Since someone requested it:

I tried to caption it, but I’m not sure how much information I managed to convey.

Since various people have been asking, what’s been going on is:

1. Visitor was here for 8 days, nearly all waking hours spent with her
2. Too many physical therapy appointments (and plenty of associated pain afterwards as far as I can tell)
3. Too many urgent-care appointments, both for me and a neighbor (for different reasons)
4. Too many meetings
5. Still trying to work on the cat video
6. Trying to plug very slowly through at least a bare minimum of online obligations as well as anything random I come across online
7. Offline volunteer work
8. Recovering from #1-7

This hasn’t left a lot of time for blogging, answering emails, etc, although I’ve been doing some of these things erratically. I lost my wireless card so any emails to my MIT account probably aren’t getting through either. If anyone’s sent anything to that account that’s urgent, please send it to my regular email account and I’ll attempt to get to it (anyone who has the MIT address also has the other as far as I know).

I was just reminded of one pretty solid indicator that the guy who works for me in the afternoon actually sees me as a real person.

Whenever he leaves, he says really casually, “See you guys later.” Always has, since his first day here. Just did it again about five minutes ago.

He means me, the dog, and the cat. He addresses it to all of us. He realizes that when he’s in my apartment, there’s four sentient creatures in the room including himself.

There was a staff person I knew in California who was the same way. She talked to me and to my cat, neither of us with baby talk, as if we were actual people. She was training to be a speech pathologist, and I think she’ll make a good one.

(I’m remembering in particular how Fey and I used to watch her while she did stuff, and she talked to both of us when we did that, “Why are you two staring at me!?!”)

And I’ve found that staff who instinctively see the dog and cat as worth talking to, just casually, and acknowledging them like that, tend to see me as a person, and an equal, as well. Not a hard and fast rule or anything, but so far I haven’t met many exceptions.

I’ve been tagged by Steve D at One Dad’s Opinion.

The rules:
1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

I’m doing this one photographically. The photographs that have larger versions can be clicked on to see them. I’ll do photographs and then the stories behind them. Not sure how random they are, they’re all stuff I found in different areas of the house though.

1) Clock

These are the innards of a particular clock. My parents apparently found it in the attic somewhere and have no clue where it came from. It doesn’t work too well now, but throughout much of my childhood it did. My parents said that its gong was one of the first sounds I responded greatly to, and it was with apparent recognition and great interest (the apparent recognition led to speculation I’d heard it in the womb already, no clue if that’s possible or not). I can remember in older childhood running to watch the workings behind it whenever I heard the first few clicks winding up for it to gong.

2) Beam tree

This is called a beam tree, and we had one in the house because my dad worked at SLAC. It’s another thing I remember staring at a lot. In this case, there was a base a friend of his made, that had a light in it with a rotating colored filter. This meant it would light up in all different colors. I didn’t even realize how rare they used to be until I got older, nor did I understand how they’re made. Basically, they’re made by sticking a slab of plastic at the end of a particle accelerator and bombarding it with electrons. Then a person touches it with a piece of metal in a certain spot, and all the electrons escape. The tree-like shape is the escape path of the electrons.

You can see one being made here:

3) Books

That field guide to birds is the first book I ever read, and apparently memorized a good deal of it. I was quite young at the time. I particularly remember my favorite word ORIOLE (which is black and purple), and because the word was black and purple (due to the O and R), confusing it with the black and purple coloring on the next page, which appears now to be attached to a grackle.

These days, though, my favorite book is a children’s book, Momo by Michael Ende, and my preferred reading is children’s fiction.

4) Scrapbook

This is from a scrapbook my parents made from when I was a kid. For reference, I did not at the time understand the words concepts of humidity, relative anything, water vapor, or percentages. I was copying this almost word for word out of a book.

From the same scrapbook, astronomy stuff that I apparently gave to my parents given it has their name on it. I don’t remember if that was from a book or not. Astronomy was a Big Thing of mine for awhile, I devoured the entire section at the library. Just random kid geekery I guess.

