I got treated fully and consistently like a real person throughout the entire conference I just went to last week [note: "conference" is not the same as "MIT", this was not at MIT], to a degree that I am still stunned about. But it was all done in a very natural way. There was just this background knowledge that people are people.

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.

The following is my response to the Autism Speaks/GRASP “articles of understanding”, put onto video.

Edit: And now that I know how, here’s a captioned version (sorry for the asynchrony of the captions, they were synchronized when I made the video and YouTube mangled them):

Here’s a transcript, since among other things I can barely edit a video (hence the very short length and lack of detailed writing, at least that’s one of the reasons) and don’t have the expertise or software to caption one. The video just basically shows me sitting on a couch as I play the recorded message on my speech synthesizer, and then at the end my cat decides to jump up and nuzzle me.

This is my response to the Autism Speaks articles of understanding with GRASP, the Global and Regional Asperger Syndrome Partnership.

I am a non-speaking autistic woman. While I do not agree with functioning labels, I have been labeled low-functioning in the not-too-distant past and am considered severely disabled. People who look at me without seeing me type often think that there is nobody inside me. I have many of the difficulties described in Alison Tepper Singer’s article about her daughter, and more that she did not describe.

It is wrong to say that your own child has no skills. It is wrong to go on a national video and say you have considered killing your autistic child. My parents faced worse hardships with less privilege and never once thought of killing me. It is wrong to condescendingly assume that autistic self-advocates have never heard of those of us labeled low-functioning, and that somehow the so-called low-functioning among us have no skills and need a cure, and that all you needed to do was say we exist and then everyone would understand what you want to do to us.

Our viewpoint was not represented in this “exchange of ideas” between GRASP and Autism Speaks. All the two of you have done is repeat caricatures: The autistic child happy in a world of her own versus the autistic child needing to be cured, high-functioning versus low-functioning, Asperger versus autism, able versus incapable. You have equated differences in the way we function with differences in the amount of rights we deserve. These things are not how we live, and you have avoided the substantial issues, including the fact that it is not only those labeled high-functioning who oppose cure.

Your articles promote misunderstanding, not understanding. Both of you have essentially told the world that I and others like me do not exist. I am here to tell you and the rest of the world that we do.

My mother wrote to me a few weeks ago to make sure I knew that she had never, ever, once, thought of killing me.

It was one of those surreal moments where I sat there and thought, “If I were non-autistic, non-disabled, I doubt she’d have felt the need to reassure me of something that should have been a given. And I think a non-disabled person would have been puzzled to get such a message out of the blue. I wish I was more puzzled as to why.”

And I quickly reassured her that I knew that, and had never even considered the possibility that she wanted me dead. She’s my mother. Most mothers don’t want to kill their daughters. I cannot imagine her, or my father, wanting to kill me. This is not something that enters my thoughts.

Yes, our family had a number of very rocky years for a whole lot of reasons that I won’t get into for the privacy of everyone involved, especially since all of us by now have turned over a new leaf in our various ways. And not all of those reasons even had to do with the makeup of our family, they had to do with circumstances. But killing each other? Not even close.

Certainly, my parents were not entirely up to dealing with what society had in store for a child like me. It’s not like parents get instruction manuals for “What happens when you have a child that psychiatry wants to lock up and throw away the key.” But they fought for what they believed was right at the time, with what knowledge was available to them.

They did this even when there were threats of taking me away from them and making me a ward of the state, and even when a particular institution decided to blame my mother for my so-called “childhood schizophrenia”. (This is what they called it when my parents tried to point out I’d been autistic pretty much forever — at the time, my proctologist was the only person who would openly state the truth, possibly because he found a bunch of professionals’ heads up my ass during that exam.) This time period did not make for particularly happy times for any of us, financially or emotionally, but a few staff were the only people who ever wanted me dead for it.

And yet I’m still occasionally getting emails meant to reassure me that I’m actually wanted in the world and that they never wanted me dead, never wanted me not to have been born.

What on earth kind of message makes parents believe they actually have to reassure their own children that really, seriously, they never even once considered killing us, and that really, seriously, we were wanted?

