Monthly Archives: March 2006

The vulnerabilities of being non-autistic

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I’ve heard a lot of talk about how bad autism is, because of the trouble autistic people get into. We are either harmful to other people, or, through ignorance of danger or lack of social awareness, vulnerable, and this somehow makes autism a bad thing.

If this is true, if we follow that reasoning above, then being non-autistic is a very bad thing indeed.

How many people have been taken advantage of because they were too polite, too invested in social rules, to get out of a situation, or even to see it for what it was? Where many autistic people would have walked away?

How many car accidents have happened because the driver, having a brain that only sees what it expects to see, did not see a problem until it was too late to react to it? Where many autistic drivers would have seen it right away, and used that split-second advantage to react to the situation before it was too late?

How many children have been kidnapped because they were willing to get in a car with a stranger who touched them? Where many autistic people would have been so frightened at the touch that we would have fled?

How many predators have used their knowledge of typical human behavior to smoothly carry out a sexual assault on a non-autistic person? Where the unusual responses of many autistic people would cause them to back off in confusion?

How many non-autistic people have died because they failed to stand up for themselves in a life-threatening situation because of social concerns that autistic people would be unlikely to have?

I am not saying this to minimize anything that has happened to autistic people, or to claim that the above things don’t happen to autistic people. But I look around me, and all the time I see people hurt because of byproducts of being wired standardly, things that might not have happened were they autistic. I see them being hurt emotionally, I see them being hurt physically. Some of them die because of it. Yet I have not once heard someone say, “But doesn’t this mean… wouldn’t it be better if they were cured?” I only hear that when these things happen to autistic people.

Non-autistic people are at serious risk every day because of their ‘deficits’. I’m completely serious when I say that I sometimes wonder how they manage (well… often they don’t, but I really can see a lot of how they do it if I think about it). There’s a lot about the world they don’t perceive, there’s a lot of habits they fall into that are alien to most autistics and utterly dangerous, there’s a lot they don’t understand how to react to. Just as autistics have our own areas we’re not great at, non-autistic people have gaping holes in their ability to relate to the world in a ‘safe’ manner, holes they are ordinarily unaware of and at times have had to discover through science before they noticed them themselves.

It’s my understanding that most non-autistic people are horrified at the very thought of becoming autistic, even if it would solve some of their problem areas and vulnerabilities. Even if in many instances, a dead non-autistic person would still be alive if they were autistic (an idea that a lot of non-autistic people would meet with offense or incredulity, now think of how it sounds to a lot of autistic people when you say the opposite). So, to people who have brought forth these examples of the vulnerability of autistics in order to promote cure, if you don’t want to become more autistic to deal with your vulnerabilities (which, even if you have illusions of their non-existence, are many), why do you think autistics would necessarily want to become less autistic to deal with ours?

A Zometool analogy

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The following is a simple Zometool structure. The way Zometools connect to each other, there’s only one way that they fit together well. The rods each have a different shape at the end, and the balls at the ends have holes for that shape in a geometric pattern that allows you to build large structures out of them. Provided that you start correctly. The following structure is put together correctly. Note the length of the red rod.

The following is what it looks like if you try to put the wrong length of red rod in. The yellow rod is trying to connect to the red rod in the middle of it, instead of at one of the ends.


However, it is possible to force-fit that longer red rod, in a way that even looks stable at first glance. All you have to do is bend the yellow rod a bit out of place.


Here is the beginnings of a structure built on the foundation with the wrong length of red rod.

That location of the red rod at the bottom requires modifications to the structure all around. Zometools aren’t built to be force-fit.


More and more of the structure has to be forced into place in order to make certain connections, because the original connections were not the right ones.


As you can see if you look closely, the structure begins to come apart in places and is harder to put together.


The following illustrates a blue rod that won’t quite fit into the ball.

And the structure falls apart.

Here’s that initial red rod again in that structure.

Here, again, is what it should look like. The red rod should be shorter. This is a sturdier thing to build a structure on top of.


After putting enough pieces of the structure into place, you can physically feel with your hands that the structure is trying to fit everything else the way it is supposed to be. The tension leads the end of the rod to exactly the right hole on the ball.


And you end up with a structure like this, that in some ways looks more precarious but has a better foundation so it stays together better:

Now think of the way autistic people learn. Much of the time, people try to force-fit us, like that red rod, because it seems more intuitive to them. And they don’t see anything wrong with it. But further down the line, that causes all kinds of instability and collapse. But if you go with how we are actually built, and how we actually learn, you can get a structure that may look different than you intended, sometimes different than what you were taught “growth” looks like, but is sturdier, and serves our own functions better.

Or as Donna Williams puts it:

Though others may have had some say
in building up their book of rules,
I had mine given without want,
I couldn’t build one, had no tools.My book has not, my name upon it.
It feels unlike mine in hand.
If not that I relied upon it,
I’d let it fall like grains of sand.(from Not Just Anything)

Why meetings are a problem.

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I’m writing this Tuesday night, although I will probably post it Wednesday morning given how many posts I’ve made close together today. So “today” = March 28, and “tomorrow” = March 29.