5) Message bracelet

Speaking of which… I don’t know about you, but I don’t know a whole lot of little neurotypical girls who, when asked to make a message bracelet, would come out with something like this. My brothers taught me to use a VIC-20 to make patterns on the screen pretty early, things like this are the result.

6) Cats

I used to collect these, this is only one of the remnants of that collection (I gave most of it away before moving). I used to have an entire shelf full of cats in ceramic, wood, rubber, and any other form I could find them in. Cats, as you can gather, have been another Big Thing for me. When I was in sixth grade I wrote my autobiography as roughly, “We had cats named Tiger and Mouse and Calico. Then Mouse had kittens twice and there were Smokey and Tangerine, but Tangerine’s name got changed to Frank. They all ran away when we moved but Smokey and Frank came back. Then a black cat showed up in our woodpile and got named Jenny before we figured out he was a boy.” And so forth, going on at great length about the fur length, coloring, and appearance of all the cats.

7) Tape measure

I found this lying on the road in Boulder Creek, California, which is where I lived when I first moved away from my parents. It had clearly been beat up and run over a bunch of times. It’s become one of those comfortable objects that I take with me places for familiarity purposes — it feels good in my hand. And it also has ties to another kind of object I used to use that way. When I was in school, I carried a lot of bags around with me (people frequently made the pun with my last name because of this). One of the things I did was I’d pick up rulers and put them in the bag. I unfortunately wasn’t grasping the idea that it wasn’t nice to nab other people’s rulers. I amassed quite a collection. Oddly enough, I never got in trouble for it, but I did get a bunch of kids chanting “Thief! Thief! Thief!” when they saw how many of them I had. I suppose they had a point. (Don’t worry, I’ve since grasped the idea of property.)

8) Star

This is something my friend Natalia sent me, along with a wooden cat. The wooden cat fits perfectly in my hands and has gotten so familiar so fast (and used as another of those familiarity objects) that people often ask me if I’ve had it for ages, but really these things were only sent last year. The ornament is really cool because it’s got little pieces of colored plastic in the middle that look neat when held close to your eyes, and can also be fiddled with and spun in circles. Natalia is particularly talented at picking out things that really suit me in some way.

So I have to tag a bunch of people. Hmm. I hope I haven’t overlapped with anyone’s tagging, and I’m not even sure all these people participate in things like this, but here goes:

I guess I tag Natalia (same Natalia) at My Spanglish Life (because she’s random by nature anyway), Dave Hingsburger at Chewing the Fat (not sure if he does memes or not, but worth a shot), Moggy at Moggy Mania, Rark at rarkrarkrark, Danni at Danni’s Blog, Neral at kirayoshi, Chris at Simple Gifts, and Danechi at And Stimming with Rainbows at Every Design.

I just got this in the mail today:

We have received the results from your lab work. The tests show significant allergy to cat and dog. You are also allergic to grass and tree pollens.

In order for your asthma symptoms to improve it is very important for you to have your animals placed in someone else’s care.

Okay, I’m also allergic to grass and tree pollens. There’s a tree outside my window, and a lawn when there’s no snow, should the landlord cut down the tree and poison the grass?

I have lived with this cat my entire adult life. She is part of my family. I love her. If I were allergic to my brother, would they have told my parents to have my brother adopted out to another family? This is a cat who, when I left her at home but in the care of a staff person she really likes, for two weeks, when I was out of town… she meowed continuously all day until she lost her voice and then kept trying to meow. We’ve lived together for seven years now. Both of us would be devastated if we were separated for too long.

I have not lived with the dog as long, but she is part of the family too now. She was neglected earlier in her life, she was found wandering around. She seemed not to believe she was going to stay with me, it took her a long time to settle in. After she had to live somewhere else while I was relocated because of concrete dust in my apartment, it took a long time to convince her again that she was living here for good. There is, again, no way that I would put her through another relocation and another set of “Is this person really going to stay with me forever?” worries on her part.

