction post sitting on my computer, that I hated the idea of. I hate introducing myself to nobody in particular who has no reason to care about who I am, so I’m not going to do that. It took volunteering myself to assemble the gender-questioning resource list (which I am working on, slowly, as I do other things) to get me to actually start this blog, and I sincerely wanted to start it, I just had no idea how.

So, yeah, I have trouble with beginnings, it’s probably an autie thing, I don’t think it’s a character flaw even though it does make things difficult for me at times, and I’m not ashamed.

Now if you’ll excuse me, I need to do some basic self-care I was putting off. After this song.