My sort of people, just as real as theirs.

Standard

I have wanted to write this post for a long time. Like many posts I have written, I have written bits of it but never the whole thing together. The catalyst that is finally making it possible to write it is a sad one rather than a happy one, though. Even though the topic itself is happy. I’ve once again found my entire life pretty much rejected by someone whose life has followed a pattern closer to the dominant stereotypes of what an autistic person’s life looks like. Why? Because I am different than them and a few people they know, and don’t really make sense to them, so it just follows that my existence isn’t valid or real.

The systems of privilege among autistic people are complicated. You can’t really just say one person has more on some absolute scale of privilege. But there is a form of privilege accorded to those autistic people whose lives follow any of a number of patterns. Those include people who most seem to resemble the most dominant stereotypes of autism, and also those whose experiences are the most commonly discussed when autistic people get together and discuss such things (even though which experiences get discussed is also related to which fit the stereotypes… and on and on in more levels of complexity).

I became aware of all this when I first encountered the autistic community online. I was just barely an adult, just barely learning to connect thought to words in any lasting way, and feeling as if I was just falling and falling when it came to the skills most valued by society. Speech was there, but for huge parts of the day (more and more of the day) it wasn’t. I fell out of a tree for the first time in my life that year, and my motor skills were becoming interesting in all the wrong ways.

And as I entered chatrooms and mailing lists, there were things I had clearly in common with people but what stood out to me were the differences. Why did everyone else seem to describe puberty as a period of sudden advancement when for me it was when everything I thought I had painstakingly gained fell apart? Why did people describe some things in a way that didn’t make much sense to me? There was more belonging here than anywhere, but at the same time I kept wondering if there had been some massive mistake when I was diagnosed. I only really knew a handful of people, and virtually nothing about autism, or about systems of privilege, or the way our experiences were measured against professional standards. I was only 18 years old, and very… I don’t know the word. Meek, passive, terrified of going against the rules while aware I was made in such a way that meant I would never in my life be able to follow them. Mixed up. And so on.

But as I met more and more autistic people, something began to happen when I least expected it. People began to pop up. Here and there. And we made instant and total and amazing levels of sense to each other. In everything from described experience to body language to… all kinds of things I never in my wildest fantasies of “finding my people” had ever expected. People who, as I sometimes put it, didn’t need to come in my front door because they were already inside. I don’t mean we were identical, far from it. But we were made of the same stuff, and enjoyed an ease of communication I had never believed possible.

These people helped me figure out more about my own abilities, difficulties, and general place in the universe than I had been able to figure out on my own. Like I described in a recent post, we were separate, no untoward boundaries were crossed, but we resonated. Powerfully.

It was also clear from the way things were playing out that whatever we had in common was not just wishful thinking. We varied as to which of us first described some particular aspect of our lives. Often many people individually and separately came up with similar descriptions. You can never be 100% sure two experiences are the same, but we were as close to sure as we could get of what we had in common.

And these people were all also, like me, put into the category of autistic. We were far from the largest or most dominant grouping of people, but someone had seen fit to put us all in that category despite all that. (Doubtless one day other groupings of human beings will happen. They always do. But in today’s groupings, this is where we all ended up in the end.)

But as for which of the professional categories we were put into? All of them. Sometimes one single person had been put into several. LFA. HFA. Asperger. Autism. PDD-NOS. No rhyme or reason to it. But we’d all been called autistic.

I also don’t want to make it sound as if this was some kind of absolute thing. It wasn’t. It also wasn’t planned or expected. And it wasn’t that we all had identical characteristics, just that within the forest of autism we were all different varieties of oak trees, or else trees closely related to oaks.

The thing we had the most in common is the hardest thing to describe. A perceptual state, a way of relating to the world around us, which there were no words for but which was recognizable to each other. In an inadequate shorthand, these are some things we recognized in each other. Please note that while some things are more stereotypical than others, we have no choice how close or far from the stereotypes we are. These things just exist, and these descriptions are the product of lots of conversations among ourselves about these matters, not the product of any single one of us:

1. Mutually comprehensible body language. To an almost frightening degree, to people who were used to being shielded in a way by the fact that most people couldn’t read us.

2. Trouble understanding language. By which I don’t mean mishearing words, but rather existing most of the time in a state where language did not make sense. And this totally irrespective of how fluent we appeared in speech or writing — many of us had learned to fit words together as patterns of sound before understanding a single word of it. Meaning did seep in over time but in an unusual way and very prone to vanishing again. Never at home in language regardless of whether we are excellent writers/speakers, or people who can’t write or speak a single word. Always requiring effort. And always starting from a “level” much “below” that of language even being something we have thought of.

3. A way of learning certain common skills where we might be able to perform a skill, even at a seemingly high level, then having it disappear as if it had never been there and having to relearn it from scratch. Sometimes this would happen once, sometimes many times. We could try to learn these things, manage to perform like building a house of cards, and then a gust of wind would blow it down. And starting again from scratch. The best description I have ever heard of such things came from Jim Sinclair’s article called “Bridging the Gaps”:

I taught myself to read at three, and I had to learn it again at ten, and yet again at seventeen, and at twenty-one, and at twenty-six.  The words that it took me twelve years to find have been lost again, and regained, and lost, and still have not come all the way back to where I can be reasonably confident they’ll be there when I need them.  It wasn’t enough to figure out just once how to keep track of my eyes and ears and hands and feet all at the same time; I’ve lost track of them and had to find them over and over again.

4. Having a different way of learning where things fit themselves together slowly over time, and are more likely to stay put. The main problem being that this isn’t something we can do on demand. It just happens. It is slower, more unpredictable, “behind one’s own back” and cannot be relied upon to produce any given wanted result. And the skills learned may not even be skills that have a name or a concept for them in most people’s eyes, so may be considered nonexistent or worthless.

5. Having a highly unconventional way of perceiving the world. Usually of a specific kind that is still hard to describe except for describing what it is not. Perceiving color, shape, texture, tone, etc. without easily or automatically perceiving something like “table”. This being another variation on the same thing that makes receptive language so difficult. Anne Corwin describes this:

I would probably walk into the room and see “check patterns” before even being able to identify the door as a door and the tablecloth as a tablecloth! I tend to be incredibly clumsy and easily overwhelmed in new/unfamiliar settings because it takes me a long time to figure out where (and what) all the “macro-objects” are. When I go to a new place for the first time I sort of need to scout and scan all around it like a cat before I can really navigate effectively. The process of “resolving patterns and shapes and forms into familiar objects” is actually a semi-conscious one for me.