So, no, he’s going to have to find another solution, like allergy shots or something, because I’m not going to “place my animals in someone else’s care” as if they’re just disposable objects and not people.

The other day, I picked up the following appearance for my avatar on Second Life:

It’s actually a wildcat avatar since it had more options for moving around and stuff than the cat avatar, but close enough. I’ve been mostly into realistic avatars, and still didn’t want to look like the norm for avatars on Second Life (which is to say, for females anyway, tall, skinny, and conventionally sexy), so I gave this one roughly the same build I have. Then Muskie gave me a cat tree so I sat on it.

For those who haven’t met me, I speak what Anne Bevington calls fluent cat. I’ve always been around cats, they’ve always made a fair bit of sense to me, I’m comfortable with them. When I was a kid I spent quite a long time “being a cat,” including walking around on the back fence keeping neighbor cats out of our territory. (I don’t want to know what they thought of the weird kid doing cat postures on top of the back fence.) I even did somewhat more, uh, embarrassing kinds of territory-marking. I could (and can still) make just about any noise cats can make, and most movements. My main regret was that I didn’t have a tail and swivel-ears.

So I always said if I was going to go for an unrealistic avatar on Second Life, it’d probably be a cat. So there’s my cat avatar. The only thing that bugs me is that it’s an anthropomorphic cat. I don’t totally understand the draw of anthropomorphic-shaped animals (besides humans and such). Aside from the fact that it’s easier to put into Second Life’s avatar structure. It’d be nice to have one that actually moves like a cat instead of like a human in a cat-shaped outfit.

I made the following video after observing a lot of things. Someone on YouTube called me a mong, which is a British term for retard. I saw other people on there being called retards, and I found some of people’s responses to being called that, almost worse than the people calling them that. Sort of like straight people who go out of their way to prove they’re not gay to people who call them a fag, instead of grasping that the problem is the bigotry, not whether they specifically are gay or not. Lots of people say “I’m not retarded” when someone calls them a retard. That seems to me to be missing the point in a big way. (So does “reassuring” me that I “don’t look retarded”.)

I don’t endorse using the word retarded or retard casually, quite the opposite. But when someone starts calling me a retard, or a mong, or any of those other words, my immediate response is not to distance myself from the group of people they’re insulting (that itself is an insult to that group of people), but to say, yeah and proud of it, or yeah what’s wrong with that? People have been telling me I “look retarded” since I was a kid, I might as well respond in some way they don’t expect.

Other people, they express astonishment at my intelligence, and then they act like I’m a “smart” person “trapped in a retarded-looking body”. That’s not how I experience my body. At all. Nor is it really how I experience my mind. People ask me how I feel about that. Often. Or they ask me how I feel about being “lumped in with retarded people” in special ed. As if that’s the problem with segregation, is actually (gasp) having to spend time around other defectives like me. No. Wrong move. Wrong idea.

So, I made a video, about reclaiming insulting language, about why on earth it’s considered such an insult to be called slow, and about why I happen to consider most people’s well-meaning back-handed compliments (”you don’t look retarded,” “you’re so smart for how you look,” etc) more insulting than being straight-out called a retard. And about why I think, when we (anyone) are referred to as retards, the proper response is not to distance ourselves as fast as possible from the class of people we believe that term refers to.

That’s my video. It’s captioned. There’s lots of my cat in it. She’s doing cat stuff, but she’s also doing some very specific things she does to get me to move in response to her. (Which is why she has — not a joke — legal service animal status, officially and everything. She can get me moving when I can’t move otherwise. She serves the same role as a human facilitator. And nobody ever accuses her of writing for me.) Apologies for the construction noise in the background, but, that’s another reason captions are good.

And, just for sheer silliness, here’s a video of my cat drinking out of the sink:

Stuff on My Cat. It’s apparently a blog in which people put objects on top of their cats or clothes on their cats and take pictures of them.

It’s hard to describe what’s wrong here.

Maybe it’s that I’ve had people put me into various poses when I couldn’t do anything about it, and thought it was hilarious.

