About the way autistic people put our skills into different areas.
The following was written to a mailing list about a journal article about autistic twins with seemingly different developmental paths. Ignore any part that seems to be about context, and not the main point of the message. Also I am very sorry that I used such jargony language at some points. I think reading the journal article put my language skills into that mode, and I couldn’t get them out of that mode enough to write in regular English:
In that era, they may still write someone up as having lost the diagnosis just because they learned to talk. Which is sort of normal at the age of four for autistic people. For one subgroup of autistic people, learning to talk at four is as normal as nonautistic people learning to talk at a different age.
To me what this shows is that autism is an adaptation to certain traits. As in, it’s basically a limited set of resources, and different autistic people’s brains allocate resources differently. So two people can have roughly the same original traits, but develop in directions that (at least externally, and sometimes also internally) look extremely different. Due to using resources for different skills in different ways.
It’s one reason I hate the whole idea of progress versus regression. Because what that actually means, is basically. Progress is allocating skills in a way that on the surface appears more normal. Regression is allocating skills in a way that on the surface appears less normal. Both are actually forward growth, they’re just forward growth in different directions depending on where each person allocates those limited cognitive resources.
It’s also why I hate when people say things like “I just don’t see how this adult can compare to my child.” Aside from the ridiculousness of comparing adults to children. You can’t tell based on surface characteristics, whether the inner characteristics of two autistic people are very similar or very different. Well you can tell. But not based on the kind of surface characteristics (like presence of speech or writing skills) that most people use to judge what kind of autistic people is which. Two people can be extremely similar, yet appear very different, just because some surface skill is different between them. And they can be nothing alike, yet people assume they have everything in common, just because they have some surface skill in common.
For instance there are autistic people who have the stereotypical aspie skill set but can’t speak. And people who can speak and are as far from the stereotypical aspie skill set as is possible to be. But people get grouped based on the presence or absence of speech. When speech is really just a surface characteristic that can get changed easily due to things other than basic cognitive makeup.
Also why I hate people making a big deal out of what times in my life I spoke and what times I didn’t. Honestly speech is a surface characteristic. It doesn’t have anything to do with who I am underneath. Nothing about me changed drastically. Something that was very hard just became nearly impossible (except in a few rare circumstances that can’t be repeated on command). But people treat me like there was some huge change, which changed the “type” of autism I had forever. There wasn’t. I’d be the same type of autistic person whether I could speak or not. People like me sometimes can speak, others can’t, it’s not something you can use to determine what someone has in common with me. Or what I at one point in my life have in common with myself at another point in my life.
People who judge on those things strike me as horribly superficial.
But 1979 was during a time period when autism had been changed from its original conception. Originally, most autistic people were people who could speak. Both Kanner and Asperger’s patients could mostly speak. Then at some point things shifted so that lack of speech was considered essential to being autistic. And during the seventies especially, tons of autistic children were undiagnosed as soon as they learned to talk. I’ve known several of them. They’re still autistic.
So it’s possible that even if you find the article, it will say he lost his diagnosis, because of learning speech or learning to interact with people better. But that won’t necessarily mean he actually did. Expect such subtleties to be lost on any person who has their mind set on the idea of recovery, though.
My mom used to tell me that if you smile it will make you happy. That never worked for me. Not even close. But if I flap, it makes me happy. And if I’m happy, I flap. I smile sometimes when I’m happy too, but smiling on purpose never makes me happy, and I quit purposeful smiling ages ago. Flapping on purpose nearly always makes me happy, though.
Loud hands forever!
That autism survey.
1. Are you autistic?
2. Do you know autistic people socially?
Yes. Both in person and online. Lots and lots and lots. More than most people seem to. With varying degrees of closeness from the most intimate (but not sexual) relationship I’ve ever had, to passi g acquaintances, they would number in the hundreds. Although I’m only capable of maintaining a tiny number of active friendships at once. I will forget about my closest friends if I have to be social with more than one or two other people. It’s not a moral failing, it’s just the way I work. I’ve gotten better at it, it used to be only one active friendship at once. But it’s a struggle. My friends have to be able to tolerate me forgetting them by accident. Fortunately many of my friends are the same way.
3. When did you get your diagnosis (if diagnosed)?
Summer 1995. Had my diagnosis changed to other things and back again since then, but that was my first autism diagnosis.
4. What is your genetic gender. Remember, this is optional. You don’t have to answer if you don’t want to.
I don’t know. Nobody knows that for absolutely sure, unless they’ve had their genes tested. But assumed female.
5. What gender identity do you identify as?
I don’t have one.
6. What sexual orientation label, if any, do you apply to yourself?
Lesbian. I know, supposedly doesn’t fit with the lack of gender identity. But I have a hard time with words, and this one gets the idea across the best.
7. Have you ever experienced depression that was not linked directly to autism?
Yes. From age about seven to my mid twenties. I’m 32 now.