I was talking to some other people about this phenomenon once, and one thing that came up was that some of us in that conversation (including me) often tend to sit on floors and other surfaces even if furniture is available, because it’s a lot easier to identify “flat surface a person can sit on” than it is to sort the environment into chunks like “couch”, “chair”, “floor”, and “coffee table”.

6. Having stayed in that mode of perception long enough to have developed ways of understanding and navigating the world that can be done without having to leave that mode of perception. This is sort of where all those patterns slowly coming together and growing more complex with time comes in, in the mode of learning I described earlier. So perceiving the world sort of as if we are moving through this sea of colors and textures and sounds and smells, but having learned to understand and navigate that sea without having to pop into “gee is that what they call a table?” mode. And having “table mode” be one of those exhausting things we may be able to do or even do well but that just plain doesn’t fit with us and easily drops away again.

(Sometimes I describe the last two things and people go “Oh it was like that when I was three.”. But for us it is still like that. Except having grown up and learned the whole way, it’s not as confusing as it was when any of us were three.)

7. Instead of having abilities that are locked into one mostly unchanging pattern, having abilities that are engaged in a constant shifting set of tradeoffs, whether you want them to or not. So always being in flux, never being certain what abilities will (and won’t) be there next, and thus seeming really inconsistent on a lot of levels.
Here is how I once described this:

Storks do not fly long distances under their own wingpower. What they do, is catch hot air currents called thermals, and use them to assist their flight. This does not mean that they don’t do any work, but that they have to keep track of exactly where to concentrate their work, among a shifting mass of air currents.

Well… that seems to be how my mind works. There are all sorts of things equivalent to thermals: Perception, movement, communication, language, contemplation, etc. They’re always shifting around, and I can’t always be certain that something’s going to be there at any given time, or what form it will take when it’s there. I have to plan my life around this kind of unpredictability.

This does not mean that I am simply carried around without having to do any work, but it does mean that there are some areas where, for that moment, all the work in the world won’t do much of anything but wear me out, and other areas where the work I put in goes further. It also means that what I set out to do isn’t always what’s going to happen, and when it does happen it can be through a roundabout sort of route.

There is more. There is much more. There is always more. But the English language was not developed by or for people like us, leaving me always feeling impotent and repetitive as a writer when I try to talk about this stuff. I tried harder than I have ever tried in my life when I wrote my article in the current Disability Studies Quarterly, but still, there’s that language barrier. So if I didn’t get something quite right, chalk it up to that, I can’t sit around trying to perfect my descriptions all day and have already described many of these things in depth individually.

Call that a subtype of autism, call it a bunch of people who happen to find that we have things in common and who are also considered autistic, whatever, that’s just words. But these are things that are important to the people experiencing them, not just to the professionals observing us. We are not better or worse than more stereotypical autistic people, just different.

Anyway, I have found that… there are people who read descriptions like this and go “WTF how’d you get into my head?”

To such people, at least a big part of those descriptions is going to be really familiar. They might or might not suddenly be able to add onto such descriptions themselves. But they generally find this incredibly familiar and intuitive, the same way I find similar descriptions from others. And they will easily see how the pieces fit together.

Others go “Bits of that sound familiar.” it may or may not make sense as a whole but they have at least some things in common.

Others go “WTF that’s totally alien or even opposite to my experience.”

That third group? That’s where the privilege comes in. Most people from that group are people who say their experience of autism is similar to professional accounts, or similar to the group norms that have developed in parts of the autistic community. And that means that if they choose to react to this unfamiliarity with some combination of dismissal, scorn, disbelief, etc… then a lot more people will listen to them than to us.

In the autistic community there is a stereotype that says that autistic people all think in a way involving much more of the “that is a table” stuff than I use. That autistic people’s abilities are very stable in the long term. That there is only one direction of “progress” and that is the direction even most nonautistic people say is forward. And Temple Grandin may be responsible for a lot of this, especially the idea that autism “grows less with time”.

Is that a valid version of autism? Sure. Is it the only one? No way. I have talked to a lot of people who just have trouble grasping how people like me work.

The other option, besides grumbling about us not being autistic enough, is to either say “That’s different than my experience, but, meh, whatever, we are all different,” or to even say “Wow, that’s different than my experience but it’s sure interesting, tell me more if you want to.” Either of those responses is sufficient.

Having to listen to autistic experiences different from our own is something those of us with experiences in the minority do all the time. We have to. We are outnumbered. It would be nice if instead of going “how can you possibly call yourself autistic,” people with the majority experiences would just learn to accept that theirs are not the only autistic experiences on the planet.

I have actually gone into more depth than most people I know of to learn the different experiences autistic people can have. I listen. A lot. And it’s endlessly interesting to hear how those of us who share a label both resemble and differ from each other. This is one reason the people at MIT find me useful, because I have delved heavily into the many lived experiences of autism and can tell them if I have heard of anyone having a particular experience (either directly through autistics or indirectly through parents or professionals). They also say I am unusual in that I don’t just repeat what the professionals say about us, I instead am very aware of the multitude of different things we say about ourselves, and the influences of the thought of different professionals on the stuff we say.

It’s a fascinating topic if you’re interested in it. But you don’t have to be into learning that stuff, in order to give people with the less common (and/or less commonly discussed in the autistic community) variants of autism the basic respect of believing what we have to say about ourselves. Because that voice in your head that says “If it differs from me or people I know then it must not be real?” That’s ableism. And to the many people who have written to me in private to say they have these experiences but fear telling about them in case they get rejected or called liars? That rejection from even other autistics of all people, the people they expected compassion from, that can be devastating.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

36 responses »

  1. I didn’t realize that these things were in the minority. I may not experiences these things in as dramatic a way, but what you describe is definitely familiar.

    For instance, when I used to have roommates, I could see a new object in the house and know it was there and that it wasn’t a problem, but it would take me days to think about what it actually was and ask why it was there. I also have to make a choice sometimes between putting my focus into understanding receptive language, including body language (to the meager extent that I can understand it) or forming outgoing language. At least one person found my mannerisms (or lack thereof) off-putting, because I was trying to organize all the input going on around me. And then when I got to a point in my life when a lot of pressure was taken off, part of my brain decided to take a vacation and I had a much harder time forming language, making eye-contact, etc.

    I like the stork analogy and will try to remember it when people remark on my “high functionality” :-)

  2. You know, I don’t know if we are in the minority among all autistic people. There is very little way to know that. But I do get a strong sense that we are in the minority when it comes to both the autistic people who talk about their experiences in online or offline groups of autistic people, and also those of us who write books. I don’t get the sense that we are the smallest minority either, but I don’t see us as often as I see a bunch of other sorts of autistic people. I have seen small places where lots of us end up clustering, but, well… small.

    I see a lot of people who:

    * Have incredibly stable abilities, little to no storkishness.

