Abilities, and burnout
This is what I’d really intended to write about yesterday. I got started on something similar, as the other part of my response to Amanda’s My sort of people, just as real as theirs. I found the discussion of subtypes of what gets called autism very interesting.
BTW, The Fireworks Are Interesting describes something very similar to what I have meant by trying to wrap words around ideas. Trying for anything approaching precision makes me throw an awful lot of words around, and it’s still only a very rough approximation of what I’m thinking. I ramble and circle around things verbally, and am painfully aware of that fact. And, indeed, “Autism is not a thing. There are only the people who get called autistic.” That’s one of the things I was trying to describe in a slightly different way in the Sorts of people, and conflict post.
Reading the description/comments discussion of one particular subtype of people who get called autistic, I was struck by the number of similarities to my own experiences. As Anne said in comments, it’s mostly internal, and I know I haven’t talked about that part of it much because most of what I did say got interpreted as craziness. Old habits die hard.
Some of it is perceptual. I mostly go around in “this is a table” emulation mode these days. It takes energy, and I can’t always keep it up. In a way it makes dealing with other people easier when I can look at things from a more similar perspective, but it does take energy away from language (among other things). I am very aware of the conscious shift there. Using the terminology given to me earlier, the best description I had before was “sense of unreality”–but that never struck me as right, at all. (I have dissociated. This is very different.) Looked at that way, the world is just as real, if not more so; there aren’t so many edges, and it’s easier to see how things are connected.
One of the things some people have described before, which made me feel far less crazy, is the serious fluctuation in abilities and what knowledge is accessible. One of the first descriptions I ran across of this kind of thing was in Dave Spicer’s Autism Society of North Carolina – 2005 Annual Conference Closing Session.
The subtypes post goes into that, from a slightly different angle. This ability fluctuation and loss has been rough to deal with, particularly with the “lazy and/or stupid” interpretations. It’s great to get some idea of what’s behind it. I’ve repeatedly learned and relearned how to sight read music (do well by ear, anyway) and how to play chess at a basic level, two of the most striking ones. I’ve given up on chess, in part because it was embarrassing to sit down to play and have to admit you no longer knew how the pieces move! I keep relearning musical notation as needed, but it’s frustrating.
Losing pretty much all access to near-fluent German almost overnight may have been from this, medication (looked like it at the time), or both. I can understand a lot more by listening if I am not thinking about it (the same with French), but cannot retrieve things well. The same happens with English to some extent–my first language–as I only figured out recently, though the gaps are less obvious because I have constant exposure and more hoarded vocabulary to draw on. I still lost most ability to write anything beyond a shopping list in English for a while there. I also have a lot less in the way of expressive language abilities (especially realtime) than I used to, which is frustrating; I’ve also blamed this on the neurotransmitter scrambling, for lack of anything better. It’s hard to tell.
Besides validation that, hey, maybe it’s really possible for a person’s abilities to fluctuate depending on what else is going on–and that being able to do X at a given moment doesn’t mean you’ll always be able to do X, much less Y and Z–that also started me thinking about the expectation that everybody must develop in the same way, at some kind of even rate, on the same schedule, and demonstrate this progress through the same outward signs. Yep, another harmful bit of universalism. I’ve read some excellent discussions of this kind of thing since.
What looks cute when you’re 4 doesn’t always look cute when you’re 14. Or 24, or… Your behavior may not have changed, but interpretations will, as it gets compared to what’s expected at that age. As Amanda described it in a comment on another of her recent posts:
Looking like a functional seven-year-old is much easier than looking like a functional adult. (In my case seriously there were these gaps in my skills that were nuisance level when I was nine but never got any better and by the time I was an adult they were huge gaping holes. And people act like I got more autistic in that regard but really all that happened was these things hadn’t changed since I was five or so despite attempts to teach me. Staying the same looks like going backwards if everyone else is moving forwards. There is just so much wrong with pretending to know a child’s future.)
