And one thing I learned from that is that not everything that I’ve attributed, and seen others attribute, to autism, necessarily is. Because in being treated like a person, actively rather than passively, by the majority of a large group of people around me, I discovered aspects of myself that I didn’t know existed, and whose non-existence I’d previously ascribed to being autistic.

Which got me to wondering something.

How many of the emotional and social problems autistic people have are actually related to being autistic?

I’d be willing to bet it’s less than it looks like.

I have a depth of emotion and social relatedness that I did not know existed until roughly last week. It has totally changed the way I perceive myself, and it has totally changed the way I perceive other people. It’s very difficult to perceive certain aspects of people in general if you don’t know they exist, and if the reason you don’t know they exist is because you’ve basically blocked them out of awareness in order to survive.

I was an incredibly emotionally sensitive and empathetic kid — like a lot of autistic people I’ve talked to, actually. But as an autistic kid I was also a walking target the moment I met other kids. Autistic kids, for some reason, seem to get more than the usual share of this. In fact before we moved when I was still a baby, my older brother was the scapegoat of the entire town we lived in. And as I got into school, I became as subject to bullying by teachers as I was by other students.

My initial reaction was just sheer emotional overload. I came home and screamed and cried for hours. I couldn’t understand why people hated me so much, I hadn’t done anything to them other than exist near them. And eventually I just went numb. Nothing the few people in my life who did treat me like a person could do, was enough to counteract the fact that in the majority of my life I was treated more like a target. The only way I could deal with it was to cut off the parts of me that knew what it was like to be treated like a person.

I’m not telling this story to make you feel bad for me as a person. I’m telling it because assorted variants on these experiences are so close to universal among the autistic people I’ve known. How can you get a good idea of the social abilities or emotional range of a set of people who are treated like this from the moment we encounter other children, sometimes from the moment we encounter other people at all?

Because even the most well-meaning of our relatives can also cause problems for us in this regard. As autistic people, our responses to our parents are often (not always) different in some way than non-autistic people. Many parents unfamiliar with autism will conclude that we are uninterested in them, or even averse to their presence. Even some who see us as socially related to them will be told by doctors that, if we are autistic, this is an illusion, and that autistic children don’t relate to our parents. (Scientific studies, by the way, say otherwise. We do in fact generally have the same degree of attachment to our parents as any other kids.) The myth of the refrigerator parent has been replaced with the myth of the refrigerator child, and many of our parents will believe the new refrigerator child myth.

This in turn affects how they relate to us. If you think that your child is indifferent to you, even rejecting you, you treat them differently than you would treat a child who isn’t. You might either spend less time with them, or spend an inordinate amount of time trying to force them to connect to you in ways that might be physically uncomfortable to them. You might talk in the child’s presence as if the child is not there and cannot hear you. You might characterize the child as lacking in some fundamental attribute of humanity. You might bombard the child with overbearing social approaches that cause the child physical pain without meaning to.

Any and all of which can give us a pretty warped experience of social situations within our own families. Note: I am not trying to blame parents for children being autistic, or for their own ignorance of what being autistic is. I know that discussing parenting in autism in this manner is a taboo subject because of the old psychoanalytic theories of autism (theories I’m familiar with because my own mother was subject to them even as recently as the nineties and I’m very aware of how much pain they cause for families). But I know no way to discuss the effects of growing up autistic around families who don’t understand how to relate to autistic children, without getting into these topics, taboo or not.

An interesting aspect of this in action was the “Autism Every Day” video in fact. I showed the video to the people at the MIT Media Lab recently, but instead of watching it straight through, we stopped it and focused on the social behavior of the children in the video, and the parents in the video. The interesting part to me was that the social behavior of the children was not only often invisible to their parents, but often invisible to the people who worked at the Media Lab as well. I had to point out to them things like one child speaking to her mother and inquiring about her mother’s emotional state, another child’s affection, another child looking up at his mother’s face to gauge her feelings. We concluded that somehow through the camera person focusing on the mothers, combined with the mothers focusing on the camera people, the viewer’s focus was not on the social overtures of the children, who were then possible to describe as not engaging in social overtures even when they were very clearly affectionate, social, and concerned with their parents’ feelings.

So again, how do we measure innate level of social skill in this context? This is a context where autistic people’s parents are somehow (possibly by training from doctors, possibly through instinctively looking for a different set of social cues than the ones we use, possibly because of some other construction they have in their heads that overrides what’s in front of them) clearly not noticing our social approaches or our concern for them.