    * Learn in a way where they keep what they learn. Do not have to relearn something a zillion times.

    * May have trouble making out what is said, but seldom have trouble even “rising” to the level where language exists as a concept.

    * Either have always understood words, or had trouble understanding them but then figured it out and had no trouble since. This even includes many people who have never spoken (and who I have a huge amount of trouble relating to)

    * Think in a way that involves putting together words. Or putting together symbols. Or putting together pictures of things that are more or less perceived in “I understand this is a table” mode.

    * Learn and “progress” always in the direction that most people would consider “forward”.

    * Think of “sensory issues” in terms of sensations that cause overload or pain, but get really confused at talk of having trouble getting out of “rawish perception mode” and into “I understand this is a table” mode.

    * In fact, spend the bulk of their existence in “I understand this is a table” mode and may have serious trouble imagining not being in it except possibly in the most intense stages of overload and maybe not even then.

    * May have had trouble learning to speak. Maybe not. May never have learned. But if they did learn speech it was more or less (with a few exceptions) similar, perhaps slower, perhaps very slightly jumbled or skipping a few steps, but still similar to the usual ways of learning. But get confused when some of us talk about learning the patterns of words without knowing the meaning or purpose of words. Or when some of us talk about speech learned in such an unusual way that we cannot, or cannot easily, wrest control of it to communicate our thoughts. Interestingly this can even be true in people who might have smaller than usual vocabularies or other speech impairments.

    * Use something like “logic” as a primary way of thinking that is comfortable rather than strained or painful.

    Again, these are just lists of some of the ways people can be different from what I have described, and particularly in the direction of “ways people work that are either most common or dominant that I have seen”. Not meant to be the only other way autistic people can be, we are much more varied than that.

    But that sort of description is far more common overall than what I have described. At least among people who are describing anything at all. And those are traits most often (but not always) held by people whose reaction to descriptions like mine is “But that makes no sense!” I see clashes like that all the time in forums, and I especially notice how few we are on threads where everyone is supposed to describe their experience with some aspect of life.

    It may be artificially larger than it is though because of people who just go along with the most dominant story or people who fear to differ from it.

  3. Oh and another thing that happens is people tend to conflates both speech and typing with communication because, for them, they are the same thing. They learned them at the same time. They cannot imagine learning speech or typing without either already knowing how to communicate or learning communication simultaneously. And they would get even be more confused by, say, speech that is 5% communicative or other things that aren’t all or nothing.

    A real exchange I have had several variations on:

    Them: When did you learn to type?
    Me: Well I learned the mechanical act of typing when I was nine or so.
    Them (in a hostile way): What do you mean the mechanical act? Typing is typing! You can either do it or you can’t!

    Hint for anyone who doesn’t know the difference: It’s fine to ask. It’s not fine to assert that you just know I am talking nonsense because the idea of typing without communicating is new to you. Especially if I’ve already explained that for me the two things are separated.

    Another hint: If you know that someone is talking about something that may be unfamiliar or out of the ordinary, incredulity does not help. The person might already be aware they have an uncommon experience and be sensitive about people not taking them seriously.

  4. Just curious to know your opinion on this: Would you say that inertia could be an aspect of the storkishness that you describe? Because for the past 2-3 years, it has been becoming more and more prevalent for me. I wasn’t as inertial as a teenager as I am now, and until I got dx’ed (which was a bit of a surprise) and began looking up the experiences of other autistics online that I was able to realize that there was a potential that the inertia could be connected, at least some of the time, to being on the spectrum.

  5. It is interesting, I feel the similar oak tree variety thing with your writing often. On this there are points where I know I am there but have had to adapt to survive so that part is disconnected. On other things, such as the learning or understanding words as words it is less so but still there. I am somewhere between expectation and variation I guess. Thank you for this, now I know that when I have to describe the thing over there I want you to see and or pass to me and or clean and or do something with and then the action, this isn’t just me.

    Please pass the jello becomes “Can you do this with your hands” a grabbing motion then a swinging of the arms “to me with the wiggly slimy green thing on the thing that is shaped like “making a circle motion” and is red so I can put some on this?” tapping my plate. Dinner at the table is not my friend.

  6. Firstly, I can relate to tons of this (but you likely knew that, as I’m pretty sure I have the same “subtype” or whatever it is, outward appearances notwithstanding).

    Secondly, while I do thing some of the appearance of this configuration being a minority is due to fear and privilege and such, I really do suspect it might be a lesser-known way to be, simply because so much of it happens internally and for a lot of us I’m sure describing it only happens over a period of years, often out of desperation at people just getting it wrong so much and that having awful consequences for us.

    (I might say more later but it’s been a long day and my brain is pretty drained at the moment.)

  7. Your abilities and disabilities certainly are different than mine. All that means is that we’re different people. I’m glad that you’ve found your own niche, and have others who understand you so well. As for those who don’t understand or accept, their doubt has absolutely no effect on who you are, so it doesn’t matter what they think.

  8. Your writing was one of the things that sparked a lot of recognition in me when I first started exploring more about autism on the internet. It’s been a very valuable resource for me and has also taught me a lot.

    I think I’m somewhere in between “I recognise and experience most/all of this” and “I recognise bits of this”, hanging a little more towards ‘most’ than ‘bits’. Also in the way of, I experience this but maybe not so deep/big (can’t find the right word).
    All in all, I have recognised myself more in your descriptions than any professional descriptions, although I recognised enough in the professional descriptions to realise that the autism label would apply to me.

  9. Some of that seems familiar intuitively, some of it doesn’t. The words thing stands out to me and it does both. Words are an important way of how I understand the world, but it is like I am using a completely different frame of reference from others in how I understand them. The words I have to use when I describe myself or what I want or need never fit, because they always mean something else from what I want it to mean. Then it’s like I can’t express myself with those words. I feel like I am expressing someone who is not me, someone who is made out of those wrong words that end up meaning nothing to me. I don’t even know what logic is necessarily, even though I think I know how to use the word, and indeed do use it to describe things.

  10. I have gotten a comment from a Lisa Chadwick that violates my comment guidelines so it will not be posted. It claims some of these things are common among autistic people (if so, then I haven’t seen a majority of the hundreds of autistic self-descriptions I have read describe them) and the rest are the result of a nonautistic person pretending to be autistic. If this is so, I wonder why Lisa has singled me out and never gone to, say, Anne Corwin’s page and called her nonautistic despite her being the closest I have ever seen to my own experiences. I suspect it is because I am the target of the week, and not Anne or any other commenter who has recognized themselves. So it is fashionable to trash my experiences while leaving others with similar experiences alone, just as the woman whose nonsense started this post has commented freely on the blogs of people among my subtype but singled me out among everyone with the same sort of experiences to call such things nonsensical.