I had a meeting earlier today.

As far as I can tell, I was told things like, “If you go with the fandle norblit plan, then this would galleb the noodwer sifdong in the pollafied tridge. But you’d have to do a feeping drudsy mardenforig if you want diens to rowify. And werin on zabfor invilsiddy porren the fandle norblit again so you can get the mardenforig set up.”

Of course, there were actual English words in there. I could even probably have repeated the sounds of them at the time. I could not make them lodge into anything remotely tangible in my brain. Even when I got the sounds right, they just wouldn’t touch anything. I tried banging them against my brain for awhile and gave up. The same thing happened when I tried to read the papers they had given me at the last meeting.

It’s going to be interesting when whoever is involved in this, finally notices exactly why it takes me so long to do anything official. It’s because I end up either having no clue what anyone is talking about, no clue how to talk about what I need to talk about, or both at once for even more fun. The world moves much faster than is possible to keep up with, and sometimes its regulations and such insist that I move along with it, faster than I can actually go.

Get me reading or writing about human rights, or autistic people, or certain aspects of myself, and you will find someone who is, at times, incredibly articulate and literate. Get me off of those few topics, or get me into the wrong approaches to these topics, and you’ll get someone who can’t say or understand a word.

I have a meeting tomorrow. It’s about my hands. Which are not, as far as the tests go, experiencing carpal or ulnar tunnel, or if they are, it’s too mild to show up on the tests. We’ve of course now learned that I’ve got a lot of things that would point away from carpal or ulnar tunnel as being the main cause (although I do suspect I’ve got a mild version of one or both of those in addition to whatever else is going on) of pain for me with this RSI stuff, but the hand doctor has cut me and my staff off so much that it’s impossible to get a word in edgewise. Tomorrow he is likely to make some sort of ridiculous pronouncement based on the tests.

Hands are not my best area of understanding. I am not good at communicating every little nuance of pain and other sensations, even when someone is poking at them, especially when someone is poking at them. My hand doctor is someone who believes in rushing patients through appointments so fast you barely know what hit you, and not bothering to listen to anything he doesn’t find important, as far as I can tell. Among the things he didn’t find important last time were my finger that I can’t straighten, which hurts a lot periodically, and which can’t be fixed surgically therefore it’s not even important to him to tell me why I can’t straighten it (it’s not broken or arthritic). This is probably not good for anyone, but is especially bad for an autistic person.

So tomorrow I get to go to another meeting. One in which I may or may not understand a word that’s being said. One in which I may or may not receive some of the ultimate medical insults (I always love how when something isn’t what a doctor expects, many of them blame the patient). One in which I am very likely to, unless this hand doctor changes drastically in his approach and outlook, decide to find a hand doctor willing to spend enough time to look at all possibilities. When you’re dealing medically with an autistic person, it doesn’t matter how verbal we are or seem to be, you can’t just assume that we’ll tell you the most important facts, so you have to do more work, not less. All I know is that I’m not imagining my hands hurting, and I know what my brain can and can’t generate and this version of hand pain is not in the “can” category.

But my brain is only barely even turning towards hands. For me, writing is like trying to catch a thermal: I can choose which but they have to be there. There are no thermals right now leading to the information that will help me out at an appointment with an obnoxious hand surgeon. I can’t even get myself too worried, because I can’t imagine what tomorrow will be like. I just know that with the blankness towards hands in my brain, I’m very likely to be hit out of nowhere if he decides to be too awful. And if meeting with people who wanted to take the time to communicate with me, today, was bad for comprehension…

The meaning of power.

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When I was a child, my family kept rabbits. We kept them in hutches in the backyard. They rarely got out to play or interact with anybody. They were confined to small hutches for their entire lives.

When I got older, and began to experience confinement myself, I began to see that this was wrong, but still did nothing for the rabbit who lived in a cage now high up in a tree to keep him away from the dog. I was still a child, but I was more aware that rabbits must not belong in small hutches in backyards.

As an adult, I came across information from the House Rabbit Society, which I’m now a member of. They said plainly that keeping a rabbit confined to a backyard hutch is like doing the same to a cat, or (proportionally increased) a human. They are a social species and solitary confinement is awful for them. They need room to run around and play and that is not possible in a hutch.

Nobody in our family bore the rabbits any malice. But each rabbit lived out their life in solitary confinement, and died in solitary confinement. I have experienced long-term solitary confinement, and it is not just the lack of socialization, but the lack of anything to do, the looking forward to only meals as the high point of the day, if you get those… it is highly unpleasant. It must be more unpleasant for a member of a prey species that depends on others of its kind for protection and survival at all times.

I talked to my parents about it when I found out. My mother said, “I had no idea. I had no idea.” My father said, when I brought up animal neglect, “I think I know what you are going to talk about. And… you had help [in neglecting the rabbit].”

I know that I’m now going to live forever with the fact that one animal that I could have done something about, spent his life and died in highly unpleasant circumstances, ones I know the unpleasantness of because I have been subjected to them, only he had no way out. That is the rabbit from when I was older. Aptly named, Reality.