8. Have you ever had a meltdown in a public place that was almost entirely or entirely populated by strangers?
Yes. Many times. Even got hauled off by the cops for it before. (Also Ben hauled off merely for existing in public. Yay.)
9. Did you ever attend a school for children with mental conditions (that is, in lieu of going to a more traditional school)?
Yes. From ages end-of-14 to end-of-17, I went to either no school at all, schools that existed within institutions, or else a special ed school for kids with psych and developmental disabilities.
10. Do you parents or grandparents have any mental conditions (not including Alzheimer’s, Parkinson’s or the like unless they were early-onset)?
Both parents, both brothers, at least two or three grandparents if not all of them, and a huge number of other relatives.
11. What is your favourite food?
The vegetarian combination platter, served on injera, at an Ethiopian restaurant called Shebele, in downtown Campbell, California. I’m now on a feeding tube and the restaurant is closed, so I will likely never have it again. But I loved it so much that when I went to community college, I used to save my lunch money all week long just to go there every Friday and order it.
12. What is your favourite season?
13. What are your special interests and when did you pick them up as special interests?
I see special interests as possible to be either conceptual, sensory, or both. I have a wide variety of sensory special interests. Too many to list. Things like tiger’s eye and other stones, for both texture and visual appeal.
I have things that cross over to both. Like cats, and redwoods, both of which I picked up in infancy probably as sensory and social, and that later also turned conceptual as the conceptual parts of my brain developed.
I couldn’t list every special interest I’ve had in my life because they often change every few years. And there aren’t even words for some of the most important ones.
Autism is a conceptual special interest I picked up in young adulthood, late adolescence, as I was discovering what it really meant to be autistic. I maintain a large (100+) collection of books by autistic people, at first because I was lonely and curious about the variety in the autistic experience, later because collecting became a habit. I’m particularly focused on autism as experienced by hundreds of different autistic people I’ve known and read stuff by, rather than autism as described by professionals, which holds much less interest. Because I think what we experience is far more valuable and accurate information.
I’ve worked with autism researchers to help create assistive technology for autistic people, to research topics of importance to autistic people, and to teach them how to uncover potentially unexpected truths about our real experiences and abilities, that defy stereotypes and current theories of autism. I’m considered useful specifically because I have such a large breadth and depth of information about autism as experienced by a wide variety of real autistic people, and I don’t, unlike most researchers, filter out every piece of information from our direct experiences that happens to contradict supposedly common knowledge about autism.
I also have a strong interest in something that doesn’t have a word. Or at least, I don’t like most of the words people usually use for it. Ethics, maybe. But not as a field of academic study. More like trying my hardest to change the world in positive ways. The same kind of ethics Cal Montgomery means when she says, “I read Dave Hingsburger as an ethicist. Not an ivory-tower Ivy League ethicist, mind you, but rather one who worries how to live well amid the blood, the shit, and the chains that surround him. Instead of offering moral axioms from some fake-objective standpoint and then applying them to whitewashed situations, he acknowledges the ways in which the commitments he has made and the messy situations in which he finds himself shape his moral development and his moral outlook.” I’ve always had tendencies in that direction but each year they get more intense. People try to pin me down as doing these things “about autism” but that’s not how I see myself. At all.
I have a strong interest in comprehension and communication that can take place outside of both conventional language and conventional body language. And in ways of perceiving the world that are nonstandard in that way.
Other things too I’m sure. But my arm is starting to hurt from typing.
14. Have you ever collected something, such as stamps, coins, ticket stubs etc?
I had a coin collection and a bottle cap collection as a kid. Now I collect books by autistic people. My collection is huge and includes some rare ones.
15. What is the longest time you have ever spent on the Internet, and what were you doing in that time?
Probably days, doing random stuff.
Sometimes the things that don’t exist hurt us the worst.
First off, I’m a huge fan of not shunning autistic people simply for wanting a cure. And especially for not considering people who want a cure to be somehow lesser in their attempts at advocacy. I’ve worked alongside people who want a cure at all sorts of things and the only one I can’t work with them on is opposition to the idea of a cure. That leaves a zillion things left to work on that have nothing whatsoever to do with a cure. And I wish more people recognized that instead of treating cure or no cure as some kind of test you have to pass in order to be treated as a real person by other autistic people, or in order to be considered a real self-advocate.
But this post isn’t about that at all.
This is a post about why I, personally, think that the issue of a cure does in fact matter. And tnat just because one doesn’t exist doesn’t mean the issue is an imaginary hypothetical thing with no roots in the real world. In fact, for disability in general, as well as autism in particular, the idea of being cured has a powerful hold. Many people in the disability community talk about how the only two ways that many nondisabled people will accept us is if we are cured or dead. We can’t somehow live a good life and stay disabled, it’s not allowed, we have to either be cured, made as close no cured as possible, or be working our asses off all the time in pursuit of a cure. (Is this why some doctors don’t see my life as worth saving with a feeding tube? Because it won’t cure me and I can’t be cured?) So while I consider whether a person wants a cure a matter of personal choice, I also know that the pursuit of a cure in certain contexts can have terrible consequences.
