Apologies in advance for the length of this. I'll understand if it's tl;dr. This is just a subject (the actual nature of autism vs. the usual definitions of autism) that is right up my alley. Unfortunately, because of autism-related issues, I'm not able to make a summary of my writing. I feel really bad about that because I myself can have trouble reading something this long, I have comprehension issues of my own. And I know what it's like not to get a summary. But I'm unable to control the length of my writing very well, and after driving myself to shutdown/meltdown many times trying, I've come to just put this kind of disclaimer at the beginning so people don't think I'm just being thoughtless for not providing a summary.
So, if you're up for reading this long, long message, here goes:
As far as I'm concerned, the focus on social communication is a red herring. Note that this is for my particular variety of autism (or in other words, the traits that get me labeled autistic), but I think it's true for a large number of other people too.
So, as far as I'm concerned, the things that make me different from most people are differences in three areas: Perception, thinking, and creating movements. Well, three as defined by a particular way of looking at language. Those are quite possibly due to only one kind of difference that just happens to affect those three things. And for me the biggest differences are in how I handle perceptual information, and then that creates differences in thinking and differences in how I relate to and move my body.
And in turn those differences, combined with the way that most people process information, result in social differences as well. But those social differences are way the heck out on the periphery when compared to the perceptual differences themselves. And I wouldn't even say all the social differences are located within me, they're more located within the space taken up between me and other people, and their own configuration is partly at fault as much as mine is.
So what, for me, are these differences?
It's hard to describe, and I have a headache right now so I can't do it justice. But it's like... to me the world is just incredibly rich with sensory information, to the point where i'm completely flooded and it's all swirling around me. And I deal with the world largely by dealing with sensory information and the patterns that information forms. Dealing with the world in this way means that I have difficulty with standard thought, in terms of ideas, categories, etc., all those things feel rigid and unnatural to me, and of course so do words. When I look around me, I don't see the identities of objects, I just see colors and patterns and forms and textures and stuff. Getting to the identities (categories/ideas) takes effort and is tiring. So I find ways of navigating the world that rely as little as possible on words and ideas.
When I do have to use words and ideas, it's like my entire world shifts in a really unpleasant way. I become unaware of much of what I'm normally aware of. I suddenly develop all these supposedly characteristic autistic traits (rigidity, literalism, inability to understand nonverbal information, etc.) as a result of force-fitting my thoughts into ideas/words. If I'm outside of ideas/words, then I actually find that I do the exact opposite: I'll be understanding the rhythm and movement of a person's body, the tonality of their speech, etc., but be missing the words. (I've also noticed that all these rhythms and tones I pick up on are different from the ones nonautistic people pick up on.) But when I'm picking up on all those things, it's impossible for me to respond in ways that most people would understand easily. Meanwhile, these perceptual traits also give me a very strange relationship with my body. This creates unusual body language on my part as well.
So... it's like all the social stuff is this annoying peripheral stuff that happens to be what particular nonautistic professionals have picked up on in their interactions with autistic people, and in many cases they've misunderstood it entirely or ascribed weird meanings to it that don't necessarily exist. Gradually many of those assumptions are being proven wrong but it's taken decades to get to this point. But for me and for others like me, social stuff is not the most difficult or the most interesting part of being autistic.
What are things that it makes difficult, that aren't necessarily listed in the criteria (but that are acknowledged at times as things autistic people can have serious problems with)? And mind you this is a list for me (and those like me), it's not going to be anything close to universal.
First off, there's the whole set of things that being 'beneath' typical idea-land creates trouble with. Understanding language. Understanding the identity and meaning of various objects around me. Holding onto and manipulating ideas for extended periods of time. I go through a lot of life just feeling like I'm dancing through various swirls of sensory patterns. This has its rewards and I wouldn't trade it for anything but it does create difficulties.
Then there's relating to my body. I relate to it as external. It's hard for me to understand sensations that originate in different parts of my body, or to locate them. It's also difficult for me to move my body.