When I was growing up, my parents told me stories about people who “let their rabbits run around the house and had them litter-box trained”. The idea always struck them as somewhat ludicrous, a little crazy. Again, they bore rabbits no malice. They would not view themselves as cruel to animals. And yet until I became old enough to learn about it, I absorbed some pretty strange values about animals (including that it was okay to dump a rabbit by the side of the road in his old age, and that, having spent his life in a cage, he would still live a wonderful life in the woods and not, say, starve or get eaten almost immediately).

a picture of a rabbit in a hutch

That is the meaning of power.

It is not comfortable. It is very possible to get defensive about it. It is scary to wake up to it. Much as Dave Hingsburger has described in Mourning Has Broken, it took a long time to fully realize what had happened.

When I posted this story elsewhere when I was finding out about this stuff, one person got very angry at me. He told me that he didn’t care if I’d found out about how things really were, it was too late, and he’d never trust me. I told him that I didn’t mind that because it might just be one of the consequences of having mistreated a rabbit, even as a kid. I will never, after all, get a chance to make his life any better, or to apologize to him. He’s dead.

I feel bad about it, but feeling bad won’t actually do anything, so I try to cut that off. What will do something is changing my ideas about power, about how I relate to the world. What will do something is telling other people what happened, what can happen, to rabbits everywhere. What will do something is applying this knowledge to other areas of my life.

There are a lot of myths about power.

One of the ones Hingsburger describes is the myth of not having any power, and therefore not being able to abuse that power. “Front line” staff often think they have no power because they are at the bottom of the staff hierarchy. But they are still above inmates/clients in the hierarchy. They can use their “powerlessness” as an excuse not to examine how they are treating other people. When I had power over that rabbit, I had power over almost nobody and nothing else in my life. But I still had power over that rabbit and I misused it, not out of intentional abuse but of neglect. (My father has pointed out that I had help. I did. But I still have some of the responsibility.)

Another myth about power (which I don’t know if it’s in Power Tools or not, because every time I buy a copy it gets snagged by staff and never returned) is that if you’re a good enough person, you will never misuse power. In fact, the more power you have over someone’s life, the more likely you will be to misuse it. Even if you love the person from the bottom of your heart.

In Same, Different, Human (a good review as well as a place to snag a Power Tools quote), Cal Montgomery says (quoting Hingsburger):

“I don’t believe that most people realize,” he tells us, that “they have power,” that “they routinely abuse that power,” that “their behaviour is invisible only to themselves,” and that “their responsibility isn’t diminished because they ‘didn’t mean to’ ” (Power Tools, p. 4). That’s not merely a description of most “direct care” staff; it’s a description of most people.

When I say that I bore the rabbit no malice, by the way, I am not trying to say that to make myself into a better person. I am saying that because it’s all the more horrifying to a lot of people the amount of damage we can do without meaning to, the amount of power we can wield without being consciously aware of it, the amount of evil things that can happen in the name of good or neutral intentions.

Some people will never force a rabbit to endure the suffering I forced (by neglect) on Reality. But everyone will be in some situation where they had power to change something bad and did not use it, or had power and misused it to do wrong. And many of us will be on the other end of it. My example is extreme. But it still happens that those without as much power in a given situation will have power exercised over them, and sometimes it will not be in a good way.

Recently I was describing the clinical words that are used on autistic people, and how there’s a difference between an adult with the power to define themselves, and a child looking up to caregivers and hearing them use certain definitions on them. Someone accused me of objectifying parents, of accusing him of abuse, and several other things.

Being aware of the power we have in the lives of others is not objectifying, and it is not necessarily an accusation of abuse. Abuse of power does not always result in the kind of abuse that people talk about as in “child abuse”.

But being unaware of power is a fast strategy to abusing it. I used to have a staff person who viewed all people as on an artificially equal plane when it came to power, she became terrified at even the mention of her having more power than some other people. The concept that, for instance, she can walk down the street without getting picked up by the cops, was more than she could take.

And she did abuse power, even though she was not abusive of people in a way that legally counts as abuse or anything like that, she was not an “abuser”. She abused power in subtle ways, controlled people, including people she loved, in subtle ways, and because she was unwilling to think about power, she was unable to curb her abuse of it. When people brought power up, she said, “I’m not that kind of person!” As if there is a specific kind of person without the potential to abuse power, and as if trying not to be “the kind of person who could abuse power” would magically make her someone who couldn’t.

When I talk about power, I am not dehumanizing anyone. People may disagree with me over how to use it, and I expect that. What surprises me still, for some reason, is the unwillingness to look at power and how it is used.

When the people with a lot of power over you are people that you know love you, screwups when it comes to power are worse. It was worse to hear from my father that I was “backsliding” when I could not do something anymore, than it was to hear it from professionals. It is worse when I am unable to type and my best friend screws something up in an attempt at translating what is happening for me, or screws up at FCing me, than when a random stranger screws something up. It is worse to hear certain things from people who love us. Their love does not make them immune to misuse (intentional or unintentional) of power, but it can make it more agonizing and problematic for us when the slipups happen.