But it is also a context where many of the things — such as eye contact and physical contact — often used by parents to show affection for their children either panic us or cause us physical pain, and where our “emotional growth” might be measured by others in terms of how much we can deaden our bodies and emotions and allow ourselves to be subjected to terror and pain on a regular basis. Imagine growing up somewhere where to be hit upside the head and locked in a room with a large predatory animal are the two highest forms of affection, and your emotional development is gauged on how well you learn to put up with those situations. To people who experience certain kinds of touch as pain and eye contact as a predator-style threat, that is some part of our experience growing up. And that is an experience we can have in the most loving and caring of families, if our families don’t understand what those experiences feel like to us (and not all of us show pain and discomfort by pulling away, either, so it’s not always possible to gauge our reactions by that sort of thing).

So most of the family situations available to autistic people are some combination of the following, at least at first:

1. Not noticing or understanding the way in which we show affection, social relatedness, and emotion.

2. Using, with good intentions, social approaches that cause pain or fear in us.

3. Forcing social approaches that cause pain or fear in us in the hopes that it will make us into more socially related people.

4. Gauging the appropriateness of our social development in terms of our ability to silently endure that pain and fear.

5. Lacking the sort of social approaches that we can actually process and handle as autistic people.

6. Hearing things said about ourselves, in our presence, that are not true but that we might absorb really early. (Both hostile things and innocent misinformation, potentially.)

This is not to say that our families don’t love us, don’t care about us, don’t want to be doing the right thing. We are born into the usual range of families that any other group of people are born into. But these sorts of things happen even in most well-intentioned and loving families.

And most of our social experiences outside the family are of some combination of rejection, ostracism, hostility, and hate.

What does this do to us?

Can anyone say that in all the time that autistic people have been studied, from the days of the refrigerator mother theory to modern-day genetic theories, anyone has ever separated out what is intrinsic to autistic perceptual structures and what is other things, such as the adaptations that we have to make to a world that is so consistently hostile to us even in environments that would seem loving to most non-autistic children (and we’re often in environments that would not even seem that)?

Because I don’t think they have.

I still have the perceptual system that makes me autistic. But many emotional and social connections are no longer walled off the way I had to make them to survive earlier in life. It’s sort of like the bruised nerve I just got at the dentist, that started out making half of my chin numb, then flooded with pain, and now subsiding to something near normal. I’m past being numb, and getting past the flood of pain, and getting to some level of whatever is normal for me.

There was a level of detachedness, selfishness (the genuine thing, not something mistaken for it), and other things, that were there almost all the time before but have melted away along with the numbness. (I know I must have caused problems for people with some of this stuff. I’m sorry.) I can feel parts of myself internally that I couldn’t before, and I can now perceive parts of other people that I couldn’t before because I was too busy denying that they existed in myself. Things are changing very fast, and although this was gradual in coming, it feels sudden.

And I want to know how many of my emotional and social problems of that nature could be truly blamed on autism (the cognitive and perceptual state), and how many could be blamed on growing up autistic in an extremely hostile environment for autistic people. And I want to know how much this discrepancy exists for other autistic people.

I want to know what a world would look like where autistic people were really and truly accepted in all areas of life, and interacted with in ways that were accessible to us. At least, to the extent anyone else is. I wonder if we would look more empathetic and more social if we didn’t have to deaden those parts of us to survive the onslaught that awaits most of us at school and other places, and if we were around enough people who resembled us that we had early exposure to people whose body language and such made sense to us. I wonder what people with autistic perceptual systems would look like in an autistic-friendly world, and whether our differences would still be too often described in terms of “social skills” and so forth.

That’s a post by Zilari that everyone should read. Laurentius Rex also wrote a Larry Arnold Myth and Reality post recently. I’ve wanted to write a post like that for awhile, but the reality is often far longer and harder to write about than the myth, so I’ve steered clear of it.

One myth that I haven’t seen mentioned on either of those posts, though, is one that’s still hard for me to wrap words around. Something like: The myth of the autistic person as having priest-like powers to absolve parents of real or perceived sin.

Years ago, I was talking to a mother of an autistic kid. She seemed to have some desire to get me to pronounce things she was doing okay, as if me saying they were okay would make them okay. She talked about how she stared at her son sometimes and wondered what things would be like if he’d been normal. And she talked about wondering and wondering and wondering if it was the vaccines. And she seemed to not be satisfied in telling me this until I said something along the lines of “Yeah, those things are understandable.”