  11. Norah: I think another aspect of this sort of thing is that these are as Anne said internal experiences while descriptions of autism are mostly external combined with oft-ridiculous guesswork about our insides. I had to learn how I appeared to other people before I could understand how the external ones fit me, but I identified heavily with many internal descriptions. The external ones feel tangential to who I am while the internal ones feel central. And it wasn’t until I realized how I appear to others that I understood why I had been diagnosed.

    That’s one reason I find self-identification more valid in many ways than professional diagnosis. I had to go through the same process as a self-identified autistic before I could understand or accept my professional diagnosis.

  12. Littlewolf: For me inertia is part of a movement disorder I have that makes starting, stopping, combining, switching, etc. actions difficult. (I am partially quoting from Martha Leary’s work.). For me, it has grown more severe with time and is part of the reason I use a wheelchair. But I suspect the inertia thing is another expression of something similar. (And yes it seems tied to autism whether it’s progressive, stable, shifting, mild, severe, whatever.). If you go to Disability Studies Quarterly, a paper by Leary, Hill, and Donnellan describes something about this. Hill is autistic and diagnosed with early onset atypical Parkinson’s. While I am diagnosed as having a “autism-related parkinson-like movement disorder”. We have talked to each other and have some quite similar experiences. I have also talked to Martha Leary in depth. There is some really good stuff written about this aspect of autism, which I did not touch on in my post mainly because it is so complex.

    I have meant to write some about the fact that it has now gotten to the point that many automatic movenys have been affected by this extreme motor inertia. I have had both many of my tics and many of my automated repetitive movements stopped in their tracks. The odd thing is that it feels inside as if I can feel the movements and vocalizations trying to happen. But few to none come out and my body feels still. It’s bizarre and disconcerting as well as making it harder to benefit from the effects of those movements (they often seem a part of how I understand or handle a lot of sensory input). I have been told that people with Tourette’s often feel the same on neuroleptics, which themselves cause pseudoparkinson effects. But whatever it is feels incredibly weird, in part because I could never feel my brain trying to make those movements, back when they always just happened.

  13. Amanda, after reading your piece, I have to admit that I simply don’t understand those among us who won’t believe your description of your own experience. To me, it makes no sense. Why would anyone concoct a story and describe everything in such vivid, brilliant detail? Power? Glory? Just to screw with people’s heads? How absurd. I’ve had people screw with my head in other ways, but not in THAT way.

    To me, the diversity of human perception is so fascinating that I have the same hunger for hearing about it that I have for seeing color, texture, and pattern. There are parts of your experience that resonate with me very much and other parts that don’t. So what? Who cares about uniformity? Only the scientists who want to put us into little categories, along with the people who want to be loved by the scientists who want to put us into little categories.

    To me, the scientists don’t matter. I’m an expert on my autism, and you’re an expert on yours. And progress? How does one even define that? In my 50s, I am far less “functional” in conventional ways than I was in my 20s and 30s, but far more “functional” in ways that matter to me. In other words, I’m happier now than I’ve ever been before. I don’t think they’ve come up with a disgnostic test to cover that, because it might mean that they’d have to rewrite their diagnostic tests altogether.

  14. Re. you (Amanda) getting more harassment, etc., than me, believe me, I don’t think that is even remotely fair. Of course I don’t wish for abuse in order to assuage my “obviously I have some privilege in this area” guilt, as that would be both counter-productive and pointless.

    But I do want to state for the record that I stand behind you, both as a friend and a fellow autistic person, and that I think it is utterly ridiculous that “not being relentlessly harassed” ought to even BE a privilege one comes by through sheer luck, as opposed to just the way things are due to common human decency.

  15. Yeah it is a truly bizarre thing. Of course people tend to perceive you as massively “higher functioning” than I am even though autism-wise we have similar abilities and difficulties in almost all areas. Although I bet you would get harassment if speech finally switched off for you one day. Because then they would go “eeek you’re claiming to be low functioning” even though you never would any more than I would. But then maybe not, as I don’t see anyone going after Cal Montgomery who lost speech later than I did age-wise. So who knows. The weird thing is I mostly see the presence or absence of speech as about like hair color, and other people see much more in that distinction. (Yes there is a massive privilege gap, but that’s true of other superficial characteristics too.)

  16. Hi Amanda

    I don’t really “get” your experience of the world, but I have been in enough institutions over the years that I don’t bother to even ask people their diagnosis and it is obvious to me that most labels do not do justice to the people they describe and generally cover a wide variety of cases.

    It took me about 10 years to feel comfortable in the online world, as I was only really used to people entrenched in the psych system, and the internet folk seemed so normal and/or advanced technologically (I really missed out on computers when I was in institutions), but eventually I found i could fit with people.

    At first it was individual experiences that clicked but no-one seemed to have a very similar combination. Now i feel I belong as much as most people. I don’t know if that is what you mean. I’ve never felt “autistic”, because there is something exclusive about that, and I don’t think there is one or several types of autism (although I think you do), the people I gel with can have various labels or none, and the reason I gel with them may not to be about their neurology at all.

    When I was young, we moved house a lot and I kept having to change schools and make new friends. I found it odd that my BEST friend always turned out to be someone who happened to live very close by, so that I could see them outwith school, until I twigged that my liking people is not really about their neurology or special outlook, but how accessible they were. Then in hospital, the ones I made friends with tended to be those who were initially admitted at the same time as me, or who had similar backgrounds.

    So I guess my view of personality and compatibility is that it is more to do with social circumstance, whereas you seem to view it as more to do with psychological experience of the world? (of course the view I have is itself a psychological outlook, and when you talk of experiences, they are social too, so I may be making a rather artificial distinction.)

    I certainly don’t think you are a fraud just because you have a different outlook from me.

  17. I should probably say that all-in-all I’m probably in the majority, i.e. as opposed to the minority you describe. However, my own bias is that these things are a matter of degree and not necessarily distinct categories. I highly suspect that the more an autistic person has self-examined than the less incredulous the person would be. This relates to what you said about being more self-examined than most autistic people. Clinically, I fall squarely in “Asperger’s” but I can read Donna Williams, Temple Grandin, your, or just about anyone else’s writings and find that aspects that I relate to (and it’s always much easier to relate to than it is to relate to typical people).

  18. Amanda: yeah, and I have definitely had days/periods of time where speech HAS shut off for me, at least in the sense of it being communicative.

    And when that’s going on, I tend to walk around with this massive sense of dread, i.e., “ok whatever mouth noises I end up making, I am going to be paying for it later”. When that whole issue could be solved by being able to type or write.

    Which sometimes I do, but not nearly enough as I am sure it would benefit me (and others who cared about actually knowing my real thoughts).