Being a rabbit in a human household means that you have almost no ability to escape if the humans try to confine you. Being a human unable to talk back, or less able to talk back, or less able to filter information, means you have less ability to change certain ways you are being treated. A mother or father can go through years of their life innocently and lovingly describing their son, now a teenager, now an adult, as “having the mind of a 2-year-old child” and “utterly incapable of thought,” and he might be able to do very little to stop them. This is part of power too.

Misusing power does not always make you an “abuser,” nor does it always make you any less loving than the next person. But it is… a human thing to do. People do this. It happens. It doesn’t make it right. But if misusing power makes someone a bad person, then every last human being is a bad person, and I don’t think that is true. What is true is that we all have the potential to screw these things up, but we also have the potential to deal with those screwups. When I point these things out about power, it is not meant as a personal insult. It is only meant to point out things that happen to everyone. As I said in another post, it doesn’t mean I’m calling you a bad person, I’m just calling you human, and I don’t hold myself exempt from any of this.

I am also not trying to make anyone feel guilty. Feeling guilty is not useful after you’ve been reminded enough of what you’ve done, or have the potential to do. Figuring out what to do, is more useful.

Suicide and autism ‘severity’

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I recently engaged in a private conversation with someone, where we were discussing various stereotypes of the ‘ends’ of the autistic ‘spectrum’. One thing I brought up was that someone had once told me that only ‘high functioning’ people consider or commit suicide.

Given this conversation the other day, it was a little stunning to see a similar statement in an article that is supposedly about ending bias based on ‘functioning level’. The article is called Calling a Truce in the Spectrum “Wars”, by Michael John Carley. Here is the statement:

The problems people face aren’t lessened or heightened by “placement” on the spectrum. They are just different. Think about it: the higher the functioning level, the more the potential for awareness increases. So, I’m certain that when all the facts are in, the higher suicide rates will line up along the spectrum in a pattern that mirrors functioning level. Severely-affected folks aren’t generally self-aware enough to want to consider suicide.

I have known many autistic people who were considered severely affected and considered suicide. I certainly considered suicide when I was labeled severely affected. I have read things by many autistic people who attempted suicide, albeit sometimes ineptly, while labeled low-functioning and severely mentally retarded and so forth. One of the common reasons was not having our awareness of the world recognized, having it assumed that we were not “self-aware”, and knowing what the future had in store based on other people’s treatment of us.

Some of our suicide attempts are so inept that people don’t realize they’re suicide attempts. Some of my head-banging at a certain point was because I thought if I did that long enough I’d die from it. I have taken small amounts of pills honestly thinking they were enough to kill me. I know of an autistic person, who was labeled low-functioning at the time, who tried to fight taking his migraine meds thinking that maybe the migraines would kill him. Do any of these get classified as suicide attempts? Not really.

Which leads me to the question: How are the suicide rates in autistic people, particularly those without a communication system that others understand, measured?

When an autistic person “wanders off” and dies in traffic or of exposure, or “accidentally” drowns, or any of a number of other unpleasant deaths, how does anyone know this was not deliberate? I mean, it can never be known one way or the other. But why does everyone assume that some of us are simply incapable of even conceiving of suicide, and that they can tell, by sight, which ones we are?

I don’t think a suicide rate will ever be able to be measured, because most such deaths, like many of our actions, will be ruled accidental, not possibly having anything to do with conscious will or decision. And some of them will be accidental, but some of them will be suicide.

I do not say this because I think autism is a good reason to kill yourself. But I would be a fool not to acknowledge how hard society makes it to live a good life and imagine a good future for yourself when you are an autistic person. The pressures are very real. The pressure to see your life as lesser and not worth living is very real too. And it does a disservice to those labeled low-functioning to say that they/we/whoever-is-in-that-category-at-the-moment are going to be automatically less self-aware, less capable of thinking of suicide. (As far as self-awareness goes, it seems independent of ‘functioning level’ as far as I can tell. I also don’t think that full self-awareness leads to suicidality.)

This is not an attempt to engage in the “suffering competitions” that Michael John Carley is writing about. It’s more to say, a lot of ideas about those labeled low-functioning or severe, are not accurate, and being regarded the way Carley regards some people, even though he clearly does so with no malice, is part of what causes some people’s suffering to begin with. I suspect the suicide rates, as well for that matter as the ‘self-awareness’ rates, are similar across the ‘spectrum’, except that some people will be unable to complete suicide due to lack of knowledge of how to do it or lack of control over one’s own actions. When some of us despair, our actions are not considered the result of despair, but merely inexplicable behavior problems, or “accidents,” or other things like that. This does not mean we are any less capable of despair than the next person.

I agree with Carley that we should not be fighting based on “functioning level”. But at the same time, as long as “high functioning” people are going to be misrepresented one way, and “low functioning” people are going to be misrepresented another (that Carley actively engages in), there is going to be unnecessary friction.

“I know who you are and I want that person back.”

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I thought I had written a blog entry about this topic already. I looked around, though, and all I could find were things that touched on the topic without making it the main point of the entry. So here, I am writing about how other people think about regression.