I can only guess it’s some toxic mix of the constant stream of murders and the messages that the press and various autism charities send out about the supposed frequency and normalcy of such thoughts. This isn’t support. Anything that makes my parents, and doubtless others, question such fundamental things about their relationship to their own children, and seriously believe I might think they’d had these thoughts, is not in any way support.

And, to my parents if they end up reading this: Really, seriously, I’ve never thought that you would have wanted to kill me. That just doesn’t cross my mind when I think about you. I’m aware that you love me. Thank you for reassuring me, but please be aware that you didn’t, and don’t, have to. Nobody and nothing should ever have made you feel like you had to reassure me of those particular things. Nobody should have put you in this position.

Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work.

That’s from an Alternet article that still seems to view doing the above as a good thing. The article even justifies and glorifies the quote in that video from the woman who considered killing her child. Apparently it’s “brave” to say something like that, and that makes it okay. (I don’t think so.) Apparently, also, nearly all parents of autistic kids have fantasized about killing us at one point or another and would know that if they looked hard enough. I’m not even going to dignify that last idea with a response.

But aside from the cultural shift towards basically “the courage of emotional honesty” being enough in what’s obviously a propaganda piece, read that paragraph I quoted from the article. They artificially made themselves and their houses look more unkempt than they were, and they kept the supports they normally use out of the way in order to get footage of autistic people — who were forced into this situation by the people making the film, mind you, which is beyond exploitative — doing things that made people feel sorry for the parents.

This was, as expected, not really a “slice of everyday life” from these parents’ lives, but a deliberately engineered take on the worst they could make things look. Why aren’t more people complaining?

Just imagine being an autistic kid and having your parents screw up your routine and make themselves look worse off than they are in order to talk about how miserable your presence in their lives is and how one of them has even thought of killing you. So that this can be shown to an entire nation. Yeah, doesn’t sound good to me either.

Conuly watched the Autism Speaks video, and posted a detailed reaction to it called In Which I Watch the Video.  This is my very short post in which I say that I liked reading her reaction.

“If you’re watching it, you’re part of it. If you’re close enough to see it, you’re in it. There’s no line drawn dividing the two.” —Tony Carey, in a spoken-word introduction to the last song of his most recent album, which is the first in a three-part series about learning from history

He is responding to the widespread belief that there are those who do things, and those who observe, and that those who observe, are separate, and apart, and not participants. He is saying this is an illusion, that everyone is a participant, and that seeming failure to act is — whether correct in that situation or not — an action in itself, with repercussions, for better or for worse, on everyone else involved. Not a non-action.

Zilari blogged recently that blogging in public entails a certain amount of responsibility. It is not an expression coming from nowhere, sent off into nowhere, but something that is read, affecting the thoughts and actions of other people to greater and lesser extents. The Autistic Bitch from Hell concurred. And I concurred privately, although it took me awhile to organize my thoughts into these words for this post.

There’s a sense in which inaction is perceived as background, not foreground. I’ve always thought that in those tests where they see how much a person looks at the background and how much at the foreground of pictures, I would look a lot at the background. There’s a lot of detail in there that people miss, a lot of things that are at least as significant as what people are trying to draw your attention to, that influence and are influenced by the foreground.

My ability to see the background gives me certain social skills that not everyone has. While people are busy trying to deceive me through facial expressions and hand gestures that they imagine are the focus of my attention, I have often caught subtle variations in movement, rhythm, and smell that they are not controlling and that may not even be on their faces or hands. In some cases I have missed the deceptive expression entirely and gone straight to what they were trying to hide.

Not that I am perfect at this, I am not a magician, just someone with an unusual social skill, although it is not as unusual as many would think among autistics. It’s not tested for because most people wouldn’t even think to test for it, and some of the tests of reading people explicitly confound it by restricting the range of correct answers, the aspects of other people that are supposed to be read, and the role of deliberate conscious effort in warping perception.

I believe this attention to only certain aspects of a person as “foreground” also account for the fact that I’m regarded as unreadable and potentially empty — or else read completely backwards — by a large number of people, but yet there are many people who can read several accurate levels of meaning in my so-called “background” aspects. It is not that I am inherently mysterious as a personal quality, but that people don’t know what to look for.