I have a very sort of polarized set of abilities in terms of voluntary vs. triggered or involuntary. Meaning, for instance, if you trigger a movement with some kind of outside stimulus, or if I have an involuntary movement, then it's quite likely that the movement will happen. But if I try to do the movement voluntarily, then it will often either not happen, or it will happen only with great difficulty and sometimes only in a lesser form (like trying to smile and my lips only moving partway -- but if an emotion triggers a smile then I will smile wider). This is not just true of movements. My memory works the same way, having an excellent triggered memory and a terrible voluntary memory, which confuses people. Thinking is the same way, where I can get better triggered thoughts than on purpose. Writing, which combines several of these things, is another thing where if something triggers the writing or it springs out of nowhere, then I might write something very long, but try to decide to write, and then almost nothing comes out no matter how much willpower I throw into it. I have an autism-related movement disorder that has meant that not only do I have this big discrepancy between the two types of action, but that discrepancy has only gotten wider and wider the older I get (it started getting more intense when I was 12, and I'm 30 now). These difficulties extend not just to starting things, but also stopping, continuing, combining, planning, executing, and switching. (I got that list from a book referenced in the article "Movement difference: a closer look at the possibilities". That's a link to the article, which contains interesting information if you've never explored that aspect of autism before. Note that when they say movement, they're referring not only to physical movement but also cognitive and emotional movement, because all can be affected in the same way.)
Since I am bombarded with information all the time, I function better in familiar situations where having them memorized reduces the amount of new information I have to process in order to get things done. This means I function best in the bedroom of my apartment where everything stays the same. The moment I start moving around or have to leave, I get bombarded with more and more information from my body and surroundings. This can make me literally motion-sick. It can also greatly reduce my ability to interact with and understand my environment in anything approaching a typical way. I end up either immobilized, or (happened more often in the past when I was more mobile) sort of wandering around through all the different sensations with little regard to complex thought or understanding of what was going on, only to sensations. Outdoors in the middle of the street is just one example of how this can become a serious problem. This, too, has gotten more prominent with age. I used to be able to go to school and stuff, but now there's no way on earth I could do even a fraction of that much. I need to bring someone with me wherever I go for safety purposes except in really specific and controlled situations that I'm very familiar with. Right now I generally leave home once a week and spend the entire rest of the week barely recovering before I have to do it again. And even that's something where I had to go and scope out the location while it was free of people before I could safely navigate it with the chaos that lots of people bring to it. I really don't like when this sort of thing is referred to as rigidity. You shouldn't call a blind person rigid for needing objects in the same spot every time so they don't lose them, but somehow the same general principle in an autistic person gets us accused of "rigidity".
My relationship to language is pretty complex in itself. I grew up with a fairly severe receptive language delay. I could speak (or rather make word sounds in response to other word sounds) before I could understand a single word of language. I did it entirely by pattern. This means that when my ability to understand it finally at least somewhat caught up to my ability to speak, then I already had burned into my brain these ways of using language that had everything to do with generating plausible sentences in response to what other people said, and nothing at all to do with communication. My ability to actually communicate my meaning was only a very small percentage of the time I spent speaking. Then due to the movement disorder I began losing a lot of speech anyway (it started off just disappearing now and then, and now is basically disappeared for good except for random echolalic utterances that I suppress because they're meaningless and just confuse people). Even with writing I still hd to wrest control away from my "Translator" mechanism, but it was much easier to do with writing than with speech (just never actually easy). And even now, my ability to understand language doesn't even approach my apparent writing ability. That writing ability, despite seeming eloquence, also only exists on limited number of topics, and isn't reliable. I can't decide to say something and then say it. I can only say what decides to come out based on various triggering mechanisms. It's that old voluntary vs. triggered divide again and it's sometimes really created problems, like life-threatening ones because I couldn't communicate about physical symptoms in my body that were quite urgent, even if I could explain detailed information about something totally irrelevant to the situation. I also lack a bunch of communication-related instincts that most people seem to have, so simply being able to write like this doesn't mean as much as you'd think. (Being able to explain my abilities and difficulties in depth is something I've struggled greatly to do over a period of decades, so this is the culmination of long, frustrating periods tearing my hair out trying to get words to happen that wouldn't happen at the time. And right now there are many things that I still can't communicate about but I might be able to communicate ten years later. As such, there's a massive lag time on my ability to relate my experiences in words. Sometimes now I'll find myself able to communicate something I needed to say ten years ago.)
I also have an unusual relationship to time. I have almost no sense of time at all, although sometimes I must because during seizures I can feel time dragging out. But most of the time I can't really perceive time well. And even like... when it comes to something now vs. ten years ago, it feels like all that time is actually "now". Like ten years ago still exists, I just can't get there, the same way I can't get to the moon. My circadian rhythms are quite messed up and I have irregular sleep-wake pattern, a sleep disorder more common in autistic people and other people with neurological differences. Without medication, I basically sleep randomly in little bursts. And while some people are fine with being that way, it really makes me feel nasty on a physical level compared to how I feel with medication making me at least roughly sleep every night. (Although with medication I often get just other forms of circadian issues. It's like I sleep for longer periods of time, and usually sleep at night, but what time of night slides around a lot despite the medication happening at 9 every night. And I often fall asleep in the daytime too.) There's been speculation about the relationship of unusual time-sense and the kind of autism-related catatonic/parkinson-like movement disorder I have, but I don't know how much of it is real or not.