Besides the basic fluctuation–and serious differences in ability between different areas, including what gets described as dyscalculia–I kept running into problems from this. Especially when I hit adolescence, then later when I hit college. (Then I burned out. Repeatedly. Which made things that much better.) Heck, the gaps and difficulties were obvious enough by the time I was 8 or 9 that one great-aunt, an educator whom I rarely even saw, brought me a huge stack of books on coping while “gifted”. I appreciate this gesture much more now–especially since she was the main person not pretending that I was not having problems coping–but the books didn’t help.
In my particular case, the unexpected skills/ability to show skills pattern got some really nasty interpretations–especially in school–because I was good at testing. (Less so, these days.) The lowest my IQ tested out was 185. I am not mentioning this out of some weird sense of supremacy, but to point out the serious disconnect between some other people’s expectations and what I was ever able to do. It’s apparently easy to project like mad, and build a mental construct of “someone that smart” based on assumptions that you, personally, would never run into a problem that you couldn’t think your way around if sufficiently motivated to do so, were you “that smart”. It’s not much of a leap to then substitute that mental construct for the real human being in front of you, and make up all kinds of weird explanations for why the two do not match. At all.*
Because when we had no words to describe why it was difficult for us to do our work, when we hadn’t yet even conceived of the idea that not everyone got inertially stuck in particular cognitive modes and could actually switch between them at will, people started handing us words to “explain” why we supposedly didn’t want to do schoolwork, putting words into our mouths. And those words were all things like “boredom” and “procrastination” and “lack of motivation.”
We started repeating all those words because we figured everyone else must know better than we did, and later on, when we found out what the words meant, decided they must be our “real” reasons for our problems with schoolwork, even if they didn’t resemble all that much the times when we were actually bored. We decided we must be horrible liars who were even deceiving ourselves, because we were just that awful, just that eager to make excuses, and drove ourselves over and over to a point of shutdown where nothing made sense, and would keep on blaming ourselves for “lying,” even when we could barely move a muscle. Sometimes we still think we might not have experienced burnout in our mid-20s if we hadn’t done that– if we’d ever thought we could believe we weren’t lying about things as basic as whether we were too exhausted to move.
Yeah, I internalized a bunch of that crap (as discussed in “[L]ook who they are and how many of them are saying it.”), and assumed I must really be bored and lazy (not to mention mentally ill) when I was really so overloaded I was barely holding on by my fingernails. When that is the only language you have heard used to describe something–by multiple different people, who insist their interpretations of other people’s inner states and outward experiences are more accurate than those of the other people themselves could ever be–you don’t know what else to call things. Very much like the “sense of unreality” thing I mentioned earlier. And the roughly 78 billion kinds of “tickly” sensations from sensory issues, most of which have nothing in common with actual tickling.
I described some of these weird and highly unflattering interpretations in Tics, and alphabet soup. Another example which just occurred to me recently, also from school? The “daydreaming and not paying attention” thing, whether it was interpreted as willful or a sign of AD(H)D. I eventually believed that I really was daydreaming. What was really happening was that I was overloaded to the point of shutting down on a regular basis, not to mention becoming unable to stay in “this is a table” mode. My auditory processing was/is frequently the first thing to go. Several teachers kept getting really angry–and taking it as a sign of disrespect through being an intolerable smartass (don’t get me going on that particular brand of “respect”)–when they tried to humiliate me by asking me to repeat what they’d been saying, and I could repeat the last ten minutes verbatim, while I was so obviously “not paying attention”. That’s echolalia, folks. It didn’t mean I was capable of understanding more than a couple of words of it, it just meant that some kind of auditory processing was still happening in a way that I could not access otherwise; I did not understand it while I was repeating it. I really had very little idea of what was going on a good bit of the time in the classroom, and it showed. Still, I assumed I was really just getting distracted and daydreaming, after it was described that way enough times, including by people who were trying to help.
Other people’s perceptions were a very mixed blessing. At times, it made things easier on the surface (e.g., they’d interpret my language and auditory processing problems as evidence of Deep Thought, further reinforcing their own projections), but it spent more time rising up and biting me in the ass. It helped with the “crazy” interpretations.