“Background” is often seen as some combination of taken for granted, static, passive, imperceptible, uninfluential, uninfluenced, devoid of accountability, empty, neutral, and non-existent. Since it is usually the opposite, and since everyone has something that they perceive as in this category without being aware of it, this is one thing that makes it so interesting and important. And overlooked.

If we do not perceive it, it is not there. If we do not perceive the origins, there are none. If we do not perceive the effects, there are none. That is how people tend to think.

When people wanted me to look at a very specific foreground on Autism Every Day, I spent most of my time exploring the “background”.

The questions that they wanted me to ask, and answer, were about the feelings of the mothers in the film, one or two specific things they viewed as causes of those feelings, and one or two specific things they wanted me as the viewer to do as a consequence of those feelings.

Instead, I looked at things like, what were the children, non-autistic and autistic, feeling and experiencing? What size, shape, color, and style were the rooms, houses, yards, schools, parks, clothing, and cars? What aspects of their personal and cultural backgrounds really caused those mothers’ emotions to be as they were? Who would be harmed by this particular usage of those emotional reactions as propaganda? Who was left out of or sidelined by this portrayal of things? Where were the fathers? What was everyone like when they weren’t on camera? What were the real consequences of this video for autistic people? What were the subtle reactions, and non-reactions, of the people in the video? Who looked the most oblivious, the auties or the non-auties? What was left out? What could I tell from what they chose to leave in, how they chose to edit it? What, off of the video, was the status and affiliations of the mothers in the video? What would happen if some of the mothers stopped spending oodles of money on probably-unuseful therapy and oodles of energy grieving and freaking out, and used that money and energy elsewhere? What caused the mothers to view their children as unresponsive when the children were clearly responding to their environment in a great deal of ways constantly?

And so on and so forth.

In other words, I was looking at everything I wasn’t “supposed” to look at and then some. I was not doing this entirely on purpose. I was doing this because this is what I do, the same way I can’t really help looking at the so-called “background” of people’s movements rather than the “foreground” image they are projecting.

Once, I was watching a Getting the Word Out video with a non-autistic person present. I grumbled a bit about it and the person said, “But what if she really feels that way?” She was very agitated that I would question someone’s “feelings”.

The Getting the Word Out video was of course a very carefully crafted piece of propaganda, which Kathleen Seidel dismantles beautifully in her blog post about it. It was not a person’s random expression of their feelings.

But even if it was her feelings.

So?

It is many people’s honest feelings that women are inferior to men, that Jews or Muslims are inferior to Christians, that people of color are inferior to white people, and so forth. Some people will even go so far as to advocate killing people for being in any of those categories, or to have considered killing people for being in any of those categories. Some societies sanction such killing, either explicitly or tacitly.

The “feelings” that people have, do not spring out of nowhere, of course. They are learned, through countless little “background” attitudes that are not questioned. They are reinforced through several well-known cognitive loops, and through subtle and not-so-subtle propaganda (it is the nature of propaganda, like the Autism Speaks video, to be persuasive).

The “feelings” that people “express”, do not go nowhere, any more than they come from nowhere. They affect people, they affect other people’s attitudes, they may reinforce or contradict attitudes in the dominant culture. When they reinforce attitudes in the dominant culture, and the “feelings” stem from highly destructive attitudes to begin with, these are not innocent expressions of feelings. Particularly not when expressed in a method meant to be viewed or read by a national or international audience. Publishing is public, it is different from having feelings in private.

When someone publicly expresses a desire to kill someone based on a particular characteristic, uncritically, in a culture where the lives of that kind of person are already devalued, the technical term for this is hate speech. Hate speech is kind of like slander or libel, only instead of smearing the perception of the character of one person, it smears the perception of the value and worth of the lives of thousands or millions of people.

“What if a person really feels that way?” Well, then they feel that way. And? As I said before, feelings don’t come from nowhere, and they do not affect only the person having them. They do not go to nowhere either, when expressed. There is a cultural trend at the moment that says that everyone has the right to express any feeling anywhere. Rights usually go with responsibilities. If you publicly express the “feeling” of wanting to kill someone, you have a responsibility to express it in a way that won’t make it sound remotely okay, and that goes double or triple if the person you want to kill is part of an already-devalued group. Your “right” to express your despair or self-pity whenever and wherever and in whatever manner you feel like, does not trump other people’s right to be safe (which, regardless of group-therapy trends, is not the equivalent of “feeling emotionally safe”) and alive.