As far as my perceptions of my body goes... as I said, I relate to it as external and have difficulty understanding and localizing sensations on it. This means that I went 2/3 of my life before I got treatment for a severe pain condition. My perception of pain is hard to describe to someone who's not experiencing it. But just imagine that you are surrounded by all these sensations. There's the blue of the sky, there's the texture of your underwear, there's the movement of someone off in the distance, there's the sound of traffic, and all these sights and sounds and textures and smells and tastes jumbled together. Now only one of those sensations is pain, and it does not stand out from the rest at all. It's just one more sensation. And this means that it's a miracle if you can not only single it out from everything else, but recognize it as a thing called "pain". Additionally, even if I can recognize one kind of pain, it doesn't mean I can do it consistently and it doesn't mean I can recognize other kinds of pain. Because pain is a word that encompasses easily dozens, possibly hundreds, of different sensations. That means that I have to basically memorize which ones are to be called pain and reported to a doctor. This is another thing that has gotten me nearly dead before several times.
Something related to that, is this ongoing discrepancy between my very sensory-based understanding of the world, and the language that I must use to communicate with most other people in that world. The situation with the word "pain" is only one of thousands. Where on the one had I have these dozens of different experiences, and on the other hand there's one word that supposedly encompasses all of them. Or else I have what feels like one experience, but there are several words that chop it up into pieces that make no sense to me because to me it's all one thing, and the pieces don't even make any sense. Or where there's a word that means like... let's say there's two experiences. And this word will mean like half of one experience and a fifth of the other, and maybe even a tenth of a third experience. It makes no sense. It's utterly painful to try to force-fit my life into these word-based categories. I feel like someone who started off with a foreign language, except it's worse than that. Because a foreign language is at least a language. What I started out with is foreign to every possible language. That means there's a constant, painful disconnect between words and my experiences. And it means that at times I get so fed up that I consider any possible words I could choose to be on the order of lies, for all that they distort what I'm trying to say. I work really hard coming up with the right words and even the best words never fit, not even close.
All of these things and more combine into making it difficult for me to carry out complex tasks. I basically need help with nearly everything. And even the stuff that I can do, I cannot do anywhere near reliably. So I get help with even very "basic" self-care tasks that you might not expect me to need help with from my writing. (But expecting anything like that from someone's writing is a bad idea in general, so I urge whoever reads this to try their hardest not to do that.) Unfortunately one of the things I have trouble doing is listing every single task that I have trouble doing. Even things that I can do, I generally need to be "started" on at the very least. Like I won't eat unless someone puts the food in front of me. That kind of thing. So I usually need anything from "starting" help to "every part of it" help with cooking, cleaning, bathing, dressing, getting in and out of my wheelchair, etc. For the fullest list I've ever come up with, see my really overlong post in this thread (that's a link). Sometimes I can do some of these things, but it's like a case of all the planets having to align just perfectly, which isn't something that can be relied upon. One thing that I often say is that I feel as if I have to wait for a "launch window" when all the conditions are right for me to be able to do something. And for the most complex task, the more "launch windows" all have to coincide, which makes it much rarer that I can do the thing. And sometimes I can't even type without help, although most of the time fortunately the presence of a keyboard triggers my touch-typing abilities.
Often the way I feel in my body is as if I'm sort of... very deep sunken below the surface of things, and my body is just doing things on its own. It may move around on its own or it may sit there and be inert, and it's like... trying to talk to it can be like trying to communicate down a bunch of old flaky electrical wires or something. And trying to get information from its senses can be equally flaky. I rely heavily on triggers to get me from here to there movement-wise, like the presence of a keyboard, making sure objects around me are aligned so that they encourage movement without impeding that movement, needing a touch to be able to find my body and remember how to move it, etc. The more that I have to do by myself, the more flaky and fritzy all the connections become, and it's like I'm floating in this place of all these various sensations going by, and don't even feel that I have a body to connect to. When I was first living on my own (and had no official services yet, therefore had to do everything by myself with help from friends), it was so bad that for every single little movement, someone would have to walk me through every single body part, like not just "move your arm", but all the steps needed to find the arm, then move it while I still found it, then find the next body part, move that, etc. Many times I'd just lose everything and have to start over. Getting food or something could take hours even if it didn't involve cooking. Needless to say that very little got done, and I ended up living in a filthy living environment where I urinated in random places and there was mold growing on things and I was grossly underweight from poor nutrition, and just... not a good situation. I've noticed that a lot of people think that the more help you get, the less you are able to do. For me, it's the opposite. The more help I get, the more I am able to do, because it means it's taking up less space inside my brain if it's just done by another person. Without any help, I rapidly devolve into an inert mass just sitting there, or when I was more mobile, sometimes just running around the apartment barely aware that it was an apartment and not just a bunch of scrambled sensations. At the point I'm at now, I may live in bed (I have a number of other conditions including one that requires near-constant bedrest, so this isn't an autism thing), but I have more comprehension because I have to use it less therefore I have more of it. I hope that makes sense. It's as if the more stuff you stuff into my head the less my head will function.