    I know that the ability to talk communicatively at all is a kind of privilege, as it lets me pass as more “consistent” to people who’ve gotten it into their heads that I’m Super High Functioning or something, but like you I don’t see it as a hugely important characteristic. During times when my speech is worse / less effective / not really there, my life does not become somehow objectively worse, the only thing that makes it more nerve-racking is knowing the crap I get from trying to employ alternatives to mouth-sounds.

  19. Marcie: I totally think a lot of these things are a matter of degree. And also there are those who swing back and forth between the extremes. It’s also rare to me that an autistic person has absolutely nothing to identify with, although it’s happened. But there are definitely people where the bulk of our experiences are mutually incomprehensible.

    I didn’t mean to make it sound like these were utterly discrete categories, nor that there are only two. I was just sketching out what happens when people of certain kinds encounter someone like me (or someone in any other sort of person far from the stereotypes). Where my experiences are literally incomprehensible to them. And how at that point they are the ones with the power to accept or deny my explanations.

    Rachel: Yeah I love finding out about other types of people. That is one reason I have a huge collection of autiebiographies. Very few are much like me, but the variety among us is interesting. With people very similar to me there are interactions I can have on levels I can’t do with anyone else, but in interactions with people different from me there is the excitement of building a bridge between two totally different sorts of people. And both are deeply rewarding.

    I also feel like I have made progress in all the areas that matter. I am happier, more ethical, less selfish, better at real communication, and better at using my native modes of perception instead of having to try to build a foreign structure on top of myself. But all some people seem to care about is the flimsy facade that has gone missing (and that served to cover the fact I hadn’t learned a lot of skills ever), the speech, and some elements of motor skills. I am still the same person. But a few superficial changes and people act like I was two different people.

  20. This is kind of… not so much a direct reply to anything you wrote as a sort of summation of our thoughts on some similar topics.

    There were a couple of people we met over the years since we first got online, before we actually got into the autistic community, who seemed in ways we couldn’t describe like they had something really, really important in common with us– cognitively, creatively, spiritually, etc. Because we were so desperate to connect to them as “our people,” and didn’t have any ability, for the most part, to explain in words why we felt they were like us even if all our experiences hadn’t been identical, we’d basically start echoing the exact same types and patterns of language they used, and in some cases claim our experiences had been much more like theirs than really were. I guess it was mostly about desperation– both in the fear that they wouldn’t listen to us if we didn’t claim our experiences had been exactly identical, and desperation to have words to throw at other people to explain ourselves right now, this instant, when we’d never had any words before, or anything even close.

    And that also led us into some messed-up situations in which we ended up mimicking the types of language used by some people who used language manipulatively or abusively or sometimes glamourously, as a kind of obfuscating shield. I know that we caused some people to mistrust us or to see us as jerks, because of that, in the past. We also took the ways in which we’d tried to distort our life to give a version of it that seemed more like these other people’s lives, and tried to believe in the distorted versions as the absolute truth. That part was more because we were just desperate to have a version of our life that was simple and made sense and fit a pre-existing pattern, which it never had before. And it seemed at one time like everyone else in the world, both the people we connected to and the ones we didn’t, had this neat, clean, streamlined story about their own lives, which we wanted to have so badly.

    So I think we ended up being a little gun-shy about jumping to tell anyone else “that sounds just exactly like me” (well, that plus having been accused of just wanting attention in the past plus having been messed with by people who got close to us and learned a lot of personal stuff and then betrayed us, or used what they knew to bully us). Even if something does sound incredibly similar to our experiences. Because we don’t want to see more similarity than is there out of desperation, and we also don’t want to make it look like we’re trying to impose friendship on anyone or anything. The similarities that we think we see might be very real, but we’ve still got this filter-based thing on “imposing on people,” especially when filters insist it will be interpreted as an attempt to isolate someone from their pre-existing friendships and try to enforce ourselves as “the one who understands them better than anyone.” (We did, admittedly, try to do that a few times, though I think the last time we really tried it was over ten years ago. OTOH more recently we’ve had a few other people try to do it to us, to push us apart from other friends and insist they were the only ones who really understood us.)

    That, and we’ve got tons of stuff we’ve attempted to write about our cognition, our experiences, our childhood interpretations of various things, etc, that are languishing in a huge drafts folder. If we could ever get them finished and posted anywhere, those might give people a much better basis to judge from on how much we’re actually like them, but finishing them is… hard. Like, they usually start out of involuntary hypergraphia and end up bogged down in some degree of inertia hell.

    And I feel like we should finish them eventually, not even so much so people can decide whether they’re like us or not, but more so that people can know they’re not alone and that their experiences aren’t isolated ones, if they are anything like us. We were actually heavily discouraged from that for a few years by someone whose judgement we trusted too unquestioningly, because they kept mocking people who came into plurality comms and asked “has anyone else had this experience”– supposedly, it “shouldn’t matter” if anyone else has had it or not, you should just accept that it’s “normal for you” and not care if anyone else can relate to it. Which, well. There’s… kind of so many things that seem to be wrong with that idea now, we’re not even sure where to start. Though the fact that knowing people who share your experiences can help you understand yourself better in ways that can be literally life-saving is just a part of it.

    And we’ve heard from enough people to believe that we’ve done some small amount of genuine good in the world, who said that reading our page was what made them decide that their experience of being plural was valid, that they weren’t faking or making things up. We’ve heard from people privately who said things like “I thought we were doing it all wrong, I had no idea that other people’s systems worked that way too.” There’s a lot of crap we’ve seen come out of people attempting to force themselves into a model, believing it’s the “only true way” to be plural– I’m not even just talking about the psychoanalytic DID model, having ideas about there being only one specific way to be a “natural/healthy system” can be every bit as confining and harmful.

    And we’ve very definitely noticed complicated systems of privilege within plural communities also, and what is privileged can be totally different depending on whether you’re coming from the clinical or non-clinical ends of the community. Actually that seems to be true of anyone with a psychiatric diagnosis at all, with sub-hierarchies of privilege within each “category” (whether or not we agree the categories are even useful as a way to classify who’s had what experiences, and in most cases we don’t.)

    And we’d like to… put some of that same stuff out into the autistic community that we have into the plural community, to network and cross-pollinate ideas. I think part of it was that by the time we started reading writings by other autistic people, there were already people who’d laid the groundwork, describing experiences beyond the bare basics in great detail; and in the plural community, that groundwork barely even existed if your experiences didn’t fit the clinical model, so even our writing out what we thought were very basic and obvious things apparently was really something that hadn’t been attempted before.