Nobody who is aware of something is truly a bystander. We are all part of the culture that currently contributes and responds to the devaluation of the very lives of disabled people, including autistic people. How we respond, especially publicly, to the notion of some kinds of people being more disposable than others, some murders of innocent people being more understandable than others, has a part in shaping these attitudes. Reinforcing them, or fighting them. Every one of us is part of this, whether we know it or not, whether we feel like it or not, and whether we want it or not. It’s not optional.

When someone publicly states, “I understand the despair that drove the mother to feel that way,” they have a responsibility not to simply leave it at that. There is a difference between despair and homicide. There is an enormous difference between despair, and wanting to kill one child with a devalued characteristic but staying alive only because you have another child without that characteristic. One less-worthy child, one worthy child. If you don’t point this or something like it out when you publicly identify with that mother’s “despair,” then you are effectively strengthening her voice. If you don’t heavily weight things so that your identification with that despair is drowned out by the wrongness of the act, then you are effectively strengthening her voice. It’s not enough to add a tiny sentence saying “But it was wrong,” in the midst of a flood of opposite sentences. It’s the overall tone that people will remember.

Identification with people’s feelings is a powerful thing. When you identify with certain feelings, you are less likely to view anything done by someone with those feelings as wrong. Your identification with those feelings might cause you to add your voice to the “expression” of those feelings without adding your voice to the condemnation of some of the ways those feelings are “expressed”. Your identification with those feelings might leave you more susceptible than average to clever, calculated propaganda that plays on those feelings. Your identification with those feelings might even make you hostile to anyone who says there are wrong ways and times of expressing those feelings. I don’t know how many people have claimed that I hate parents or attack parents, merely because I don’t think it is ever okay for someone to publicly, without heavy qualification, say things like “I’ve wanted to kill my child because of who she is.”

I should note, by the way, that for many of us, mere expression of the intent to kill someone “valuable” is enough for involuntary commitment as a “danger to others”. In one case, a man in South Africa was jailed for eight years merely for planning the murder of his son. I am not advocating involuntary commitment, but there is an enormous disparity when people can say these things for national or international audiences without someone at least calling Child Protective Services.

It should be noted that public dehumanization of this nature is considered the third stage of a potential genocide. “Dehumanization overcomes the normal human revulsion against murder.” -Gregory H. Stanton.

We have a responsibility to combat that dehumanization wherever possible, and that responsibility overrides any individual “right” to express one’s “feelings” all over the place. It also interests me that so many people who have had these “feelings” are so hurt by the concept that they shouldn’t “express” them everywhere, view themselves almost as being oppressed by the notion that they shouldn’t.

To anyone who feels that way, take a serious look around you. Look at how often “feelings” like yours are “expressed” right and left, with near-total impunity, while people who say “Hey, murder is wrong” are more likely in these instances to be castigated for disagreeing with these “feelings”. Look at how often the murder of a disabled person is considered okay, and the murder of a non-disabled person is not. Look at how safe non-disabled people are in these circumstances, even at times from punishment for murder, and how totally unsafe disabled people are, even from murder. And then come back and try to look all “oppressed” for us again. A lot of us won’t buy it, although I’m sure the majority of the surrounding culture will, and will give you all the sympathy and pity you ever asked for, while condemning those of us who speak out against it as trampling on your ever-important feelings. Between our lives and your feelings, I know which I’d choose.

“Did she just say what I think she said? On national television?”

My staff nodded grimly.

I was at her house, watching The Mayor of the West Side, a movie about Mark Puddington, a teen with Cornelia de Lange syndrome, and his entangled and disturbing family dynamics.

His mother was overprotective, believed she was the only person in the world who cared about him, couldn’t imagine him living without her, frequently prevented others from helping him become independent of her, and had just announced to the world that she still thinks that maybe she’d have to “take him with her” when she dies rather than allowing him to live without her.