I also learned that the most important thing about me was my perceived intelligence. (All this may well be coming across sounding spoiled or something equally pleasant, but I do not intend it that way at all.) I may not have been able to tell exactly what these other people were talking about, but it was obviously something they placed great value on. Other people’s reactions to me–and how they thought it was appropriate to treat me–varied quite a lot depending on how “smart” they thought I was at any given moment. That made it worse when I did or said “stupid”, “careless”, “thoughtless” things (often), and made me beat myself up more.
Then came the waves of burnout, and cognitive effects from psych medications. It’s still hard to sort out what’s what there. I stopped coming across as very “intelligent” most of the time, even to myself. (Based on what I’d been taught about this perceived “intelligence”.) That was the main thing I’d been depending on, since I started school. Once I started figuring out what was going on there, I had to look at some of the attitudes and assumptions I’d absorbed about “intelligence” and value as a human being/organism in general. Not many of those associations were on a really conscious level, and I was shocked by some of the crap I’d managed to squirrel away under the surface.
It was good to see burnout described as a real experience. I’m still glad to get the validation that maybe I’m not just lazy, crazy, and stupid. Even when you learn better, that stuff doesn’t just go away overnight. I still get surprised sometimes at evidence that I am not actually a lazy procrastinator, such as the recent observation that when I’m making a point of eating more regularly (with poorly controlled diabetes, to boot), I feel better physically and mentally–and I automatically get more done! (Even though it takes a lot of resources to try to make sure this happens.) When the chronic pain levels are less overwhelming (eating regularly and replacing enough polyuria-depleted vitamins and minerals has helped), I get more done, and am enough less overloaded so I can get out of the house more and do things like grocery shopping so I’ll have convenient things to eat! Imagine that.
The comments on Amanda’s recent Aspie Supremacy can kill contain a very good discussion of burnout. It’s well worth a read, as is her older “Help! I Seem to be Getting More Autistic!” piece which is mentioned multiple times. That one helped me immensely, when I first figured out I might be autistic (while in another wave of burnout).
As I’ve mentioned before, I crashed out of college about three years in. A huge number of things conspired to make me burn out spectacularly. (This was not the first time it happened, nor the last, but definitely the most spectacular.) All kinds of overload, lack of recognized limits and the resulting exhaustion and neglect, and PTSD really caught up with me–and the psych meds to help with this really helped send me over the edge. I’d already picked up plenty of labels by that point, so spent late 1996-early 2004 on SSI for my galloping, treatment-resistant mental illness, rarely able to go out of the house even had I not been so heavily medicated.
Another comment from Amanda, on that same post, sounded painfully familiar here:
When I look at the period of time when I was vastly overdoing things, I find that when I am honest and not just repeating book titles, that “pretending to be normal never fit me. What I was doing was attempting to do what I thought was required of me. Sometimes I passed, but a lot of time passing wasn’t because I didn’t look autistic, but because people around me were willing to ignore or explain away all my traits.
I also perceived little difference between doing what was required of me in a way where my efforts made me look slightly more “normal”, and doing what I thought was required of me by playing along with every psych diagnosis anyone suggested to me. They were both attempts to meet mysterious requirements from a baffling outside world…
I also remember being terrified that someone would discover there was. “no good reason” for my increasing inability to function…So when I couldn’t cover it with sheer willpower, in desperation I clung to any and all conditions either diagnosed or suggested to me — adding in traits to “explain” my inability to function as some massive psychological crisis because that at least made sense.
All that time, I was living in a very stressful environment, and only really started recovering much from the burnout when I moved across the Atlantic from said stressful environment. I am still not sure how I managed this, at all, the state I was in.** Maybe it was one of those instinctive “fight for survival” situations, which would not be any kind of exaggeration. It still baffles me.