Before I get started, I want to point out that non-autistic people do things that, were they autistic, would probably get called regression. They lose the ability to make and discriminate certain differences in sound, an ability I never lost. They lose the ability to discriminate between non-human faces. This is considered a necessary part of their development. When autistic people lose abilities or appear to do so, the reason it gets called regression is not because we are losing abilities, but because the abilities we are (or appear to be) losing are ones that are very important to the people who get to define what is and isn’t regression.

But there’s something that happens to autistic people, when we change in certain ways.

Other people have an imaginary version of us in their head. That imaginary version of us grows along with what they have imagined up about how non-autistic people grow. That imaginary version, that ghost, grows right alongside the autistic child. But it is a ghost, and it is imaginary, it is not a real person.

I have undergone two major periods of drastic change in my life, that most people would label regression. I believe those periods to be not only not what people thought they were, but important and essential periods of growth. I was growing forwards, not backwards. But nobody could see the trajectory.

The result of this is that most people had formed ghost-images of who they thought I was and would become, in their heads. Some of them loved these ghosts with all their hearts. When they talked about wanting the real person back, they were talking about wanting me to mirror the ghosts.

But I am not a ghost. I am a flesh and blood human being. My growth does not change just because some of the people that know me have ghosts in their heads.

Many people experience this phenomenon, to a degree, when they merely make decisions that are different from what their loved ones want. Imagine for a moment that it’s not a decision, it’s your entire brain shifting around, focusing on some things that a lot of people find unimportant or bad, failing to focus on some things that a lot of people find important or good. Imagine that the things it is focusing on are exactly what you need to be focusing on. You are becoming the sort of person you need to be.

Then someone says, “I want the old you back. I want the real you back.”

Now certainly who I really was in the worst of the professional days was not who the professionals saw me as. There was a lot that people did not see about me. But who I really was was also not the ghost in my loved ones’ minds.

“I want the real you back” prompts the questions, “Do you know me? Would you love me if you found out this is the real me? Aren’t you supposed to love who I am, not who you imagine?”

Before anyone lashes out at me about that, those are just the natural sorts of thoughts that will flash through the head of many people whose loved ones are trying their best to rescue them from being who they are. Whether you do the things that frequently create those thoughts is entirely up to you.

By the way, this is even true of changes that are traditionally viewed as very negative. I have known of many people who, after brain damage, have all their friends say they want them to be the person they were before the brain damage. It doesn’t happen. It’s not real. It hurts them. It’s not that they wanted to get knocked on the head, it’s that who they are now happens to be a person who got knocked on the head, not the imaginary person that didn’t.

I happen to view the changes that have happened in my life as, mostly, different than getting knocked on the head. I would do them all over the same way, with one exception: I would have rather the people around me had not spent so much time referring to “progress” when I became more as they wanted, and “backsliding” or “regression” when I became less as they wanted, I would have rather not been set the impossible task of being someone I could never be, I would have rather never heard “I’m seeing a bit of the old Amanda” or “I want the old Amanda back”.

That can’t change. I don’t want apologies or discussions on the topic from people who were there at the time for me. It’s done. I’d rather not think about it, frankly. But I am writing this for the people who have the power to change that for their loved ones, right now, or who will in the future. That, rather than silly attempts to change the past, is what I’m after.

Also try to remember that some things you think you see in autistic people aren’t going to be true. Absence of certain behavior does not always mean absence of a loving nature, absence of understanding of certain things, etc. (I still get regularly accused of heartlessness, nothing could be further from the truth.) And what you view as your ordinary child being missing and stolen… no.

Now, after writing this, I see that I have written a few things about this on my other blog.

See:

The vehement defense of prejudicial behavior.

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The Autism Diva recently posted an article about an autistic teen who is advocating for reform of the same special education system that he himself ended up in. Someone posted a response to the effect that he is inspirational, not for reason of inspiring people to action, but for reason of having overcome a lot to get where he is today.

I wrote that while I could not speak for him, I doubted his intent was to inspire through his story, but rather to highlight an unjust system.

I had reason for what I wrote (some people think I respond to the word “inspiration” the same way in all contexts and am merely being hypervigilant here, and that is not true). Some of it is summed up here in John Kelly’s Inspiration.

This is the bad faith of the inspirational story: that which we overcome is what has been done to us in the first place.

But what’s interesting to me here, is not so much the meaning of disability inspiration, which I can discuss another day, another time. But the vehement reaction of people who say they were “inspired” by something (in this individual sort of manner), and who are then told “You know what, this might be the wrong way to look at it.”

The reaction I got this time, was basically “I guess I’m not intellectual enough for around here, sorry for wasting your time, bye.” And then coming back later to say that, regardless of what anyone said about me, the person felt scolded by me, and that they were glad of everyone who “defended” them against me, and that I was basically calling them stupid and a terrible person and a lot of other things I never said. They provided more and more detail showing that, in fact, my conception of why they said “inspirational” in this context was quite accurate. But I was not supposed to say so, I was supposed to agree the more detail they gave that in fact they did not mean it in exactly the way they kept saying they meant it.