And this is where things stop being theoretical or abstract and start becoming extremely specific, concrete, and personal.
I grew up autistic, but by the time I was a teenager I’d gained a bunch of abilities, and I’d also gained the false appearance of a bunch of abilities that I didn’t really have in the first place. When I was roughly twelve years old, many of those abilities began to fall apart. I didn’t know what to do. I did a lot of things that only make sense if you were inside my head at the time, and I’m not going to go into detail about them or explain them to you because they aren’t really the point here. Suffice to say I began losing both skills I had painstakingly gained, and false appearances of skills, both at once, many of which are so intertwined I will also make no attempt to describe which ones are which because many were a bit of both.
I began having more trouble speaking. I began having more trouble moving. I began overloading faster and shutting down harder. Areas that had always, underneath everything, been my greatest strengths, became amplified as well, but nobody was really looking at or understanding that at the time so this was being seen as a period of loss. I began having more trouble understanding things academically, although I was able to fake it for a while as those skills skidded to a halt. I had more trouble with basic self-care stuff.
This wasn’t a thing where something was there and suddenly it wasn’t there. It was back and forth. One moment I could do something the next I couldn’t the next I could. But the periods when I couldn’t do it happened more often and got longer and longer with time. This happened very slowly. Some of the skills I was losing were also ones that I’d never quite had in the first place. I had tried to be advanced in certain areas without having the underlying foundation required to do them. After a time, when the bottom falls out, all the stuff on top has nothing to stand on. So the bottom fell out and a lot of things fell apart, slowly or quickly.
I had no idea what was happening although I had some very scary thoughts about it. I didn’t even know I was autistic, or what autism meant. I certainly didn’t know that a large percentage of autistic people lose abilities in adolescence and that a smaller percentage of such people had a parkinsonlike progressive movement disorder currently known as autistic catatonia. At the time it started for me, there was maybe one or two case studies out in obscure locations in medical journals. I did see a neurologist but that was cut short and they didn’t know anything about this.
But even more important, nobody had prepared me for an adulthood where I couldn’t do certain things. My only glimpses of such adulthoods involved institutions. Nursing homes, mental institutions, developmental centers, they all blended together in my head, because I knew they were all basically the same thing. And I increasingly believed I was destined for such places forever. Because that was the only option I’d ever seen for adults who couldn’t do what I was increasingly finding myself unable to do. And as with most of the conditions I’ve had over a lifetime, I was the very first person to grasp the implications of losing these skills in a pattern where it didn’t seem they’d ever come back again.
I eventually tried to kill myself and voluntarily checked myself into a mental institution because I thought that’s what people who kill themselves do. My parents didn’t like me being there, they’d seen abuses, and they pulled me out. But I landed in another one, involuntarily, very shortly. I was soon diagnosed with autism, but nobody really explained to me that I was diagnosed or what it meant. I heard the word but because of many things too complicated to explain right now, I heard a lot of other words. I thought it was just one more kind of crazy, and I was certain that I was either crazy or deeply wrong in some way that had no name and couldn’t be explained. So I accepted and went along with whatever I could understand of whatever professionals or laypeople called me and this greatly confused matters. But that’s not the point.
The point is that somewhere during all this, the people around me developed two separate and distinct opinions about my future. One was that I was deteriorating in some horrible way, explained differently by each professional who saw me, and that this would continue indefinitely. I would live in some kind of an institution the rest of my life. The other was that through some treatment or natural process or something, I would be cured by my early twenties, and I would live out my life as slightly weird and eccentric but I would get a job and do everything that a supposedly independent adult is supposed to do.
In other words, I could be cured and live a normal life, or I could remain as I was, and be institutionalized and live a half-life that wasn’t real and wasn’t right and may even, they hinted, be worse than death. Sometimes more than hinted, but that’s another story for another day.
People who thought I could be cured — of whatever they thought I had, be it autism or schizophrenia or some unknown neurological or psychiatric illness with no name — believed they were giving me hope. They saw themselves as being in a constant fight against the people who thought I would remain disabled, even become more severely impaired as time went on. A fight for my life. A fight for hope. A fight for my future. I perceived things quite differently.
I had tried living for the people who referred to themselves as representing hope and a cure. The two being absolutely linked, there was no question in that. There was no hope where there was no cure. I would try their treatments, whatever they were. For a short time I would work my ass off to function the way they wanted me to function. For a short time I would partially succeed, through burning through all sorts of resources that had better uses. Then I would run out of such resources. The real me would show through. Unable to do things. Shutting down even further than normal because I’d used all my energy to appear as if I could do things I couldn’t. And then the treatment would have failed and I would feel incredibly guilty. But I threw myself into every role they gave me and then tried hard to be cured of whatever they thought I had, because I didn’t know what else to do.