I lost a lot of abilities, and am having to come to terms with the idea that I may well never get some of them back. I am trying to come to the conclusion that this is less important than I have been led to believe–and it’s working, to some extent. I’m trying not to base my own estimations of my worth on how other people react to me, nor on the kind of outward accomplishments that other people can understand, much less appreciate. I look far more autistic now than I did when some of my behavior got labelled batshit crazy in the first place. I have a lot fewer spoons available than I used to, and just can’t handle nearly as much. My capability to come across as anything in the same (not neighborhood, but) metropolitan area as “normal” is very low these days. And, yeah, I am still trying to deal with feeling guilty and ashamed about all this.
* This even happened when I was sent for intensive educational/LD testing at 15, at UVA’s Kluge Center. They concluded that, since my IQ tested out the highest they’d ever seen, I must be bored, spoiled, and unmotivated. That was the thrust of the official report. My real life performance gaps got neatly ‘splained away. The therapist who’d referred me for testing went ballistic, especially once she saw the testing reports–with huge honking gaps between verbal and nonverbal stuff, etc. (“the very definition of a learning disability, several of them”, as she put it). My parents ended up getting a refund from them.
** Especially since this involved falling in love with someone I met online at a time that most of what I could do was sit at the keyboard for at least 12 hours a day–and, after a few harrowing visits***, moving with the idea of getting married. (Which I never wanted to do at all, but needs must, with La Migra and all.) Which brings me straight to the popular idea of marriage (preferably with kids) as a universal indicator of functioning. Much less as the One True Way to have a valuable kind of life–be you gay, trans, autistic, missing any kind of body parts, seriously disabled in any other way, whatever. There is also the whole slew of assumptions about how every marriage must work–with more focus on some mental picture of the institution and how people must fit into it, than on any idea of marriage serving the individuals involved in whatever ways work best for them. Some common ideas about What Marriage Means can cover up/excuse all sorts of abuse, including of a disabled partner. Talk about all kinds of harmful universalism in action.
Nigel asked me to marry him when I was acting pretty screwy and “low-functioning”–and guess what, I still am! He really likes me anyway, and is not entirely non-screwy himself. I still have to work not to feel guilty about being a Bad Wife who Doesn’t Pull Her Weight, even while consciously rejecting that there is any single “good” kind. Hell, one of my ancestors had a wife and a bunch of kids when he spectacularly burned out/went geilt, and went off to live by himself in a cave in the woods. (His family made sure he stayed warm and had enough to eat. He eventually came back.) It didn’t sound like he was functioning too well before, or after, that. Marriage doesn’t really indicate much, other than that the person has gotten married.
*** I still really freaking hate flying. (This is another of those You Don’t Get It situations.) It’s overloading in so many ways; the time pressure is awful for someone with as fluid a sense of time as I have; I get claustrophobic in a huge flying bus that can’t stop and let you off; my muscle spasms go crazy even if I get up and move around as often as possible, so not only am I in bad pain and afraid I’m getting DVT instead of leg cramps, I can barely walk for several days on the other end; and I am frankly terrified of having to deal with security because somebody thinks I’m acting weird (which only increases the “suspicious” behavior from stress). These days, you can also throw in being unable to get up at all (much less to pee while diabetic) during the last hour, and more restrictions on using an mp3 player or other electronics to cope with the stress. I was almost more concerned about the idea of flying to California from London than about all the stressful details of moving there!
Getting some antianxiety meds–which helps the stress-amplified tics, besides the painful muscle spasms–has helped immensely before, and I might feel a little better with an NAS alert card just in case security takes too much interest. This may be complicated by never having gotten an official diagnosis to back that up, having wanted just to keep away from mental health professionals now that I can avoid them. But, it might make me feel less stressed about the idea of getting hassled while totally unable to make any kind of intelligent accounting for myself. I have never been bothered by security, luckily. I was glad Nigel was with me when I did start melting down one time–on a fairly short-haul trip–because security and the flight attendant obviously just assumed we’d been having a knock-down, drag-out fight. Tacky behavior, but not scary. That experience still scared the hell out of me, because it could easily have gone so differently.