  21. Thanks for your reply and for the suggestion of looking in DSQ for information on inertia. (I enjoyed reading your article in the current issue, BTW). I hadn’t thought of looking there, and I really want to figure out more about this aspect of my life as an autistic.

    I also really like to learn about other autistics (not in some creepy way that, using your phrase, expects people to be ‘self-narrating zoo exhibits’, but in the “If you want to share about yourself, I would be interested in learning” way.) I can’t say that I’ve ever had what you describe, with the bridge-building with someone different or the connection with someone similar, but I would like to have the opportunity to do so some day. (I’ve never had the chance to meet any other autistics in RL, which saddens me.)

  22. …that all said, a lot of what you’ve mentioned, here and elsewhere, does sound very, very similar to some things we do. Like the gaining and losing and gaining and losing skills over and over. And learning through having patterns assemble themselves slowly in our head (we finally figured out that a major reason why learning anything in any academic environment was/is such a total crapshoot for us, is that most people apparently have much more conscious control over being able to synthesize various patterns and various bits of information into a “big picture,” from which they can extrapolate the necessary cognitive methods to solve various problems, than we ever have. That and being able to switch between and call up various kinds of cognition on cue in general). Some of the stuff you describe about perception sounds familiar too. (It took us 25+ years to figure out that one of the reasons our living environment is frequently a mess is that any object we aren’t immediately using seems to occupy the same cognitive category for us as, say, walls– it’s not so much that we believe we shouldn’t move it, it’s that it gets interpreted as a type of thing that our brain assumes, as a foregone conclusion, is not moveable period. I don’t know if that makes any sense as we’ve described it.)

    I also wanted to say that from the start, we’ve been really disgusted by how your various trolls and people accusing you of being a “fake” have treated you, and like AnneC mentioned about herself, we completely stand behind you. I guess… one of the things that recently got stuffed into draft folder stasis, even though we very much want to write about it somewhere, was about our experience in various communities when we first got online, especially on Usenet, with flamers and trolls and trashers. And what a massive difference it made for us at times to have even one person backing us up against a horde of trashers. (In a way that wasn’t the damsel-in-distress crap that Kowalski mentioned in her recent post, but more like letting people know, unequivocally, that there is absolutely no excuse and no justification for what they’re doing and that you will not go along with it.) And about the times when we thought someone was backing us up against a person, system, or group who was attempting to trash us, but was actually desperately afraid to lose favour with them, and so would pay lip service to caring about us, while letting the trashing go unchallenged or even joining in on it.

    Basically, after having something like that happen to us, even if a much lesser version of what people have been doing to you, we try to avoid at all costs giving in to the demands of people pressuring us to trash on another person. It’s not that we think we’re completely morally invulnerable or anything– we think it’s actually more dangerous to fall into the “I am too moral to ever be capable of evil” trap and leave yourself wide open to be manipulated in the name of “goodness”– but it does at least seem to be one line where we get too disgusted with ourselves to pass very far over it.

  23. I’ve been disappointed to see less and less thoughtful & critical discussion on fora about diagnostic criteria and theories about autism over the years. And along with that, less “here is how it is for me even if it doesn’t fit the official description — anybody else?”

    Nowadays, they seem dominated with discussions that dissect people’s experiences against the DSM, rather than people looking at their (and others’) experiences and dissecting the DSM (and Theory of Mind, and lack of empathy, etc) against those.

    I was lucky enough to be around some autistic discussions before Asperger’s existed as dx. It left people like me (passable, never dx’ed with autism) in an interesting position — no autism dx, and far from any ‘typical’ picture of “autistic disorder” (hate to put it that way, but not sure how to say what I mean there), but yet finding commonalities and various shared experiences with others, some of whom were dx’ed autistic, PDD-NOS, etc, some deemed “low functioning”, others “high functioning,” some verbal, some not — like you said, it didn’t correlate with the official categories at all. It seemed clear that the experts had messed up. As if they’d drawn a political map, when an elevation map was needed.

    And then the Asperger’s dx came along. Things seemed ok for a while, but slowly, there seemed be more focus on the official criteria and less on “grass roots” ideas about autism. Then the issue of fakers would pop up here and there. Then boogeyman stories about legions of fakers in our midst. And then turf wars, and “all self-advocates are self-diagnosed/identified (and are thus not autistic).” And on and on.

    In a strange way, I think Asperger’s becomming a diagnosis has lead to a lot of divisiveness. I think it may have unfortunately lent strength the the medical model, as people seem to want to appeal to authority to feel secure in their status — especially after witnessing non-standard-experience people & self-identified people being assaulted for being so.

    A bit of externally-induced self-divide-and-conquer, probably not deliberate, but what usually happens when large, rigid power structures overlay themselves onto things.

    But then I don’t read too many fora, so maybe I’m seeing a skewed picture and over extrapolating. (Which I kind of hope is true.)

  24. Anne: When you talked about the crap you get for using alternatives to speech, for some reason I remember a bizarre conversation I had with a “friend”. It was during a time period when I had already been spending large chunks of the day incapable of speech, but had just gotten a keyboard that I could use for whatever period of that time that I was also capable of writing.

    What the guy said to me was, “When you use that thing I don’t want to hurt you. And I don’t think that’s fair.”

    Which says everything about the sorts of people I used to think were friends, I think.

  25. Amorpha: I have noticed a lot of people seem to engage in various kinds of force-fitting themselves into experiences that may not really fit them. Although usually when I see it happening in the autistic community it is to a dominant stereotype, or else to the first autistic person they have read about. I used to do that until I learned more about communication.

    For me a lot of it was tied up in what I called my “Translator”‘s routines for coming up with plausible-sounding words. I did it less the more I learned about using words to match thoughts. Although there was a long horrible period where I knew the words I had used didn’t match my thoughts or experiences, but at the same time I had come up with too few combinations of words to actually communicate what those experiences were. And that is where a lot of the drive came from to figure out exactly how to say what was happening to me. A lot of time spent literally tearing my hair out in front of computer screens. And I hadn’t yet learned to trust that after awhile (months to years) I would generate words.

    There were also times I was too insecure to admit differences from stereotypes (whether stereotypes others could perceive or stereotypes I had formed in my head). So I spent a lot of time either going along with them or just staying silent about the parts that didn’t fit. As I remarked at one point, when your life depends on not deviating it becomes a habit. But inside my head I had this running litany that translated as, “What the hell is wrong with you. You really are an idiot just like some people said. You know that isn’t you. You will never find any place where you fit. You will just find all these places where you almost do and spend your life kicking yourself for the crime of being different and hoping nobody seed. Why don’t you just give up and die now. You know being different will kill you one way or another if people find out you aren’t some nice perfect HFA stereotype.” And on and on getting even nastier.