Deep down, though, I knew that what they were offering me is not hope. Things that are absolutely impossible are not hope. I knew without a doubt in my mind that I couldn’t do what they wanted me to. Because they wanted progress at a rate that a nondisabled person would progress in their skills. I couldn’t do that. I could put all the effort in the world into keeping up, and at best I’d just fall behind a little slower. Over time this became obvious to me before it became obvious to anyone else.
And it became obvious to me that both groups of people, both the ones supposedly representing hope and the ones supposedly representing despair, were telling me the exact same damn thing. If you are not cured, your life is hopeless. If you remain who you are, your life is hopeless. If you are not cured, and remain who you are, terrible things will happen to you. That message was just as loud and clear in the people who claimed to represent hope, as in the people who didn’t. And it was just as destructive. Their hope for a cure was actually telling me that I couldn’t live in any possible way I wanted to live, unless I did something I had become aware was just as impossible as waving my hands and transporting myself to New York City.
This is where people have called me stupid, and where I’ve hated myself. People even in recent years, when I tell these stories, have told me I should have known better. Ought to have known better. Somehow should have been able to envision a scenario that had never, so far, been part of my life yet. I had never seen anyone like me living a life I could see as okay, and now some people would rather blame or mock me for that cognitive limitation than face up to the fact that some forms of “hope for a cure” have dire consequences for the people subjected to them. I’m far from the only person faced with this situation who could only imagine the two outcomes presented to me. The one outcome, really, because I couldn’t fool myself into believing I could be cured. And even the cure option told me my non-cured self would meet some dire fate.
So I became even more suicidal than I had ever been in my life. Suicide is something people often choose when we see no other way out of a horrible situation. I was being promised a whole lifetime of horrible situations with no escape, just for being who I was. I knew now that who I was, would never be cured. I still believed, not understanding autism or some of the other diagnoses I’d been given, that what I had was mysterious and terrible. Because it had no name, for all I knew I was the only person who had it. And that made it some dark, terrible secret, personal to me, that even I couldn’t fathom or understand. Worse than anything even the pessimistic people talked about. Worse than anything that existed. Something with no name that didn’t exist except somewhere in the depths of my body and brain. Something even the doctors couldn’t understand. This was even after I was diagnosed, for the word autism meant next to nothing to me until later, and the term autistic catatonia hadn’t even been invented yet, and all this talk of developmental disorders and pervasive developmental disorders was all just garbled words to me.
So I became suicidal. Very suicidal. I tried to kill myself in both ordinary ways and quite weird ways. I no longer made any effort to appear to get better, at least until I was beaten into it again. Literally.
And autistic adults had to teach me, as I was first reaching adulthood, who I was, what was really happening (they sent the newest papers on autistic catatonia to my shrink, who diagnosed me instantly, having seen it all those years), and the sort of life I could lead without being able to work or take care of myself very well. But it took years for the feelings to lift that had been caused by misguided attempts to cure me. Feelings that I wasn’t worth anything to the world as I really was, that my life was going to be worth shit. That I was uniquely and terribly defective in ways that had no name. None of that went away just because I’d discovered I was autistic, in addition to a wide range of other things going on with me. It did a lot of damage and left scars that still haven’t healed.
And that’s just the idea of a cure. You don’t need an actual cure for a cure to do harm to people. It’s not just a hypothetical thing. I spent my adolescence certain I was better off dead because of the way people talked about cure around me. And the way people talked about cure around me is the standard way people think and talk about cure around autistic people and many other kinds of disabled people. I had no idea that I could grow up and live a life that I determined, as much as anyone can determine their own life. I had no idea I could have my own apartment unless I was cured. I had no idea I could be a happy, severely disabled adult who never recovered from that mysterious progressive condition with no name. I had no idea I could be okay with the uncertainty of not always knowing what was going on with my body. None of these things were given to me as possibilities because the only good possibilities came out of cure.
So want a cure for yourself, don’t want one for yourself, be indifferent to a cure for yourself, I couldn’t care less which one you choose and it won’t affect how I think of you. But don’t tell me that the whole idea of cure doesn’t matter because a cure doesn’t exist. Lots of things that don’t exist have a huge effect on people. People are constantly living their entire lives by stories in their heads that have no direct bearing on reality at all. And the story of a cure being the only way to live a good life, is a powerful one, its a story worth fighting whether you want a cure for yourself or not. Because it’s a story that kills people from within and without both. It’s easy to say that things that don’t exist can’t hurt you, but it’s not true, sometimes the things that don’t exist hurt us the worst. And I’m still recovering from the damage of that damn imaginary hope for an imaginary cure.
I was telling my friend about the black widow spiders in my bathtub. The ones that made me so reluctant to go in there when this same friend had me set up a speaker phone in the bathroom and prompted me through the vague motions of a bath or shower.
She said “You never told me about that back then.”
I said “You do realize that I was discovering true, consistent communication for the first time back then?” Or more specifically, the first time such skills stuck.