Maybe it’s that I know a guy whose staff treat him like a living doll, and give him things like mohawks and dress him in strange clothes for fun, when he doesn’t ask for any of this.

Maybe it’s that I see the look on those cats’ faces, and it reminds me of the way my cat looks when someone picks her up without asking permission. And the fact that people like that always seem oblivious to the fact that she’s a living creature, not a toy.

I bet it’s the same sensation in my stomach that some people got in their own stomachs, when they thought that I didn’t really write Getting the Truth Out, and thought that I was merely having my picture exploited.

Cats can’t tell you, in English, to stop it, and a lot of people take the inability to say “Stop it” as an invitation to do whatever you want. A cat’s clear “No!” signals can be ignored more easily than a human saying “no,” or even “Stop that or I’ll report you for assault.” A lot of people think that once speech isn’t there, you’re an object, not a person.

That must be why that site makes me queasy. There’s something really not right, not about the website itself, but about the mentality that makes treating living creatures like dolls and stuffed animals, okay. That mentality seems to be pervasive, especially towards people of whatever species who can’t talk back in unambiguous English, or who have so little power that what they say in English can be “safely” ignored (”English” here is because I’m in America, it’d be other languages elsewhere obviously).

(Side note:  The solution to this is much more about shifting power imbalances, than teaching all animals and non-speaking people their “native language”.  There will always be animals and non-speaking people who can’t speak their “native languages”.  Making it totally socially unacceptable to treat people like dolls is feasible, training everyone to say things in the majority language is not.)

[Note: This is my personal response to the murder of Katherine McCarron. For my more political response, read Background, to the foreground.]

Dear Katie,

You don’t know me. You will never know me. You were murdered when you were three years old. But we have something in common: We are both autistic. Both of us have brains that work differently than usual, perceive and respond to the world differently than usual. I wish I could have known you. I bet you were a beautiful and interesting child.

These pictures are of me when I was around your age. I can remember being your age. I remember colors, smells, sounds, and the way the world seemed like a neverending kaleidoscope of experiences, many of which I didn’t understand the way typical people understand things, until later. But I was there, I was experiencing them, in my way, just as I bet you were.

When the first picture was taken, I was getting lost in the deep red-brown color of the hillside that I was facing. In the second picture, I was playing with some fish in the backyard. In the third picture, I was doing what became one of my favorite things to do for many years: Climbing trees. I sometimes had an easier time getting around in trees than I did on the ground.

I wonder if you would have liked any of the same things I’ve liked at different times in my life: Trees, books, marbles, blocks, staring sideways at the carpet, playing with my hair, running, stars, flat surfaces, taking walks, staring at everything upside-down, cats, rubbing fuzzy things on my face, getting pine nuts out of pine cones, picking blackberries, having mischievous but loving older brothers, light switches, sparkly sidewalks, rocks from the moon, typewriters, sliding tape measures, and prisms.

There have been a lot of horrible things in my life. Things that shouldn’t happen to anyone. I guess you knew about horrible things, because dying of suffocation is pretty horrible. I think I came about as close to that as I could get while surviving (physically) unscathed, on a number of occasions. But it wasn’t my mother who tried to kill me. She and I both had some really difficult times when I was growing up, including times when I was going to be taken away from her, times when she was blamed for my being autistic at all, and she had nothing like the support that exists today, but she loved me enough to fight for my life, not my death, even when people were telling her my life didn’t matter.

If you had lived, you might have experienced some of the other horrible things that exist in the world: Bullying from other children, institutionalization, being drugged into a stupor, abuse, and all the other things that are unfortunately common in the lives of autistic people. What they don’t tell you, is that all those good things I talked about, still exist, even though the bad things exist too. They don’t tell your parents that even if you never do a lot of things, there are still things you can do, still ways you can be, still things you can enjoy. And they don’t tell your parents that most people like us can do a lot more than we’re expected to.