In other words, she’d announced intent to possibly kill her son in the future. Throughout the rest of the movie, she never retracted her statement, and nobody seemed to be saying anything to her about it. I saw no involvement of Child or Adult Protective Services, nothing. I still worry about her son.

There’s love between them, but on her side of the relationship there’s something else that’s more disturbing than plain old ordinary parental love. There’s the mentality shared by animal hoarders, who believe nobody could care better for animals than they could, nobody could love animals like they do, and who consequently have too many animals to take care of, so the animals start dying. Some collectors go on to keep the corpses of the animals around, either preserved or rotting.

I am not saying that “disabled people are like non-human animals,” there. That is not my intent. What I mean is that there’s a kind of attachment that goes beyond love into a complete detachment from reality where the object of said love is concerned, whether that object is disabled, non-disabled, human, non-human, etc. I saw that kind of reality-warped attachment so strongly in the mother in that video that I still fear for her son’s safety.

In 1983, Adam Benjamin Clark was murdered. (Corrected to say: His mother’s boyfriend was convicted of the murder, not his mother. See comments for more on this.) His older sister Amber has a memorial page called Remembering Adam, which includes her account of what happened, newspaper accounts, and their father’s photo essay. I have to warn you that I’ve never been able to read it without crying.

Adam Clark’s mother tried to blame her son’s death on Cornelia de Lange Syndrome making his body fall apart. (Cornelia de Lange Syndrome, even when aspects of it become fatal, does not cause the kind of injuries Adam Clark had. The potentially fatal aspects usually have to do with internal organs like the heart or digestive system not functioning properly. Adam Clark died of crush injuries.)

I’d known about Adam Clark since long before I’d seen The Mayor of the West Side. That was one of the things that made the mother’s statement so horrifying. I knew that this sort of thing was something that really happened, and that happens to disabled people more often and with more impunity than it happens to non-disabled people. I knew that for many people, the mother on the screen would have words that went unquestioned: “It’s just her feelings. Harmless. At least she talks about them.” And I would know that were her son not disabled or some other devalued category of person, nearly everyone would question her words. She did say this. On national television. And who besides me commented? Did anyone notice?

“She’s saying it for an international audience.” This time I was not so shocked. I was watching Autism Every Day. And by now anyone who’s read the Autism Hub blogs for long knows what was said. Again, no sign of Child Protective Services.

CdLS can cause a person to be autistic, and usually has definite visible physical signs. Nobody thinks of people being cured by it, except by the usual eugenic elimination procedures. Some forms of it can kill though. Like the Rett community that Autism Diva describes in the post I just linked, the CdLS community mostly focuses on their love for their beautiful children and on how to identify them, teach them, and keep them healthy and happy. The disturbing stuff is still out there, as I mentioned above, but it is not as dominant as in the autism community. Parents of autistic children without identifiable things like CdLS or Rett’s, still hold out hope of a cure and hold massive pity-parties for their children’s mere existence, even though most of their children are not facing the potentially life-threatening consequences that children with CdLS or Rett’s are. Although some of their children do undoubtedly have things like CdLS or Rett’s that is undiagnosed, and like Autism Diva I wonder how they would have to change their approach if they found that out.

At any rate, Allison Tepper Singer also described, in a high-profile video distributed internationally, wanting to kill her daughter for being autistic, but only stopping herself because her other daughter was non-autistic. If anything ever happens to her non-autistic daughter, I fear for the autistic daughter’s safety just as I fear for Mark Puddington’s.

On May 13, just before Mother’s Day this year, three-year-old Katherine McCarron’s mother murdered her by putting a plastic bag over her head and suffocating her, for being autistic. Instead of people writing to the newspapers and the district attorney to say that autistic children need to be protected from this, most people I’ve seen have been writing to the newspapers and the district attorney have been writing to support the mother.

On May 14, Mother’s Day, in Albany, Oregon, 19-year-old Christopher DeGroot’s parents locked him inside their apartment and then set the apartment on fire. He died in the hospital. He, also, was autistic. Someone on a closed mailing list I am on, said basically, “Expect more sympathy for the two cats who survived the fire than the autistic man who didn’t.”