And she said “Yeah it seems like these days you’re always telling me far more detail about things that happened, stuff you never told me before.”
I can’t describe what it was like. I knew I was able to say some things. But other things were impossible to say. And I’m not talking about sophisticated analysis of my emotional situation. I mean “there were black widows in the bathtub”.
I know I used to scare her with phone calls like “So… my kitchen is on fire, what do I do?” But I think she gets scared in retrospect about dangers I wasn’t telling her about. Not to be secretive but because I couldn’t.
And my life at the time needed describing for many reasons. One was that nobody I knew online understood why I was so hell-bent on obtaining services. Only the one who walked me through things over the phone every day had a good idea why, and even she didn’t know how bad things were. But when agencies sent questionnaires about my “typical day”, I couldn’t fill out concrete obvious details. Only my mentor seemed to even understand the communication issues. She wrote something like, “Amanda’s communication skills are deceptive. She will talk about an apparently irrelevant subject at great length while failing to mention she hasn’t eaten in days.” And that was the problem. I couldn’t say what I wanted to communicate, I could only say other stuff.
And I was so frustrated online. If you think autistic people’s parents can be bad now. Back then they couldn’t even conceive of someone like me. I’ve spent all those years trying to carve out a space for us. And now they’ve at least heard of people who can write online but not take care of themselves. Before, they didn’t even exactly reject the idea, it was simply unthinkable.
I badly wanted to tell them many of the details of my life. I could hold them in my head. But it took me at least five years to even scratch the surface with words. And to be told all that time that I was clearly wonderful at communication because I could discuss other topics online, was more than I could stand. There was always more I couldn’t say than I could.
And they tried to tell me stupid shit like “that just proves you’re smart and the stuff you can’t communicate is the stuff all smart people can’t communicate”. No. No. No. I’m talking about black widows in my bathtub, urine on my floor, getting stuck all the time, concrete things that practically everyone can say. I couldn’t. Not because of emotional reasons but because I had, and have, a striking communication deficit. It’s just that you have to know where to look. You have to not fill in the blanks and assume if I can say this then I can say that. And that it usually takes between five and fifteen years of brain-bending work to be able to say something new.
I just got my copy of Loud Hands in the mail. Thanks!!!
My only problem so far is the way the letters work. They’re this combination of being the tiniest print I’ve ever seen in a book, and really wide columns, which makes it hard for me to read it. I actually sometimes do better with small print, but it has to be in narrow columns, so it just doesn’t work.
Other than that though so far it’s great.
Critic of the Dawn
II. As I move through my life — a disabled person — two companions haunt me. They are imaginary, but in my dealings with other people, they are forceful. Sometimes other people cannot seem to sense me behind those phantoms. Sometimes I am forced into their masks, and falling out of character has consequences.
One I think of as an uncle. A descendant of Carrie Buck, of the Jukes and the Kallikaks, a cousin to the Rain Man and the wild children of the forests. You’ve seen him rocking in the corner, headbanging. He cannot speak and, people assume, has nothing to say. Sometimes he is a cute, incomprehensible child; sometimes a terrifying, incomprehensible adult. He is usually uncomprehending but sometimes manipulative; usually repellent but sometimes seductive. Violence swirls around him: sometimes he is a target, sometimes a perpetrator, sometimes both. He is an enigma, interpreted by others: he cannot define himself. He embodies the stereotypes, the paradigms of cognitive impairment, of my own particular set of labels. He’s no different from me — but he is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no resemblance. Bruce, I call him in intimate moments, after a caricature I once saw on television.
The other I think of as a sister. A shadow twin. The daughter my parents wanted in my place, pretended they had. The sister my flesh-and-blood sister wished for. Me, but with impairment denied, defused, removed. Me, but with grace, stamina, social skills. She speaks for herself — then again, she doesn’t have to. She’s no different from me — but she is. Get me in the right situation, and we look exactly alike. Get me in the right situation, and you can see no hint of resemblance. Mary, I call her, after the aunt whose other name I was given.
Yes autistic people of this sort are real.
This is really hard to write. As in, this entire kind of post is slightly past my comfort zone intellectually right now. So this is taking a good deal of effort. And that’s why I haven’t gotten it written earlier.
Autistic people exist who get major, basic assumptions about reality wrong. Autistic people exist who really do have fantasy worlds. Not only that, but these things are common, they can be closely related to the traits that make us autistic, and they can be wholly unrelated to psychosis.
I wouldn’t have thought this needed to be said. But I’ve come across posts recently that present the idea of such autistic people as “myths” rather than the relatively common people we are. Especially common is the part where we get seemingly basic things about reality completely wrong — especially among those of us with any kind of delay in using or understanding language. Because kids learn about the world partly by asking questions and listening to our parents, and anyone who has that process interrupted in any way is going to lack that particular advantage.