Later, I’ve had people throw things they’ve done in my face, weapon-like. Another parent who had institutionalized their child told me all about what a wonderful and caring parent they were, and what a wonderful and caring institution their child was in. They really seemed to want some kind of acknowledgement that institutions were really okay. When I didn’t give it to them (and told them I was not going to continue the conversation), they wrote several times a day with increasing amounts of detail about what a loving person they were and how I had grievously attacked them even if I looked innocent. The accusatory posts (ones in which many false and negative things were said about me) came so many times a day that I had to stop reading the forum until the person either left or got banned (I can’t remember which).

That’s an extreme example. Most people don’t become quite so overtly hostile. But many people do seem to look to autistic people to reassure them that what they are doing or have done is okay. And often go to greath lengths to justify to any autistic person they meet that whatever program they do or don’t have their child on is really okay and really useful in this child’s case (whether or not it actually is).

The reality of the myth is that neither I nor any other autistic person I know has the power to make things right that are not right, or to convince a person that they are doing the right thing if their conscience keeps bugging them. If we do provide such reassurance, it won’t make it real, it won’t make certain things right. Those things are between a person and whatever it is in their life that they attribute a sense of ethical behavior to.

An autistic person’s reassurance won’t make anything better. What it will do, though, is possibly make a person feel better for a time about whatever they are doing, whether what they’re doing is right or wrong or some combination of the two. It will also lend some kind of credence to what is going on — “See, an autistic person approves of it, therefore it must be okay.” And it can even be used against other autistic people: “See, this autistic person approves. He’s a nice autistic person who is truly interested in the welfare of other autistic people. The rest of you who don’t approve? You’re just cold, heartless people who don’t understand the real situation.” One thing it doesn’t do is automatically make something okay. Any so-called “treatment” for autism can acquire at least one autistic person backing it. It doesn’t make them, or the mindset behind them, correct.

So, to anyone who comes to me (possibly to any other autistic person, but for all I know some don’t care) and tries to justify everything they’ve ever done to their child, in the hope that I’ll tell them, “Yes, that’s really a good thing” (and I’ve known people who are explicitly doing that, so if you’re truly not doing that, I’m not talking about you, but if you are doing that and want to think you’re not, go detangle your head or something) you’d be better off just trying to figure out right and wrong. I’m tired of being put into situations where the only acceptable or compassionate answer is considered to be “You’re right, you’ve done nothing wrong, you need to change nothing.”

When people interested in the rights of rabbits tell me that keeping rabbits in hutches with no stimulation grievously harms the rabbit, I do not tell them, “I put my rabbit in a hutch before. And that was right for my rabbit. Please tell me that was okay. I’m a good person. Really. I petted my rabbit. I fed my rabbit and gave him water every day. I’m not a monster. I didn’t do anything wrong. I loved my rabbit. And I was only a kid. Don’t hold it against me.”

Most, in fact, understand the concept of having done something wrong and knowing it was wrong and changing what you’re doing. But I doubt they’d have the patience for someone trying to prove that what’s really a form of animal cruelty is right, even if it’s genuinely true that for a long time I didn’t know any better. If I were sitting there trying to justify it to myself by justifying it to the House Rabbit Society, I’m sure the HRS would eventually just want me to go away, and they certainly would not sit there and tell me that my attitude was understandable and that I was clearly a loving person so what I did didn’t harm that rabbit after all. If I showed remorse, most of them would accept me and even work alongside me, but I doubt they’d want to accept what I’d done, and I wouldn’t want them to, fear of being wrong gets in the way of doing what’s right (and is also, in the form I’m talking about, just plain self-centered, always directing things back to “Am I a good person?” and making everyone around the person get into the role of reassuring them and taking care of their feelings).

But in the autism community, one role given to autistic people is to absolve parents of any guilt they feel about their attitudes and practices. And that’s not something we have the power to do. Even if we pretended to have that power, it would be hollow. We can’t do that for you. That’s the sort of thing parents have to work out (and really work out, not just come up with a long string of rationalizations glued together by prejudices and misconceptions or something) for themselves. Nobody — not autistic people, not other parents — can do that for them, any more than a person telling me that my prior attitude to rabbits was okay, could do that for me.

There is one condition in which it is obvious to even an untrained observer that the person with autism is not doing the communicating during a FC session. This is when they are staring at the ceiling or directly away from the keyboard.

If you attempt to type with a single finger, you will only find the correct key reliably if you can actually see the key that you are aiming at. It is common knowledge that if you stare at the ceiling when typing with one finger, you will normally miss most of the characters. On a typical PC keyboard; you will typically be offset by one or two keys on the keyboard. This is true even for people who are skilled typers.