That they viewed my comment as something that needed defending against, reminded me of this quote from Cal Montgomery’s article Project Cleigh:

For those of us who encounter these incidents over and over and over, they aren’t isolated. They’re a pattern. They’re a pattern perpetuated (often unthinkingly, but unthinking does not necessarily mean okay) by people who see the little reminders that we are not as good as regular folks as entirely normal. Entirely natural. Entirely justified. And they’re a pattern that has a tremendous effect on our lives.

Like members of other groups who face regular reminders that they have their places and should stay in them, our attempts to convey to other people what the problem is seem to them like weird acts of discrimination against them, because we are trying to deny them their right to degrade us over and over again. “I didn’t mean it that way,” they say, or “You have to understand.”

That’s exactly what seemed to happen today. The comments I got when I tried to explain the problem seemed to often come from the viewpoint that I was oppressing someone else, or at the very least, that I was overreacting. (How “I don’t think he meant it that way” was an overreaction, I don’t know. I could have gone into a lot more detail and still been justified.) That my own attempts to convey these ideas were bad enough that they needed to be defended against.

But the sheer level of hurt defensiveness in the responses is what is unnerving to me. Elsewhere in that article, Carol Cleigh (the article’s named after her, and the author of the article describes her as inspiring in a non-problematic way, as in “inspired to action”) describes having a door ripped painfully from her hand by someone trying to “help” her. When she tried to do something about this situation, the door-grabber responded with yelling and physical violence.

I do not think the person I am talking to right now would have resorted to violence. But — and I am sure this is to her evidence that I’m calling her a bad person again — the same mechanism seems to be at work here. The extreme defensiveness that Carol Cleigh encountered, seems to spring from the same source as the extreme defensiveness that I and others encounter among people who feel like we are infringing on some sort of sacred right of theirs when we talk about the problems of certain kinds of “inspiration”.

I use a wheelchair. I can’t speak. I don’t always have access to the ability to type, particularly when people are grabbing at me. Grabbing the arms of a wheelchair without permission is the same as grabbing somebody by the shirt and dragging them around or holding them in place. It’s a form of assault to grab someone’s handles without permission. Normally my only possible defense against this kind of assault is to calmly reach around and pull the person’s hands off my chair, without even hurting them, then go on with what I was doing.

One time, I did this and the person erupted. She started screaming and crying. She talked about what an awful person I was, and how she was only trying to help. I was (I was not in a setting with a lot of power) made to apologize to this person for hurting her feelings so badly, but they saw no need for anyone to apologize to me for grabbing and immobilizing me.

The message in all of this is: It doesn’t matter if we cause actual immediate physical harm to you. It doesn’t matter if we cause physical pain. It doesn’t matter if we restrain you. It doesn’t matter if we assault you. It doesn’t matter if we say things that are themselves linked to an entire way of thinking that causes great harm to you and everyone like you. What matters is that you not hurt our feelings by trying to defend yourself, pointing out what is happening, or other actions meant to protect you or others like you.

I doubt that is actually the message anyone is trying to send. I do not think they think of themselves as assaulting us, as holding viewpoints that cause us great harm, and so forth. And I think that in itself is where the problem lies. When we point these things out, politely or bluntly (and as an autistic person I don’t even have access to anything but bluntness in my communication repertoire), they think we are striking at something deep in their self-concept as good people, and turning them into terrible people. That, I am almost certain, is where the bulk of the extremes of defensiveness are rooted.

I’ve posted before about the confusion between “doing good” and “being a good person” that a lot of people have. I think there’s an opposite side of the coin, in which “doing bad” is considered “being a bad person”. These are natural ways to think about things, and I think nearly everyone does think that way from time to time, but they’re ways that should be resisted. As human beings, we all do things that are right, and do things that are wrong, and do things that are a mix of the two.

But it is not even a wrong thing to do, to react to or point out prejudice, or actions that come out of prejudice, or an unexamined sense of superiority, or anything else like that. These things need to be pointed out. Pointing them out is not the same as calling someone a bad person, and reacting as if it is, is just one more way to ensure that the bad kinds of prejudice (and there are bad and good kinds, people would not survive long without any prejudices, but there’s a bad side to that fact) stay entrenched and defended. I am glad that people have pointed things out to me at times, rather than letting them slide. It may not feel good, but there’s more to life than feeling good in the short term.

There’s also a profound difference in what’s at stake. For disabled people, in the situations I have described, what is at stake from the prejudices and actions of others is our safety, our value as people, our health, and at times our lives. Even things that seem like mere insults, are actually often reflections of prejudiced attitudes that can mean life or death for us. For non-disabled people, having this pointed out to them, what is at stake is their hurt feelings at the mistaken impression that we are calling them bad people for contributing to these things. (Of course, there are disabled people who buy into these things, and non-disabled people who don’t. For all I know, the author of the article is not personally insulted by being called an inspiration for what he’s done, but since this is not just about his personal feelings either, it’s still relevant.)

It shouldn’t be a mystery, then, when I choose to point out these things. Given what’s at stake. And why I choose to stand by what I have said. What I am writing though is not just about today, not just about this one situation, and not just about me.