Notice that I've gone through many long paragraphs of possibly over-detailed information about things that are difficult or just different because of the perceptual differences that get me called autistic. Also notice that very few of these things are in the diagnostic criteria. Sure, they're mentioned, but somehow "social skills" is still considered central. For me, there's so much other stuff that both seems more central on a causal level, and more central on a stuff to worry about first level. And the parts of this that are mentioned in the criteria mostly center around language, movement, and routines. Which is one of many reasons I find the new criteria that will center social stuff even more, all the more frustrating. Because social stuff is simply not the focus of "stuff I need help with" in my life. Am I crappy at nonautistic social stuff? Sure I am. But there's so much other stuff to get to before social stuff even shows up on my radar. And I'm still not convinced that the social stuff that does show up, is actually all located in me, rather than located in the interaction between me and the other person, located a bit in both of us and a bit in neither of us.
The way I do relate best to the world is very sensory and sensual in nature. There's a physicality to it. If my motor inertia isn't getting in the way, every sensation is translated into a body movement which is then translated into its own sensations which help me form a relationship to the world around me. And even when the body movements don't happen on a physical level, I can still feel them happening inside my head. (People without certain motor issues don't realize that there's a stage between deciding to move and moving, and that stage feels very much as if one is moving, except -- if things are stuck somewhere along the line -- it never quite gets to the body. And my nonvoluntary/semivoluntary and involuntary movements often get stopped before they get to real movement, but I can still feel them just fine.) The sensations form themselves into patterns, and it's like I'm swept up in the patterns and dancing through them. I wouldn't trade that for anything.
Many of the difficulties I have are always being described as what they're not. Unable to move, unable to think in ideas, unable to understand and/or use language, etc. But an important thing to understand, if you're not aware of it already, is that there are entire worlds of experience beneath language, beneath ideas, beneath movement. And those worlds of experience (not to be confused with the annoying autism stereotype), those are my home. That's where I'm comfortable, where I have understandings that can't be described in terms of the usual forms of understanding.
With regard to social things... you'd be surprised at some of the ways I find that social stuff works when I'm not trying to make it in the language and idea-based ways of thinking world. In the world of language and ideas, then sure, I fit a lot of the autism stereotypes when it comes to understanding people socially and emotionally. Except... except that when language and ideas are dropped out of the equation? Then something odd happens. I map the flow and pattern of people's movement, the tonality of their voices. I perceive who they are underneath all the usual social stuff. I can enter a room with language turned off, and almost effortlessly map the whole social dynamic, the dance of movements that encompasses the entire crowd, the ebb and flow of the sounds of their voices. And I do this in a way that's different from how nonautistic people understand nonverbal communication. And I often seem to be right. But if I try to understand language, or to leap into the land of ideas, then it all falls apart and I'm completely clueless. It's like I can only do one or the other, not both. (But just as when I understand language I do it differently than nonautistic people, again my understanding of nonverbal communication is very different from nonautistic people. Sometimes this gives me an advantage, sometimes it gives them an advantage, both ways have their strong and weak points.)
Another unfortunate thing about all this happens if I try to insert myself somehow into this social dance. Suddenly it's as if everything just crashes into each other and falls apart. Once I'm monitoring my own experiences in addition to everyone else's, it's just too much to process and something has to give. This isn't to say there aren't ways I can join in that don't cause that to happen, but if I do then those ways are going to look very atypical, and they won't involve having a conversation, at least not in words.