Plus, anything that affects how we learn about the world around us will likely leave odd gaps of knowledge in areas where everyone else “just knows” something. Sometimes that can mean we lack common wrong assumptions about the world, but other times it means we lack common right assumptions about the world.
I know an autistic woman who was well into adulthood before she learned that her reflection was an optical phenomenon and not a person.
I am still in the process of learning that dreams aren’t real, that I’m located in my body, and that my subjective impressions of the world aren’t fact. (So, I don’t routinely disappear and neither does the world around me, they just seem like thy do. For instance.)
I still see “inanimate” things as alive, and not in an anthropomorphic way. I don’t see that as unreal, but many people do.
My relationship to time is really complicated. For awhile, I really believed that I could communicate back and forth with myself in the past and future because my understanding of time was really hazy. I now see that as inaccurate, although I still view time differently from the average person.
And these things represent only a few of many gaps between my version of reality and the ones most people in my surrounding cultures seem to have.
Oh and also I was really late to go through certain developmental phases involving differentiating reality and fantasy. Really late. As far as I can tell, early on, I simply didn’t have the cognitive skills to go through phases most people go through as toddlers. I went through such things later, in ways that looked much the same as how young children go through it, except mixed with having other capacities toddlers don’t have, in ways that looked really weird.
At one point I thought that if I believed hard enough in such things, they would come true. I think I had heard this many times, and I lacked the background and skills to be able to evaluate this as false.
I had read a lot of science fiction and fantasy, as well as fairy tales, and I had no reason to see many of the concepts in them as false when people around me presented similar concepts as true. And even when I saw some things as impossible, enough people said otherwise that I had reason to wonder if I was missing something.
And equating these things with psychosis? Please don’t. Treatments for psychosis don’t work on simply being mistaken or imaginative (which is what most of this is), and can actually make the problem much worse for autistic people in these positions.
And at any rate — I’ve met a lot of other autistic people with very similar experiences, for very similar reasons. And I’ve read about even more. And known parents whose kids had things like this going on. This is not rare and it’s not separate from being autistic. Just because some autistic people have never been mistaken about things like this, doesn’t mean that these things are unconnected to autism for those of us who experience them. And I’m sick of dealing with autistic people who want to make it sound like the rest of us don’t exist, just so they can avoid dealing with things that make them uncomfortable. None of these things are necessary to be autistic, but common in autistic people, absolutely.
About words and people with language impairments.
I know this is a wider trend, but when I see it happening in the autistic community it makes me go WTF.
So there’s a lot of people who go one step beyond analyzing the language we use. Analyzing the language we use is fine. I have no problem with it. Sometimes it’s important.
People come up with a wide variety of terms that Should Never Be Used.
And then they attempt to pressure everyone else to stop using them. And I don’t mean slurs, although sometimes these words will be misidentified as slurs. (Which… usually causes people to lose track of what a real slur is and does to people.) I just mean words that have been identified as wrong because of associations, connotations, inaccuracy, etc.
And then they try to pressure other people into not using them. Or they refuse to listen to anything someone says — if they used one of these words then they couldn’t possibly understand anything or have anything useful to say. Or tell people how, through a long and obscure chain of events, using these words might kill people, and thus are as bad or almost as bad as slurs directly attached to killing people. Or… otherwise enforce rules that these words are Bad and shouldn’t ever be used.
Meanwhile they come up with other words. New words entirely. Or obscure old words. Or new or obscure meanings to old words.
And they use these words throughout everything they write. Sometimes they are substitutes for old Bad words, in which case they’ll pressure others to use them. Other times they’ll just sprinkle them throughout their writing to the point where you pretty much have to understand these words to have a clue what they’re talking about. Even if there are plenty of simpler words.
And I just wonder.
Has anyone considered what that does to those many, many autistic people who have serious enough language problems that we can’t handle this?
People who can’t consistently filter through their written and spoken language to remove words. Including some people who can’t even remove “retarded” (the clinical term, not the insult or slur). Let alone “stupid” or person-first language.
People who can filter words out, wholly or partially, but can’t replace them with anything.
And we hear “It’s so easy to come up with other words.” No. It isn’t. It’s damn near impossible.
And “Here’s a list!” A list that I can’t memorize. A list that doesn’t mean the same thing at all. A list that has words in it I can’t understand or use.
And “People who say they can’t stop using these words, or can’t replace them, are lazy.” Thanks a fucking lot.
And statements that we are just making excuses to be total assholes and deserve nobody’s respect or understanding.
It took me years to replace mental retardation and MR with intellectual disability and ID. And I did that for much more reason than I will ever have to replace these scores of other words. I have better uses for such time and effort. Time and effort that may never be rewarded, mind you. It takes so much focus to use words at all.
And on to those obscure or invented words, and obscure or invented meanings for old words.
I will never tell everyone to quit using them. Because some people have to keep using them for the same reason some of us have to keep using stupid. And because sometimes there is no other word within reach but the new one for a concept someone is trying to describe. I’m sure I use some words like this myself.