These are two people who will never, ever experience life on this earth, or any feelings, good or bad, again. They are gone. Everything they were or could have been has either vanished or been sent to the afterlife, but it is not here right now. These are two human beings who have been murdered. That these facts are going to be shoved into the background, to focus on the feelings of the murderers as foreground, is appalling.

The majority of support, anywhere, is going to go to the “feelings” of their murderers. I have a friend who runs the Murder of Autistics webpage, and he gets angry letters from the families of the murdered autistic people, not angry because they were murdered, but angry because he steps on the families’ “feelings” by portraying it as just as horrible as the murder of anyone else. How about showing some support for the feelings and lives that Katherine McCarron, Christopher DeGroot, and Adam Clark, will never have? Our reactions are not merely those of uninfluential, uninfluenced bystanders, we are people within a society, and our action, or inaction, will affect a lot of people. I know what my reaction will be: To bring the “background” that these people’s lives and futures have appallingly become, into the foreground of the discussion. These are innocent people, some murdered, some always in danger of murder, and the not-so-innocent are the ones most people are going to want to sympathize with here.

I just watch the horrible public service announcement by Autism Speaks. (I wonder how that girl likes having her mother announce to the entire world that she’s thought of killing her, if you’re wondering why I called it “horrible”.)

One thing that struck me was that the children in the video were described as unresponsive, over and over again. And yet the children were responding to their parents and to their environments in general, and they were doing so in incredibly clear ways.

However, by the way the parents were acting, it might as well not have been happening. They went right on doing whatever it was they had been doing, as if the children were not communicating anything. The body language of the parents did not change in the slightest in response to their children, it stayed constant, and very very socially smooth.

Then, in order to get their children to “respond” to them (as if the children had not been responding already), they’d do things like try to force eye contact. As if eye contact is “connection” and “response”. There was also some grabbing and moving them around, as if they were objects, but without any responsiveness to the reactions of the children. I even saw children being driven into overload and then parents sitting there looking “sad” that their children did all these “behaviors”.

Where is this fabled unresponsiveness?

I see a lot of unresponsive non-autistic people in that video, I see people being, in fact, unresponsive in ways that would strike me as outright cruelty if I thought they knew better. (I don’t think most of them know better.)

But where is this unresponsiveness supposedly existing in the autistic people in the video?

Is it because their faces are not pointed the “correct” direction? (Do you have to be looking at someone to know they are there?)

Is it because they are not talking? (Do you have to talk to respond to people?)

Is it because they are flapping their hands and stuff? (Do you have to move a certain way to respond to people?)

I don’t understand it at all. I look at those children and I see overwhelming, repetitive responsiveness in the face of being totally ignored and shut out.

I’m remembering a time recently when I was trying to find something out from someone, and no matter how many times I tried to find it out, she gave me the same useless piece of information. (Which amounted to, “Just do what you’re told,” which was not what or why I was asking.) When I started banging my head, she started yelling, “Listen to me! Listen to me!”

And the whole time I was thinking, “I am listening to you, why the hell do you think I’m overloaded, lady? Now stop screaming at me or I won’t be able to quit hearing you long enough to stop this.” But she was utterly convinced that I was not listening, and tried numerous ways of getting in my face to ensure that I was listening, all of which ensured I had no possibility of either communicating or understanding.

Then someone walked through and asked how I was doing. I hissed — like a cat, and one of my more unmistakable sounds — and the person I’d been talking to went into patronizing-cheery mode and said “Oh, she’s doing greeeat.” Like I wasn’t even there, and hadn’t just said something, and hadn’t been banging my head moments before.

The sheer amount of people who look at me and view me as “unresponsive” when I’m very responsive, is impressive. And the things they do when they view me as unresponsive, seem a lot more like unresponsiveness than anything I do to them.

It’s like they only see a tiny, tiny number of the possible human responses as “response”. When those responses are present, even if totally fake and out of context and plastered-on to someone who’s really not all that responsive to someone, they view it as “responsiveness”. When those responses are not present, even if every other possible signal of response is happening, they view that as “unresponsiveness”. And they call us oblivious?