I’ve had twenty-two more years in the world than you have, and there’s a lot of things that I still can’t do. When I was growing up, I didn’t get to see people like me doing what I am doing now, so this was a total surprise to me. I live in my own apartment. I get help with the things I’m not good at, that most people are good at. I have friends of kinds I never would have imagined or expected. I have people who care about me and understand me, who value me as who I am, not who I am not. I have a way of communicating that is fairly stable and reliable. I still have to fight for a lot of things, and life is still unbelievably hard at times, but I still sometimes have trouble believing that I’ve found some of the good things I’ve found. Not bad for someone who was ten years ago described by doctors as unsalvageable, which was their own lack of imagination in action.

There’s even a number of communities of autistic people. I don’t always get along with them, but maybe you would have. Even though I often find trouble in these communities, the people in them still understand me better than most people do, and I have some close friends there. That level of understanding was unthinkable most of my life, and so were most of the things that have happened to me since I grew up. My childhood was not remotely blissful, but adulthood has been worth it, and I wish that you could experience what this is like.

Unfortunately, the horrors that happened to you are not isolated. They almost happened to me, too, and although I didn’t always understand the significance at the time, it was still awful. The people who suffocated me laughed as I struggled, I wonder what it was like for you. The day after you died, a 19-year-old autistic man was killed by his parents in a fire. I read that he liked photography. I was his age before my life started beginning to turn into something more enjoyable than it had been in a long time. I was about 15 when people, unknowing of that future, were trying to kill me. People were undoubtedly sure you had no worthwhile future, but the only way to ensure that someone has no worthwhile future is to kill them.

Your future was totally cut off. So was the 19-year-old man’s that I just talked about. You will not have a chance to experience any more of the bad things in life, and that’s what a lot of people will want to focus on, they think your life would have been only misery and pain. But as far as I can tell, the good things outweigh the bad even in a very hard life. There are even good things that autistic people are more likely to experience, and then there are good things that are just part of the human experience in general. And I know that nothing will ever give you another chance to experience those good things, that future that people probably never expected for you, even that past in which there were surely many good aspects of your life. For that, and for the fact that neither I nor anyone else will ever get to know you, I am incredibly sad.

You could have had a wonderful and interesting life beyond anyone’s imagination for you. Now that is gone, and nothing can replace it. And you will never read these words. Your life, and your story, has ended forever.

Kevin Leitch | Dad of Cameron | Mike Stanton | Bartholomew Cubbins | Not Mercury | Mum Is Thinking | Kassiane | Autistic Bitch from Hell | Janna | Zilari | Autism Diva | Kathleen Seidel | MOM-NOS | Kristina Chew | Rose | Joseph | MothersVox | Jonathon | Aspie Dad | Lisa

Participants from outside the Hub:

Laura Cottington

In my last post, A Long-Delayed Reply to the Schafer Report, I touched on something that I’ve described before as like watching a ping-pong game.

I wrote:

I am frequently represented as having spent my entire childhood in an institution, as never having spoken in my life, and as only having been in one institution, usually people assume the kind reserved for developmentally disabled people. In fact I only spent part of my childhood in institutions, I spent time in several of varying sizes and shapes and with varying kinds of people inside, and I have produced plausible-sounding speech sounds with my mouth in the past. Some people view me as misrepresenting myself when they find this out, or even as lying about events in my life, but it’s usually more a matter of the fact that I’m not going to tell my life story every time I meet someone, and my life story defies enough stereotypes that people’s initial assumptions are likely to be wrong. It’s simply too complicated to give out every nuance every time I talk to people, and I am aware that people assume all kinds of things that I don’t have the time to correct them on. If I cannot now speak, have spent time in institutions and say so, and did so in childhood, people fill in the blanks with the rest.

Generally, when people see that I type to communicate, they assume some combination of:

• I can never or only rarely form useful speech.
• I started typing through facilitated communication.
• I have never been able to form useful speech, or even useful-sounding speech.
• I always type as well, or as poorly, as I am typing when I first meet the person.
• I have trouble with the mechanics of speech, but not with language.