But people should at least understand what this does to a lot of us.
My receptive language is far worse than expressive. It takes conscious effort to understand anything. Real, serious effort. So at best, many of these words are blank spaces. Which means when they are everywhere, or essential for understanding what you’re saying, I can’t understand you.
But it doesn’t stop there.
These words usually cause pain. Searing, electrical pain. At best. At worst, they cause silent explosions inside my head. It is horrible. Often, it is intolerable. And if it happens too much I will have to stop reading your writing.
Not that everyone can or should be able to read everyone’s writing. But it’s very unpleasant. To put it mildly. Too many of those explosions and I can no longer read at all. Or function. Sometimes they give me migraines that make everything impossible.
Which brings me to my other point. About replacing Bad words with these new or obscure words.
Not gonna happen for a lot of us.
I will never be able to replace transphobia with cissexism even if I wanted to. Never. Not in a million years. Even if they meant the same thing. Because cissexism causes a tiny explosion in my brain. Can’t do it. Will never do it.
I know, because every time I bring this up I am told so, that “language is important” and I can probably recite all the ways from memory. But in my view, people are important. And the way a lot of people treat this stuff is putting perfect language above people who have trouble with language. (Which also includes people for whom this is a foreign language.) Which is one of many reasons I can’t get behind this trend.
And why I am baffled that some people in the autistic community try to enforce perfect language on people with serious language impairments, while claiming that by doing this they are respecting those very same people.
Again. I don’t care that people analyze language. I don’t always see it as the most useful activity, but I don’t mind that it exists. I just care when people try to make other people use the same kind of language they have decided is proper. Or insist that those who can’t conform are doing something awful.
YOU CAN’T DIAGNOSE YOURSELF WITH AUTISM.
STOP. IF YOU THINK YOU’RE AUTISTIC- YOU’RE NOT. WHY THE HELL WOULD YOU WANT TO MAKE SUCH A DEBILITATING DISORDER PART OF YOUR IDENTITY?
Do you know how hard it is to live with autism? Not just to have it, but even to live with or know somebody affected by it? It’s the most disheartening thing in the world; it’s absolutely horrible. There is nothing wrong with having autism; it’s areal developmental disorder. There is, however, something wrong with wanting to be autistic. Do you understand how hard life is for people with autism? The lengths they have to go to in order to do things you and I take for granted? The pain they feel? The pain their families feel; the anger? Why would you EVER want something like that? Why? It makes no sense.
Um, yeah. That is what charities like Autism $peaks want you to think autism is. Now go read everything Amy Sequenzia ever wrote, because she’s pretty much the person you think autism looks like, except for the part where she’s happy and doesn’t consider herself a tragedy. Oh, and read about all the crud that’s wrong with the profession right now (yes, people really have been told that they can not possibly be autistic because they do not have a penis, and yes, IB1 is the only thing from IB that most people will actually count.) Now understand that autism is a huge spectrum ranging from in-your-face disability to people you think are “just weird” and everything in between. Finally, realize that yes, self-diagnosis can be valid sometimes. Because autistic is a descriptor for a way that the brain is wired, not for how tragic and burdensome a life is.
And yes, I am professionally diagnosed. Shut up.
Ok, OP, it’s like this:
I’m tired of sucking at things that most people can do easily and not knowing why. I’m tired of trying to fake normal. I want to start accepting my limitations and working with them rather than against them. I want to lead a good life, with the brain mind and body I actually have.
Because, you see? These things you take for granted? Aren’t actually easy for me. And trying to ignore that has caused serious problems for me.
You know what you don’t understand? What it’s like to be told constantly, that real people aren’t like you. When the phrase you hear most often is “people don’t x!”. When every description of a person you ever see differs from you in fundamental ways. And when you’re confused and people tell you horrible things about yourself, and you believe they are true.
And then you meet some people like you, and you find out that there is a word for how you are, and that you’re not alone, and that there are ways of coping that no one around you ever understood or explained before. And you find out that it’s possible to have a good life as a self-respecting autistic person.
And then people come and tell you you’re bad and wrong for using the word that describes how you function, because if it applied, you’d be miserable and broken and not able to understand anything, and tell you that autism is the worst thing in the world and that you’re appropriating people’s pain and don’t understand that it’s a serious disability. And that real autistic people live in constant pain, and people who know real autistic people are angry and miserable all the time.
And actually, I’ve lived with and been close to other autistic people (who were professionally diagnosed), and it made my life dramatically better. It wasn’t the most disheartening thing in the world. It was one of the most liberating and affirming things I’ve ever experienced. Because I was with people who understood, and — because they were good people and I liked them very much.
It’s actually possible to love and value autistic people. It’s possible to be close to an autistic person without being miserable and angry all the time. People who claim otherwise are dangerous.
Also the OP does one thing that I find really dishonest and manipulative. They refer to deciding you’re autistic as “wanting to have autism” rather than “realizing you have autism”. This biases readers because the idea of wanting to be disabled is highly stigmatized.