    The funny thing is the more I was able to both acknowledge and communicate who I really was, the more the inside of my head quit sounding like that. I was even more or less able to figure out where I fit in the scheme of things and that I would fit there whether there was anyone like me or not. And then somewhere along the line people who were genuinely like me in many respects started appearing, in ways they never could have appeared when I was mired in camouflage.

    What one friend of mine emphasized a lot was that I didn’t understand I was allowed to be myself. I had gotten locked up the minute my lack of ability to keep up with the life that had been planned for me became apparent. I had spent years with people (both professional and nonprofessional bullies) telling me that they knew who I was better than I did and punishing me for stepping out of line. And I had been taught that my life literally depended on being who people wanted me to be. So that habit didn’t die easily just because I had done my best to get away from everyone who had ever tried to impose their mirages on top of me.

    And when my parents told some of the professionals I would no longer see them, they literally predicted my death if I got away from them. So all this “You will die” crap was a literal internalization of their voices. In one case a particularly nasty shrink had told me that he was going to get into my head and never leave, because I was clearly not capable of running my own head so he would do it for me. (The same one who beat me if I didn’t make eye contact.)

    At one point I spent a period of almost a year with barely any contact with anyone I didn’t trust. I was trying to essentially detox my mind and see what was left when all the “this is who you should be” stuff went away. And while things didn’t happen quite so fast, that at least formed… sort of the base of what would work from then on. Even if the ghosts (as I called the impressions of what people had demanded of me) weren’t gone, I had learned how to talk back to them and to distinguish myself from the crap I’d been fed.

    And after that I became more and more able to communicate in my own words, and less and less susceptible to the “you must die now for disobeying” crap that played over and over in my head. And now if any of it pops up, which is rarer now, I can dismiss it pretty fast. I run my life at this point, and it takes no effort at all to be accurate about who I am. That’s the irony of the people who try really hard to contradict me on that point — being myself takes zero effort, while trying to distort reality takes lots of effort and can never truly happen. So they sit around wasting huge amounts of energy on this and I waste none at all. If I were still playing along, that would take energy, but being who I am takes none. That’s the secret these people never wanted me to learn. They wanted me chasing my own tail forever, and I don’t do that anymore. Which means I have the power of reality behind me, which… isn’t negligible.

  26. Oscilor: I think any generalizations you might make about my views dlbased on one post are based more on the language I use to “gloss” an experience than on my actual viewpoint. You could just as easily say I don’t believe in “types of autism” because I am aware of the history of this and other categories enough to understand how arbitrary they can get. To describe it as a kind of autism is a linguistic convenience not an indicator of how my mind categorizes things. The problem being that I have to choose a set of words to attach to whatever thoughts or experiences I am basing the words on, even though my mode of thinking is fundamentally incompatible with language (and therefore even the best translations are mistranslations that could have gone so many other ways that could seem opposite to the way they went this time).

    And the problem of generalizing about how I relate to people is slightly different — in this post I described exactly one way that I find people who have a lot in common with me. It is not the only way I find people with a lot in common. I also relate very well to people whose minds are otherwise almost nothing like mine but have had similar life experiences. And the people I relate the best to are similar both in the way their mind works and in life experiences. (Anne actually being an example of the closest I have found to that.)

    This post though was about being rejected because the way my mind works is not identical or even all that close to the major autism stereotypes. Not so much because of life experiences. So I wrote about the way my mind works.

    If I were to write in a way that showed completely what my thoughts were on various things I would have to (were it possible) find words that gave a “gloss” of everything I thought. Which would be a lot bigger than this blog, and which would appear contradictory because the glosses would be seemingly at odds with each other. I can understand the confusion but that’s still not an accurate description of my views on things.

  27. OK, regarding your list:

    1) Having never met you in person, I have no idea how easily we’d understand each other. Watching ‘In My Language’ I found you easier than most NTs, but didn’t get the strong recognition that I’ve gotten from a couple of autistics. But that could be the difference between watching someone on a screen and actually being there and interacting with them.

    2-6) None of those apply to me. Once I know how to do something I’m pretty sure it’ll stay with me. As for the comprehension stuff, I have often wished I could turn my comprehension off at times. If it took effort for me to understand speech, I’d be much less hurt by verbal abuse. But my brain automatically signals written or verbal communication as something that must be processed. I can turn off visual processing, but it’s an effort, like crossing my eyes.

    7) I have this to a much lesser degree than you. I loose skills when I’m in a meltdown, or tired, and they don’t follow the expected pattern of breakdown with stress that NTs have, but are just as consistent. I also find that with creative work, I must be in the right mood to do it.

    As for your other list:
    * I have semi-stable abilities, less stable than NTs but to you they’d probably seem very stable.

    * I don’t have to keep relearning things, unless I didn’t truly learn it the first time.

    * I almost never have trouble with verbal comprehension, apart from simple ‘coping with background noise’ issues.

    * I started talking at 11 months, reading at 6 years old, and by now I find it hard to imagine not understanding either of those.

    * My thoughts are on two distinct levels, which don’t influence each other much. There is a mostly verbal but somewhat visual level, that is highly logical and symbolic, and then there is an emotional, somewhat visual level that controls my emotions.

    * I have ‘regressed’, but only in behavioral ways, and that is directly linked to PTSD. I have never lost skills I previously had, except on a temporary basis (eg for a hour) when I’m stressed. As soon as I calm down, they come back.

    * My sensory issues are pretty much all in the form of ‘this hurts, this is too much’ and not basic processing.

    * Even when extremely overloaded, I automatically recognize things, I process speech in a distant sort of way, I just can’t respond. My body doesn’t feel like it belongs to me anymore, but I’m processing things fairly well.

    * My speech followed the usual pattern of development, except for me being advanced for my age.

    * Logical thinking has always felt natural to me, but I do have a second level of processing which is not at all logical. The logical level is usually in control of my actions, but during a meltdown the emotional level takes over instead. I’m still reasoning logically, but that’s not affecting my behavior.

    So, I fit the stereotypes a lot better than you do. But I’ve also had the feeling of being different from other autistic people. And when I found the description of PDA (‘pathological demand avoidance’, though I hate that name) I found the traits that made me stand out from other autistics described in detail. Basically, for me, I’ve always been sensitive to power dynamics, and terrified of other people taking my power away. It literally feels like a sixth sense, like circles of power coming out of people. Someone I trust, my circle will overlap readily with theirs and both are stronger as a result. But if they are antagonistic, their circle damages mine, and I have to harden it, and hold it up against them as a shield to keep them from coming in. I can’t imagine trying to submit to overwhelming force, or believing things that directly contradict my own experience.
    Another thing I’ve grown up with that I’ve heard no one else describe, is the precise way that reality and fantasy blurs for me. It’s not like I literally believe something untrue, but I can make a world in my head where that thing’s true, and it feels almost as real as reality. At the same time, even if I tried to merge it with reality, it would stay separate. Ideas turn into a sort of a semi transparent screen that I can lay over reality to compare them, but I still see the reality underneath.
    And I’ve never felt part of a social group in the way that many people do – even many autistics. I always feel distinct as ‘the only one that’s me’ and it takes effort to twist my mind around to see that person X is reacting the same way as I would in that situation, or something like that. Even if they’re almost exactly like me.

