Moog wrote:
Being able to cope with things is no indication of severity of condition. Some people cope very well with horrendous difficulties. Others fall apart over relatively trivial things.
Yes, that. I cope very well with conditions (and I'm not even discussing autism yet) that are way more than most people here deal with, and I've seen people fall apart over much milder and less painful physical impairments.
As far as autism goes, I really don't think it's possible to rank it from mild to severe for more than one reason.
One, we don't know what autism is yet. Perhaps the more autism you have the better you can do certain things whereas having just a little of it muddles your life up more (and there's evidence both ways on that).
Two, autism affects a huge number of skills. When people are judging mild to severe they usually are doing the equivalent of picking five skills out of a hundred or more affected, to represent the severity of someone's difficulties in all one hundred of them. Which is both inaccurate and unfair.
I'm also, again, very very sick of listening to people assume severity of difficulties is severity of suffering. It's not true, except in conditions such as depression that are defined as a type of suffering. And autism is not such a condition. It also irritates the crap out of me to hear people going on about how bad they have it because (then they describe their skills in certain areas), when I am nowhere near as good at doing those things as they are. Not because I'm suffering more. Rather because generally I'm suffering less, and I find it irritating when people think the. World is ending because they have trouble in something I have even more trouble in.
Anyway, I have fluctuating abilities. I never know where my capabilities will be next. Usually this comes about because my default ability in an area is pretty low, but I can climb higher much like climbing a cliff. But when I get tired I fall down again. And I am often not able to even begin the climb.
I start out in a place where language does not exist, abstraction does not exist, and the categories people generally divide the world into do not exist. I perceive the world entirely as raw sensory input, sorted over time into common patterns. I have little conscious connection to my body, and experience body sensations as external. I can move sometimes but in an instinctive sort of way rather than by deliberate effort (and deliberate effort gets me nowhere in anything from memory and thought to physical movement).
If I become able to climb, I can climb into only a tiny number of areas at once, the rest remain at the bottom (default) or lower.
I can climb into language making some sense to me (though at best my receptive language is still delayed and hanging by a thread). I can climb into being able to use language (usually in a pattern based way rather than from an abstract way, so even when my writing is excellent it comes from a completely different place than typical writing does). I can no longer climb into usable speech, that is a permanent shutdown for me. I can climb into abstract thought though not as high as most people and not for long. I can do the same with categorizing/recognizing objects in my environment rather than patterns of light/sound/etc.
But to climb into one or two of those the rest have to fall down. The thing is though, that when these skills are at the bottom of their range, I have skills that are almost never talked about or even conceived of by people whose "bottom" is up higher into more abstract places (even people with impairments in those areas are often above my bottom even if I can sometimes climb higher... another reason strict ratings from mild to severe are meaningless in such a complex condition).
Those abilities are usually based in pattern rather than abstraction. I can map out the patterns of movement in people and animals and compare them to previous patterns. I can map out the patterns of language used and over time they develop connections to what is happening around me at the same time (this is how I learned language). And I have many other abilities with the same basis that are absent both in most nonautistic people, and in autistic people who have ended up in the world of words and abstractions and other such things (people who are often deemed at first glance to be far better at functioning in these areas). Sometimes these skills seem to duplicate other peoples skills until you look beneath the surface. And sometimes they don't.
So:
I can write. Sometimes. My writing at my best consists of mixing and matching the patterns of words I have seen and applying them to patterns of events. There is always a mismatch even when I seem a skilled writer. My writing can appear contradictory because I am not doing it by matching precisely chosen words, but rather huge clumps of words that may not have anything in common.
I cannot speak except echolalia sometimes.
I have very few daily living skills and require pretty intensive support at best. I need at least some help in every single area known as an ADL or IADL (look it up).
I have trouble understanding language, especially spoken but also written. And at the drop of a hat I can suddenly have no understanding at all.
I have trouble picking out objects and their functions from my surroundings. At the drop of a hat I can't do it at all.