Never mind that many people who were diagnosed by doctors want to be autistic, or whatever other condition they have. That itself is fairly stigmatized too. But not as stigmatized as someone presumed nonautistic (because we all know that every time an autistic person is born, no matter their circumstances, a highly qualified doctor magically appears three years later to diagnose them, therefore all undiagnosed autistic people aren’t autistic until and unless a doctor notices, which won’t of course happen, because they’re not autistic) who “wants to be autistic”. So if you want to discredit self-diagnosed people, say they want to be autistic, and you can evoke all these stereotypes in people’s heads. Still manipulative as hell.
Oh and guess what? I was diagnosed by at least three different doctors. I was never self-diagnosed. Many people who just see me without any further context have a habit of assuming that nobody exists in my head. Some people who see me even with further context, like me typing coherently and quickly, still refuse to believe I’m typing and think my computer is somehow playing an elaborate trick on them when it speaks my responses. I was in the hospital a few years ago and saw one person who worked there showing another my chart and saying to disregard my chronological age because I had the mind of an infant. I need help with just about everything throughout the day, and I can’t work. There are times that I really can’t think very complex thoughts and mostly experience patterns of sensory input, and times when even that shuts off and I’m still aware of something, but I don’t know what.
And I not only don’t mind being autistic. (Not that there aren’t bad parts. I just don’t want to become nonautistic.) Not only am I happy with my life, and would be even if I didn’t have what I have now in terms of abilities. But I don’t mind that people self-diagnose. It doesn’t harm me in the slightest. So please stop using the same stereotypes people are always using on me, to hurt people who discover they’re autistic before a doctor discovers it.
While I don’t agree with the direction of his research (putting it mildly), I completely agree with Simon Baron-Cohen when he says that the vast majority of autistic people who self-diagnose are correct. And frankly even if they’re not, they’re hurting less people than you hurt when you try to spread rumors discrediting them.
Also, many self-diagnosed autistic people do not even slightly fit the HFA stereotype. One woman I know who self diagnosed had been misdiagnosed with a severe intellectual disability throughout her childhood. When very young she often lacked conscious thought at all. The only way she got an education was through a mixup when she was paralyzed head to toe from a medication reaction in mid childhood. The hospital sent in a tutor who of course didn’t see any of her odd behavior because she couldn’t move, and proceeded to teach her at her actual age level by reading out loud to her. She had already taught herself how to read (hyperlexia is common for autistic people), but nobody knew and thought she was just playing with the paper.
In adolescence she surprised everyone by learning to write. Later on she learned to speak but not very well. She continued to have severe perceptual and cognitive issues associated with autism, despite her talents in a few areas. Her written grammar is still not typical. She was raped in an institution and gave birth to a girl with severe Rett’s. She kept her (they sent CPS out a lot but her daughter was always well cared for so they couldn’t do anything to them, to their frustration) and raised her. She had a lot of support from her family.
She later figured out she was autistic. I believe she was eventually officially diagnosed. She had to deal with some stupid diagnostician thinking she must have Asperger’s because some of them think if you’re an undiagnosed adult and have any speech then you have AS. Even though severe self care delays, childhood diagnosis of severe intellectual disability, and a speech delay until she was well into her teens would all each individually make an AS diagnosis impossible. She was also tested for the Rett’s gene and tested positive for the MECP2 mutation, explaining where her daughter got it. So she also probably had a milder version of Rett’s.
I’ve met both her and her daughter. They are both wonderful people. And her autism is extremely obvious in person, just as it is on the Internet from her unusual grammar and trouble understanding certain things. It’s also obvious to me because our body language is mutually compatible enough that we never had to speak/type in person to convey basic meaning. (She greeted me by walking around my table while spinning/dancing around the room without ever looking directly at me, I acknowledged her without even trying because the pattern of my rocking changed slightly when I noticed her. Nonautistic people surrounding us picked up none of it because they tend not to see this kind of thing as body language at all.)
So not all self-diagnosed people even meet your stereotype by a long shot. And I know that at times, and possibly all the time (I have never asked, not important to me) she very much does not want autism. So there goes that stereotype as well.
And there are tons of people out there just like her. Who have very visible forms of autism but one way or another weren’t diagnosed with it as children. And when you are past childhood, looking autistic is more likely to get you diagnosed as mentally ill than autistic. Some of them were diagnosed with something like intellectual disability or childhood schizophrenia as children, some through various situations too many possibilities to describe, weren’t diagnosed with anything. Some even self diagnose as adults only to find out they were diagnosed at a very young age and their parents actively hid it from them. And some (as is more common than you’d think) looked far less obvious as children than as adults and may even have slowly or quickly lost skills they had in childhood. (Which can get misdiagnosed as all kinds of things, but is more common than most people are aware of.)
So basically, just about everything believed by those who oppose self diagnosis is as completely wrong as you could possibly get.