Now, some of these are true.

I can never or rarely form useful speech. My utilitarian (as opposed to just random sounds) speech skills vary from none at all to assorted grunts and the occasional word or phrase. And the occasional perfect French sentence that leaves me wondering how on earth I got wired like that, but that has very little practical value.

Some of these are true only some of the time.

I do not always type well, nor do I always type badly. I can type anywhere from among the fastest typists out there, to so slowly that it’s hard to see I’m actually moving.

I sometimes have trouble with the mechanics of speech but can type perfectly good language. I often have trouble with language too, and have to expend a lot of effort putting it together.

Some of these are not true at all.

I did not start typing through facilitated communication. I started typing when I took refuge during breaks at school in a computer lab that had a typing tutor program. I learned to type by doing what the screen told me, and I drilled myself until I became faster and faster.

I did not always have trouble speaking to the degree that I do right now. I gained a small amount of speech as a child, lost that at the usual age that many autistic children lose that, gained more for a bit, and then gradually lost that as well. My suspicion is that speech has always been something that takes a lot of brainpower, is unnatural to me, and is one of the first things to go to conserve energy for more important things, and has now been more or less permanently done away with. (This does not mean this was a choice, this is a set of priorities reflected in the way my brain functions, not in my own decisions, although I happen to agree with it.)

But… this is only just the beginning.

When I explain all these things to someone, it is rare that they understand what I mean. They tend to create a whole new set of assumptions, including:

• When I did have speech, it was always functional, as in it always connected to a thought I was trying to convey.
• I never use facilitated communication.
• I started being able to meaningfully communicate through typing as soon as I became able to physically type.

Well… not so fast.

When I did have speech, it varied from connected to thought to totally disconnected from thought.

I use facilitated communication sometimes, ranging from support at the wrist, to the elbow or back, to someone sitting near me.

I learned typing-as-communication separately than I learned typing-as-mechanics, although typing was always more firmly connected in my brain to communication than speech was.

And this isn’t even the end of it, believe it or not. Some assumptions that tend to follow on from that:

• You could tell the difference between speech that was connected to thought, versus speech that was disconnected from thought.
• My facilitators are trained in FC by FC professionals and move in FC social circles.
• My facilitators are always human.
• My speech is free from “facilitator influence”, whereas my facilitated typing is suspect.
• Writing, typing, and speaking are the only forms of communication I have used.

Speech that was connected to thought and speech that was disconnected to thought could sound the same to a casual observer. They could sound very much like they should have been connected to thought, and they could sound very much like they were just words being said with no real communicative purpose. Either one. And most outsiders could not tell the difference.

Facilitators have generally learned to assist me with doing things, not just specifically with communication, through long periods of interaction with me. They learn which body parts to touch, in what way, for how long, and when, in a very natural way that reflects general interactions with me. They become people who can sit next to me in a particular manner that helps me order my thoughts and movements. They are never told specifically “this is facilitated communication,” the facilitation I use for many actions is just part of what they do for me, and happens to extend to communication sometimes.

My cat is formally recognized as a service animal specifically because she has a knack for those exact ways to nudge, poke, press, and support me. Teaching her to assist me in these areas was easier than teaching some humans. Therefore, technically, my cat is sometimes my facilitator. (I wonder if anyone will accuse her of writing for me!) This may be funny, but it’s not a joke, this is true, she is a service animal because of this.

I have certainly experienced unpleasant levels of undue influence from facilitators before. I have a vivid memory of someone helping me move a spoon to my mouth (not by grabbing my arm and pulling, just by applying pressure in the right spots), and I wanted to do something else with my hand. By the miniscule tightening and loosening of their own muscles, in a way they weren’t even aware of, they made it impossible for me to move my hand the way I needed to, but I could freely move it the way they wanted or expected me to. And I have experienced other forms of ‘influence’ of this nature as well.

However, my experience has been that it is much easier for someone from the outside to influence my speech than it is for them to influence my writing. Perhaps because most of my speech has been the result of “outside influences” of various, not always good, sorts.