I excel at things that require pattern sensing rather than abstraction or categorization, and can use these abilities in areas that most people assume can only be entered by symbols and abstractions and categories. Such as language. (This is probably also why as a kid I learned to match written words to spoken sounds easily and early but couldn't even comprehend they had meaning until late, at which point I had already learned, despite a delay/loss of spoken language early on, to sound as if I was talking to people by matching up combinations of sounds in conversations).
Initiating, combining, sustaining, stopping, etc. movements, thoughts, memories, etc. is hard for me. These things pretty much have to be triggered by some outside event. Otherwise I can't (or can barely) move, remember, or think (conventional thought anyway) at all.
I react primarily to sensory aspects of my environment rather than categories. What this means in everyday life is that I appear to be a "sensory seeker" who is attracted to colors, textures, movements, tones, etc. And interacts with them in visibly unusual ways.
I used to be able to avoid doing at least some repetitive movements. I became unable to avoid it. Now, although I am still unable to avoid it on purpose, an autism related movement disorder seems to have made it hard to do even some involuntary movements. So I am still more and move repetitively less than even a couple years ago. I can feel the movements trying inside my head to happen though, just like some Touretters apparently do when on medication.
I have no job or any ability to even begin to have one. I can do amounts of volunteer work so teeny that they don't count even as part time. Like a few times a year.
I qualify for 24 hour support but have less at the moment, while looking for a roommate and a 2 bedroom apartment. I have had to fight to stay out of ICF/MR types of places. (Although really every sort of institution contains the exact same sorts of people who live outside it.)
My friends are usually all autistic or otherwise neurologically unusual. Not by choice (I am not bigoted either direction) but becauseb I have trouble staying friends with people who don't understand how and why I do certain things, and while I have met some amazingly autistic friendly "typical" people, many can't put up with someone like me. Even though I have made good friends, I can only focus on one at a time at best, and frequently forget any other friends, including my closest ones, even exist. This obviously creates problems. If I have a friend that friend has to do most of the work maintaining the friendship or it just vanishes.
Around people, I have two main ways of understanding them. I can put all my resources into understanding language even though it cuts out like radio static all the time. At that point I cannot understand anything but the words. Or else language is just a bunch of nonsense sounds and I can map out the pattern and rhythm of their movements and sounds (but still not the way nonautistic people do it at all, I get things they miss and miss things they get). And often I can only understand or respond but not both. Makes things interesting.
I know I have social skills problems because of the reactions I get. But I would be unable to say how much. To me, all the other problems I discussed are more central to what gets me called autistic than social stuff is. Social stuff is way off in the edges where I can barely feel it.
But I know I've been called (by people casually or otherwise referring to my social behavior) naive, blunt, aloof, unsocial, passive (huge amounts of passive), awkward, childlike, bizarre, unusual, crazy, ret*d, spaz, too talkative, too quiet (nothing in between), etc.
I cannot start conversations, just can respond to them, usually.
Sometimes it takes me so long to respond that people assume I haven't heard them or have nothing to say and move on. Sometimes I feel like I am as still as a statue and everyone else is running around like a videotape on fastforward.
I was always more likely to come across strange like Luna Lovegood than uptight and formal.
People who meet me offline at random usually see me as MR unless they decide that appearance is due entirely to something physical (when they do that it's because of the wheelchair) and assume I don't have abilities I have. People who meet me online can often see me as a good writer and therefore assume I have abilities I don't.
When I write I cannot control the length of what I am writing. Which is why this post is huge. I see so many details and can't summarize. Other times I say short things and cannot elaborate. Sorry about the length. Posts about my abilities are inevitably huge because I can only see them one by one and not as an overall level. And I reject both the terms low and high functioning (professionally have been called the first one so I may speak as someone who has been called that but don't call myself that if you get the distinction).
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"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams
24 May 2010, 9:46 am
)... but i live with my parents, my mom still does things like make important phone calls for me, and i can't really form normal relationships. I know some people at work that i talk to there, and i have a couple friends who i might do something with very occasionally, but there's no one i "hang out" with on a regular basis outside of my family.. And any kind of romantic relationship is very unlikely any time soon, and i've never had one. My job involves talking to people though, so in that structured environment i'm usually fine interacting with people to answer questions and explain things(everyone thinks i'm weird and i've had big meltdowns at work though). So, i don't know where that puts me.