Most “skilled typers” are touch-typists. Most touch-typists do not gain their ability to touch-type overnight. I know this because I am an extremely skilled touch-typist. When you see beginning touch-typists, they will be staring at their hands unless prevented from doing so. It took me years of dedicated practice to become as proficient as I am at touch-typing (by which I mean as fast as I am).

Touch-typists are trained in a very specific method of finding keys. We are trained to use a specific set of key positions, called the “home row,” and use that as a reference point. Many touch-typists don’t even know the layout of the keyboard in their heads, they just know it in their fingers in reference to the “home row”, and do not even know the distances between the keys if using just one finger. To expect a ten-finger touch-typist to convert to one-finger typing without looking at the keyboard is usually expecting too much. A few people, including me, can do it on their first try, but not a lot. Like ten-finger touch-typing, one-fingered typing is a skill that has to be learned, it isn’t just there from the beginning, either one cannot be converted into the other.

I have spoken with many autistic people who, like me, can type one-fingered without looking. One of them recently even expressed surprise that people find this a difficult skill, or that people would believe it impossible. Morton Gernsbacher states in one of her training videos that her son, who types independently, glances at the letterboard a few times to get a feel for the size of it, and then looks away while pointing one-fingered at it with great proficiency.

Then take a look at the Religious Tolerance folks. They had someone try to type the words “facilitated communication” without looking, with one finger, and they could not do it. This was proof to them that it was impossible, and that therefore, if a facilitator was looking at the keyboard, and a typer was looking away, it was the facilitator who was really typing the words.

The latest addition to the Getting the Truth Out website covers this topic, including a video of the author of the website staring at the ceiling while typing a sentence with only one error.

As is pointed out there, it’s very interesting that part of the reasoning behind this seems to be “If normal people couldn’t do this, you people couldn’t possibly.”

That is the same reasoning that prevented researchers from finding the stuff that Michelle Dawson, Laurent Mottron, and others at their laboratory found, about perceptual strengths in autistic people. People had been too busy looking for ways to explain autistic people’s strengths in terms of what we are not (according to them) good at, to look at the opposite possibility. The notion that there could be anything about autistic people that involved being better at something than typical people tend to be, without being the result of a “deficit” in comparison to non-autistic people, just seems too confusing for a lot of the so-called experts in the field.

This is not to say, that if we really were just plain lacking some particular capacity, that we would be of any less value. I do not believe that. But I find it very interesting that many of the ways disabled people are judged in general, seem to contain the assumption that our only difference from non-disabled people is that we can do less than they can do, that if they do something badly then we could never even dream of doing it, and that anything we do happen to be good at is merely a “compensation” for lacking something else.

When I was first diagnosed, I was described as having “idiot-savant tendencies” because I had abilities that in any non-autistic person would just be considered skills or intelligence. This is, to me, another manifestation of the same problem. We are “idiots”, therefore anything we’re even standard-level good at is “idiot-savant” or “splinter skills”, supposedly out of the ordinary for people like us. I have seen similar things happen to people labeled with mental retardation, whose intelligence or other abilities are usually written off as meaningless or non-existent because they’re non-standard or displayed in non-standard ways.

So, yes, people insisting that their inability to do something proves our inability to do the same thing, might want to take note: Just because most non-autistic people can’t do something, doesn’t mean autistic people can’t do it. You might type something like “Edkd yd rsdu,” but we might type “This is easy.”

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?

Once upon a time, there was a Usenet troll (at least, back then he was considered a troll — lately many have been wishing for one as straightforward as this guy) who also happened to be (or claimed to be) the father of an autistic man. He used to stir up heated debates by accusing parents of abusing their children for not following his peculiar theory of the origin of autism. He was thrown off many autism lists for his nasty behavior.

He (or his son) also invented the term crypto-sensitivity syndrome and all the associated characteristics (“crypto-sensitivity” meaning something like “hidden sensory sensitivities”), which he claimed would replace “high-functioning autism,” “PDD-NOS,” and “Asperger’s”. And then he spammed just about everywhere with that and with his barely-sensical nasty rants towards anyone and everyone. He specialized in calling everyone “twits” if they disagreed with him and saying that they were bad parents and/or just all-around bad people.

If you didn’t know this guy, you should probably be glad. But if you run across people who don’t know that this — and not some serious plan to revamp the DSM, or anything else like that — is behind that extremely long symptom list with the strange name, then you might want to point them at this blog entry.