My experience has also been that there are people who can exert a certain kind of influence without touching me, from anywhere in a room. They somehow never get called on it, while people assisting me with communication are always regarded as the ones doing it. (I have a strategy of spotting and avoiding such people, but it is not always possible for me to avoid them. They’re generally easy to spot though.)

I have used many other types of communication. Some of it is only visible to other autistic people. Some of it is only visible to people who’ve been institutionalized. Some of it is only visible to people who’ve been institutionalized and had significant problems with standard communication methods (or been prevented from using them). Some of it has to do with the arrangement of objects, the placement of music, and other things that are subtle to most people but do have a language.

Some of those are more comfortable to me than words will ever be.

…and believe it or not, this can go on. And on. And on. Not only in the area of communication, but in nearly all possible areas.

Obviously, very little of this can or should be said in brief interactions with people. This means that people are almost certain to draw several wrong conclusions about me, all at once, and then relay them to others, who believe them as fact.

To be clear, I don’t think there is anything too unique about these aspects of my life. It is not the uniqueness, but the departure from stereotype, that confuses people. It’s a situation where anything that I say will be taken in one more stereotypical way, unless I spend a lot of time chipping away at it.

This is one reason that I hate being told I mislead people. I do not intentionally tend to mislead people. What happens is that people’s brains mislead them and they blame me for it.

I once got a series of sharp accusations of lying, from someone who assumed that I was in an institution throughout my entire childhood. Now, I hadn’t said this to them. It was not true. I had not even hinted at it. But the fact that I was in institutions for part of my childhood means that many people will read it as that. This particular person became very vicious and started demanding to know how I did various things that happened outside institutions, if I was inside institutions at the time. (Simple: They happened at different times.)

Another time, someone told me that having had a boyfriend meant that I wasn’t as severely impaired as I made it sound with my descriptions of my experiences with perception and action. He acted as if I was deliberately misleading people when I described my experiences. The fluctuations in ability over time, combined with the circumstances in which I had a boyfriend, combined with everything else, were not things he contemplated before accusing me of lying or exaggerating.

These are representative of many people who regard me as a liar rather than recognizing their brains as lying to them about the meaning of what I say.

My life is an extreme departure from stereotype. It is not the form of departure from stereotype that is easily resolved by taking on another stereotype, because it pokes right through all of them and all the edges. It is not that my life story is all that unusual — I have had people mistake me for several other people with similar life stories — but that this kind of life does not fit any prevailing stereotype of autism or even of human functioning in general, and it does not fit in a really, really big way.

It is easy for people to assume that I am simply stubborn and wish to refuse to be pigeonholed. Actually, a nice pigeonhole to settle down in would sometimes be very comfortable and inviting. There are just none that actually come close to fitting my life. So I can’t use any for very long, even if I want to.

It would also be easy, in a way, to just let people assume, and in many cases I do, because there’s no possible way of conveying everything in a short time. It is utterly exhausting to be slapped in the face with people’s accusations and assumptions based on the way my life and body won’t bend to what they want it to bend to. It is utterly exhausting to watch people play ping-pong with stereotypes, to correct people only to have them bounce to an opposite stereotype that is no more true than the first one.

If it were just about me, I might leave it at that. I might say, “It doesn’t matter that some people assume just by my writing that I fit their ‘high functioning aspie’ stereotype, and others assume by what I write about that I fit their ‘low functioning autie’ stereotype, and so forth. I know who I am, my friends know who I am, that’s what’s important.” And in a way, it is.

But it isn’t just about me.

A lot of things about autistic people’s lives are decided on the basis of assumptions like these. If some of us are able to make visible the discrepancies between the assumptions on how our bodies work, and the reality, then it makes us more visible as people and less as caricatures. There is something quite important about that. About saying “Hey, wait a minute, we will not be buried under your cardboard cutouts, we are real people, and we exist! We exist in more diversity than you may even want to know.”