Also, I've met people before who have for lack of a better term, my general "subtype" of autism. And what happens, when we interact, is nothing short of mindblowing. It's like, I not only sense the stuff that I can sense in nonautistic people with language turned off. It's like I sense this other autistic person, in a way where I can see all the layers of them, and they can do the same with me. Without words, we can exchange information about our sensory experiences of the world. Because remember how I talked about how the way my body moves, is intertwined with my perceptions of my environment? Well people who are similar enough to me in those regards, they can watch the movement patterns in my body, and understand what aspects of my environment I'm responding to. And I can perceive the same about them. And as long as it doesn't terrify us with the shock of such exposure in front of another person (we can be so used to nobody being able to read us...), the experience can be just... absolutely amazing and highly intimate. And I think one reason this can be so special for us, is that we spend our entire lives around people who don't easily understand us and vice versa. To be understood, it can be a serious shock to the system but it can also be a beautiful thing. And usually, if it's someone able to read me to that extent, it's also someone who's going to respect me, and same in reverse, because they know what it's like to be like me. There's this sense of a deep resonance between us. And this can mean... like if we're both focused on something that we enjoy (even if seemingly not directly interacting with each other), our enthusiasm and joy can bounce back and forth and amplify to intense levels. These are social experiences usually denied to us, ones we may never have believed could ever happen, and are thus even more highly meaningful when they happen.
The fact that these social experiences do happen, suggests to me that for people like me, autism isn't an impairment of social communication. It's rather a set of perceptual traits that impairs certain kinds of socialization with certain kinds of people in certain ways. If a person is blind and has facial paralysis, you don't generally hear of them having a "primarily social disorder", but they are often unable to read visual cues and unable to send out facial-related social cues. I see my sort of autism in the same way. It means that I might not perceive certain things about other people, or I might not be able to physically respond in ways that show understanding, or both, or I might be able to perceive things but not at the same time demonstrate understanding or participate in certain ways. But these aren't because there's a missing social module in my brain it's because I have a whole bunch of unrelated traits that happen to combine in ways that make it hard to socialize with the average person in typical ways. Because of this, typical definitions of autism drive me up the wall with their fixation on the most peripheral aspects of the way my brain is configured. And there's a fair bit of research showing that it may not just be my particular kind of autism that is more perceptual than social in nature (and much of the "this is all social" research has serious flaws in it).
So, all the stuff I've tried to write here, is kind of an explanation of all the things beyond the usual definition of autism that are not only part of my experience of autism, but often quite central to that experience. The usual definitions frustrate me because even though they can be said to more or less fit me (especially if you control for the biases inherent in the definitions, and the biases of the people who observe people like me and write out what we're not good at), they just don't get at the depth and pervasiveness of these traits in my life. The perceptual/cognitive traits that indirectly cause me to be called autistic affect at least some part of every area of my life. And the effects they cause are often very intense and important to me, both in positive and negative ways. And watching the usual definitions of autism it's hard not to go "ARRRRRRRGHnnnnnnnnngh" at their ways of spectacularly missing the point for a lot of us. I don't know if any of this is what you intended the topic to be about, but I basically took the idea of "stuff that's not included in the usual definition of autism but that is so very central to the way autism affects us" and ran with it.
And the other part of the post that I found interesting was the whole way the difficulties with nonverbal communication play out. I know there are many autistic people out there who can engage in various forms of nonverbal communication if we're not at the same time trying to do verbal communication. And yet because of the nature of how our experiences fit together, even we are considered just plain deficient in nonverbal communication when it's far more complex than that. It also reflects how many ideas about autism come from study of autistic people who communicate in words. This means that:
1. People who can use words, are more likely to not be like me in this regard.
2. People like me who can sometimes use words but who find it easier to not use words and who have perfectly valid nonverbal communication when we can't use words... well in the research we're usually being forced to use words, which destroys our ability at nonverbal communication.
3. People who can't use words but who are like me when it comes to nonverbal communication.... well their inability to use words means they can't object when researchers simply say they are unable to use nonverbal communication because their own expressive nonverbal communication is atypical.
4. Since the nonverbal communication that some autistic people are capable of is very different in many ways from nonautistic nonverbal communication, the nonautistic researchers are generally not even looking for it because they don't know it exists. You can't measure something you don't even know how to look for.
Some research (on people with severe receptive language delays, like I had) is beginning to overcome this problem, but it's few and far between. It's all very frustrating though.
And now that I've written you a novel, I'm going to stop. I'm sorry again for the length. I hope you are able to read it and find some interesting things inside it, even if it's way too long. I'm sorry, I can be like an Ent in Lord of the Rings, where every word to them is a whole story, so they have a longer way of speaking because for every single word they have to explain what it means. Interestingly they, like me, were not native to language at all but were "woken up" by people with lots of language, and thus they've developed a long-winded style of communicating based in their deeply sensory and memory-based understanding of the world around them. (So for instance a "hill" is not just a "hill", but the entire story of that particular hill and its attributes and its relation to everything around it. This, this is why I so often cannot be concise, and it's such a wonderful description of how I see the world in a much more "dense" form than most people do.)
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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
06 Nov 2010, 9:59 am