  28. You have been a revelation to me over the past couple of years that I have read your blog. You have helped me to realize that there are many different ways of experiencing the world and that one is not better than another.

    Your description in this post and in the excellent DSQ article sound very much like what zen masters spend years trying to achieve — a different was of perceiving the Universe more directly than through words.

    Thank you for your writing.

  29. Hi Amanda

    I’m not generalising based on one post. I’ve been reading your internet posts since 1998 and had many exchanges with you (as tinted) and tried very hard to try and understand where you’re coming from, and why we differ.

    OK, I accept your point that shared experiences may be just as important, you just weren’t writing about them here. I think we have shared many experiences of institutions and reached similar conclusions about them. That is the level I can relate to you on.

    But what I don’t really understand is some connection based on how minds work. I have a lot of trouble with the very concept of a “mind”. I also have no idea how other minds work,or how I would access them to find out, so I wouldn’t be able to connect to someone on the basis that we had the same mental processes.

    Obviously, from the other comments, many other people do know what you are talking about, but I just don’t “get” this. I seem to have a blank in that area. I just find it very abstract and confusing. But it might also be a cultural or language thing. My background is in biochemistry, not psychology or therapy.

    Another thing that stuck out was when you said “And it wasn’t that we all had identical characteristics, just that within the forest of autism we were all different varieties of oak trees, or else trees closely related to oaks.”

    I don’t believe in any forest of autism or types like oaks or that humans are like different types of trees. To me autism is a social construct, not a biological one.

    To me autism is about not fitting in for a variety of superficially similar reasons, in a time and place where that diagnosis is given, and that’s about all there is to it. There’s no underlying neurology or cognitive outlook. And there wouldn’t be, whatever classification you used.

    It seems to me that you believe that people have intrinsic essences that are neurologically or cognitively based, independently of what they have experienced, not necessarily attached to particular labels (which, as you say, can change), but there all the same, and that there is such a thing as an “essence” of autism. Please correct if if I have got that wrong, because I think it is the fundamental difference between us.

    This is the mainstream view, and gives rise to arguments about who has real autism or severe autism etc as well as attempts to locate autism with brain scans, genetics, cognitive tests etc, which I think is nonsense, because it’s all arbitrary and there’s nothing to find.

    My view is that while we do have intrinsic neurologically based ways of experiencing the world, they don’t map onto any condition like autism/forest of autism and aren’t a basis of connecting to others.

    I think our brains are like kaleidoscopes of a fairly small number of proteins combined in an immense variety of configurations, subject to intricate control switches.

    Neuroscience has a very, very long way to go before we can say anything meaningful about whether brains relate to personalities and minds, let alone constructs like autism. (I admit I could be proved wrong, but I don’t believe I will be).

    Otherwise, I thought you were basically saying that you had found a niche even if it wasn’t within a popular stereotype of people, and i wanted to say that I have now found that too.

  30. Possibly some of what you say is right
    I don’t know. But I do know that you keep bringing up specific examples where you claim to know what I meant based on specific words. And you then state what you think I mean or believe in (I am not even sure I have beliefs to be honest so it is hard to figure out how someone outside me could know these things). And I know what I meant with those words and it is not the thing you stated. I have bern writing another post based on our exchange here and the misunderstandings within it. And that other post quotes something I said last week that details not only that autism is a social construct but exactly some of the twists and turns that say autism is not one thing and cannot be one thing. I also say there is no such thing as autism because the reality is only that people exist and those people get called autistic.

    Following my posts back to 1998 is not a good way of getting at how I see the world today. In 1998 I was overdrugged, brainwashed, and only occasionally capable of putting words to my thoughts as opposed to things other people said. I have spent more than a decade crawling out from under that and finding more and more words to explain how I perceived the world. I was also learning more and more things about the history of autism, about myself, and about the world around me. I have been describing bits of this in my other replies to this post.

    The problem remains that I only have shorthand. If I say something is not my belief then it is not, no matter how many quotes you can come up with that you think point to that belief. What those quotes are, are clumsy attempts at describing one aspect of something. I can’t blame you for misunderstanding but seriously if I say I didn’t mean something then I didn’t. Every set of words I ever use, carry connotations of things I don’t mean. Because the way I think is fundamentally untranslatable and I have to make do with crappy approximationa.

    I don’t think we necessarily agree on everything either. I just think you are drawing inaccurate conclusions from my statements. You often do. It is probably partly the fault of how I engage in language. But in order to avoid creating misunderstandings of that type I would have to stay silent. I don’t know what it is about you and me that means that many of our interactions involve you saying I think things I don’t think and me trying to explain I really don’t think that but never being able to explain satisfactorily why language and I don’t mix in this way. But it is incredibly frustrating to say “I don’t mean this” and hear “oh yes you do because you said such and such”. But I am not capable of writing this post while simultaneously describing the history if the social construction of autism and why I don’t even believe in autism. I tried my best in fact to allude to that several times but apparently that isn’t good enough. I had to use the words I used but it doesn’t mean that I believe in “the forest of autism” or any other such thing just because I used the phrase as a shorthand for “we have all been designated as autistic by professionals and we all seem to have something major in common, unlike some other people who have been designated as autistic by professionals”.

    Aside from that rant (and please next time just take me at my word if I said I didn’t mean something like that even if it doesn’t make sense to you) I am glad you have found a niche. Thanks for explaining that you meant you have trouble understanding these internal features that I and some people I know have in common. That makes much more sense to me now. I am very sorry that I cannot communicate clearly to you but I don’t know how to fix that, we may even have completely incompatible ways of communicating and understanding for all I know. I hope my next post clears things up but I’m not holding my breath considering our long history of utter and total miscommunication.

  31. I have to admit my memory for dates sucks, but what I remember is being around for some months before Asperger’s officially existed. So I wasn’t around for years before or anything. In fact I remember you popping up on the net (or a particular list, anyway) not too long after I did.

    So I didn’t see Noah’s ark get built or Leo Kanner be born or anything.

  32. Pingback: Sorts of people, and conflict « Urocyon's Meanderings

  33. Pingback: Abilities, and burnout « Urocyon's Meanderings

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