People reading this can choose to take it as me calling them bad people (and once you take that perspective, it’s not hard to view me as piling insult after insult after insult and being generally mean and nasty), or they can choose to take it as me calling them people. People (including disabled people) tend to be raised with a large number of prejudices against disabled people, and tend to act on them, and these end up having dire consequences for disabled people overall, and forming a pattern even if the people doing it can’t see the pattern, so mentioning this is in a way pointing out the obvious. But it’s also very necessary — without mentioning it, all that would happen is things would continue. Someone pointed out to me yesterday the assumptions I was making about him, and while it was certainly confusing and unpleasant at the time, I ended up having to eat my words. So it goes.

Why do you think I must want to be like you?

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[I can now tell from the first comment that people who do not want all autistics to be of the same general type may take offense at the question. If you’re not doing this, you’re not the person I’m asking the question of. There are plenty of autistic people who do think that all other autistic people want to be roughly like them.]

This was the question I was asking when I wrote The Oak Manifesto. But it was not just a question directed at non-autistic people.

Non-autistic people do frequently hold the opinion that everyone must want to be like them. That, in fact, those of us who think non-autistic people do a good enough job being non-autistic but that we’d rather be autistic, are just repressed, in denial, hiding something from ourselves. Many autistic people have written and spoken eloquently about why these opinions about us are false.

But few autistic people have taken on the same opinion when held by autistic people about their own — real or perceived — category of autistic people. It is taken as a given that certain ways of being autistic are just self-evidently better.

When I was a child, my life was being directed by those around me — without knowing it, just as “what people should do” — towards the more valued category of autie. This is not how they saw it of course, not in those terms. They saw it as being all that I could be and fulfilling my potential. But I was being guided in the direction that, unchecked, leads to the “‘valuable’ and geeky even if socially inept” sort of person.

Puberty is when among other things your brain shifts around to its adult form. If my real potential lay where everyone thought it did, I suspect my brain would have shifted more in that direction. It had its own ideas about who I should be, though, and shifted in such unpredicted ways that not even I could fully recognize myself. In hindsight, though, even as a kid I saw things going very wrong that nobody else saw and I suspect the drastic shift was partly about righting those wrongs and putting me on the course I was meant to be on. Not that any of us recognized that at the time.

At any rate, it has become more apparent over time that I am who and what I am supposed to be. (In at least four dimensions, for those who view that in only three, leave out time, and assume stagnation is implied.) Right now, I am no more meant to be the stereotype of “HFA/AS” than I am meant to be non-autistic. I stand a better chance of becoming that stereotype than I do of becoming non-autistic, but so far there is little sign of either one happening.

There is an increasingly common view among autistics that I am just an aspie (I’ll use that term within this entry as a shorthand code word for that stereotype, apologies to those who use it differently) with “co-morbid conditions” making me “low-functioning” but which could be cured to release my inner aspie. That basically I am an aspie with defects. By this viewpoint, I could not possibly object to curation because it’s not autism they want to remove, just co-morbidities. Then I could be healthy and happy. Like they are.

The first thing I object to is the term co-morbid. That term implies a negative condition going along with another negative condition. It puts all conditions described, including autism (that’s the “co-” part), in a negative light and a highly medical perspective. It simply does not belong in use here.

The root of my objection, though, will be familiar to most autistic people. Autistic people are not just non-autistic people with good things taken away or bad things added. We would lose things deeper than personality if it were possible for us to become non-autistic. Non-autistic people think often, though, “All cure would mean is taking away these bad things, what’s the fuss?”

Well I simply am not an aspie stereotype with good things taken away or bad things added. If I ever became an aspie stereotype I would lose things that are deep down and important to me. Spending my time aping that stereotype (if possible at all) would be just as draining to me as passing for non-autistic is for people who can manage that.

By this I am not saying that “aspie stereotype is to my kind of autistic as non-autistic is to autistic”. I have far more in common in the areas that the word autistic has to do with, far more, with any kind of autistic person, than I do with the average non-autistic person. But there are different sorts of autistic people, too, and we do not benefit from being forced to act like each other or become each other.

By different sorts, I do not mean the traditional diagnostic guidelines. I certainly do not mean functioning level. I do not mean differences of opinion (sorry all who try to claim this, but “wanting cure” is not and will never be a true subtype of autism, it’s an opinion that crosses all subtypes, as does its opposite). I mean something deeper and harder to define and all but unrecognized by autism professionals.

I mean the reason that Joel Smith and I could instantly comprehend each other’s body language and thought patterns without having met before. I mean why Laura Tisoncik can similarly read Larry Bissonnette very easily, why Donna Williams said she and Jim Sinclair had something in common that not all auties do.

I mean why I can identify strongly with the writing and mannerisms and general patterns of several autistic people, and less with others, who might make more sense to each other than to me. These are reflective of some of the genuine similarities and differences between us, and they cross all official lines of categorization.

You can’t unwrap all these supposedly “co-morbid” conditions from me and release my inner aspie, any more than you can unwrap autism from any autistic person and release their inner non-autistic person. You can certainly look beyond your assumptions about appearances and perhaps see something far different than you initially realized, but that is not the same as us really having an inner NT or something.

Of course, you could divide me up that way. It would be really easy. You could say, “Okay, this person has symptoms of Tourette’s, catatonia, OCD, stamina issues, migraines, seizures, central pain, self-injurious behavior, and fill-in-the-blank for pages.” You could medicalize every single part of me but what you deemed the acceptable, autistic part, and you could try really hard to “fix” all those things (or in some cases imagined things) to release my inner aspie. But why are you so sure I have an inner aspie to begin with? And why are you so sure some of those things you’re trying to remove aren’t attached? (Here’s where I get told I’m advocating no medication for seizures, I bet. No.)

I’m saying the above simply because I know one of the common replies to this kind of post is “You must only be autistic and not have these other problems and just don’t understand how difficult it is, etc.” No. I just happen to view myself very differently than some other people with the same string of diagnoses and potential diagnoses. Don’t ever confuse viewpoints with diagnostics. So many people who remember that when it comes to being autistic and having viewpoints against cure, forget it when it comes to being the kind of autistic that everyone wants to turn into a different kind of autistic.

So no — to people who believe this sort of thing — I have no particular desire to be like you. No more, perhaps, than your desire to be like me, that you make so clear in your assumptions that it’s just plain better to be like you. I’m sure you’ve said similar words before, to non-autistic people. It’s also true that autistic people can convey similar concepts (words or not) to each other, as I am doing to you.

I will go through my life trying my best to be whoever I am meant to be. Who I am meant to be has often conflicted with the wishes of others, with the false constructs of proper lives that people’s minds come up with, with the values of any given society, and with many other things, not through any desire for conflict, but because of a steady and unyielding push in directions that are perhaps less traveled and less valued. This is not something I chose but it is not wrong. I am connected to the rest of the world, and I have a particular place in it, and I will do my best to be in that place, wherever it moves. The things I am saying here are not limited to me, nor am I claiming perfection or lack of struggle or hardship, merely that there are many roles to fill in the world and what people commonly think of as what people need to be doing is not always what we need to be doing.

Right now, my place is not to be an aspie stereotype, any more than it is to be a non-autistic person. Both have been expected of me at times, but neither has been all that forthcoming in the general plan of things.

Meanwhile, the way I am, the way all of us are, has a point to it. The point is not to make all autistics into copies of the ideal autistic any more than it is to make us into copies of the ideal non-autistic. We are different from each other for the same reason we are different from non-autistic people. And as usual, difference does not mean we need to be fixed or should long to be like those who think we automatically should want to be like them.

Episodes, and other clinical terms.

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When I became more heavily involved with the medical system, an interesting shift of terminology occurred around the way my life worked. It was now divided into normal (something that was never even named), and “episodes”.

Episodes were varied. The word seemed to refer to:

  • Seizures.
  • Meltdowns.
  • Shutdown.
  • Periods when I moved very slowly or not at all.
  • Loss of speech.
  • Motor or vocal tics.
  • Behavior that other people could not explain.

For instance, if I got overloaded during an appointment, and curled up and hummed, that was not overload, that was “an episode”. If I took a walk and seemed oblivious to things, that was not an autistic person taking a walk, it was “an episode”. If I freaked out and started screaming, that too was not overload, it was “an episode”. If I tried to run away from captivity, that was not a normal response to such a situation, it was “an episode”.

I’m not sure how to convey exactly how sick I got of hearing “Amanda had an episode today.” Or “Amanda had a [fill-in-the-blank] episode today.” It seemed like almost overnight my life had become a series of notes people were taking on my behavior, and the bar was always far too high, resulting in frequent meltdowns and shutdown, resulting again in this episode crap on the part of everyone who was dealing with me.

What I needed was not for people to endlessly discuss these things, and not to treat them as if they were “bad” in some way and needing to be eradicated at all costs, but to actually grasp them as something integrated into my life. Episode denotes something separate from ordinary life, and these things are part of my ordinary life, they’re seamlessly integrated into it, yet everyone wants to denote them as something else. Something different. Something separate from me and my life.

To have people taking notes on these things, recording them, putting me under a microscope, talking to each other about them, only involving me insofar as I would go along with what they wanted… this was not useful.

These days, I run around blogs and I see people using terms like episode, dysregulation, and other very clinical-sounding terms to describe and understand themselves or their children. And then I see things like Danny’s Episode with Abnormal Movements, and I can relate too much to Danny, both in what he is doing (that sort of thing happens to me regularly) and the way others are describing him (which enrages me).

I cannot, just cannot, imagine my parents running after me with a camera on a day like that. I have a lot of days like that. On a day like that I want to be helped to lie down — which will take effort — and then covered with heavy blankets if possible. I can run around so much that I start getting asthma attacks, otherwise, and then I can’t control movement enough to use an inhaler, so it’s serious. I don’t want the kind of saccharine “caring” I sometimes get on those days, but I also don’t want to be chased around with cameras.

I just keep wondering, for Danny, and for other people who are still being described in these ways that separate off these portions from our everyday lives and medicalize them, how they feel about being described this way, how it shapes their conception of themselves, because it certainly screwed with mine enough when I was a kid. There’s got to be other ways to handle things like this than to treat them in this medical, detached-from-the-person way.