Autism Demonized

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Lisa Helt writes, in an Amazon review of Strange Son:

I can’t believe anyone could write such cruel things about any human being, much less a child with a disability. She uses the words, “beast-like”, “alien”, “possessed by a demon”, “like a wild beast”. Only someone who has no compassion whatsoever could write this, much less be the founder of Cure Autism Now. I know one thing, they will never ever get my money again.

Portia Iverson tries to say she never wrote that, and Lisa Helt points out the passages, saying at the end:

To me it seemed you were embarrassed by autism, embarrassed that they ruin your dinner parties that were so painfully planned with their “French country patterned napkins”. I hope that one day you can accept Dov and the other children for who they are.

Someone else claimed that Portia Iverson’s description was probably just “honest”. (So apparently it’s okay to degrade autistic people as long as you’re being honest when you do it. I wonder if that applies to people besides autistic people.)

Tito Mukhopadhyay, who has elsewhere referred to the book as a slap in the face, replied to the “honesty” description as follows:

Honest from the author’s perspective. Perception is a tricky business. But some honesty hurts and Mutilates the trust forever.

I am sorry to ruin her party.

May she have many-many happy parties for ever more.

Till then, let me be that Mutilated Spirit….

And writes several poems on the topic.

Someone sent me a used copy of Portia Iversen’s Strange Son on CD. I only just got through the first track, and this is what I heard:

It was his mind they came for. They came to steal his mind. Before anyone gave it a name, even before I knew what it was, I knew it was in our house. I can’t say exactly how I knew, except that I could feel it. Not that I wanted to, believe me. They were very very dark things and there was no way to get rid of them. Sometimes I could hear them late at night when the house was very quiet. A creaking sound, an inexplicable hiss, a miniscule pop, a whistle out of nowhere. And when I closed my eyes, I felt their shadows passing over me as they floated through the house and drifted invisibly with the smoke of the fireplace chimney out into space back to God knows where. I didn’t like to think about where they came from or where they were going. It was too frightening. Dov was only a baby and something was trying to steal him away. Sooner or later I knew I would catch them swirling above his crib. I knew that was what they did whenever I accidentally fell asleep. A violent thudding jolted my senses awake. My heart was banging like two fists in my chest. How long had I been sleeping? My eyes darted over to the crib I was supposed to be watching. He was still there. I could see him through the white wooden bars, asleep, his small body gently rising and falling with each little breath. Night after night I sat beside his crib. I knew he was slipping away from us, away from our world, and there was nothing I could do to stop it from happening. There was nothing anybody could do, they told me. So I did the only thing I could. I guarded him, although I knew it would do no good. Because I could not guard his mind. And then one day it had happened. He was gone.

This sounds like a horror story, or a tale of changelings, which dehumanized disabled children before the idea of refrigerator mothers was even around to dehumanize our parents. Iversen’s group, Cure Autism Now, has shamelessly exploited this mythology in order to sensationalize autism. We aren’t there. We’re “gone”. Our minds have been stolen, by dark, evil spirits that roam around looking for children to snatch up. The above description isn’t the story of a child dying slowly of a disease, even. It’s a story of a child being autistic.

Does anyone remember Bridget Cleary or the others killed as changelings? It is irresponsible to sensationalize autistic people as being “gone” and “stolen” by dark forces, in a time when our murders so often get seen as not killing real people.

Autism Network International has a newsletter, Our Voice (now Our Voices) that has a policy that you can reprint from it as long as you give full credit to ANI, Our Voice, and the authors. The following is a poem by Jim Sinclair that was printed in Our Voice many years ago. It is called “Changeling Lullaby,” and it’s written from the perspective of an autistic person who is on the receiving end of a dehumanizing kind of… pseudo-love.

Echoes from a shadow world:

        You’re mine
        I love you

Shards of someone’s shattered dreams:

        Come here
        I need you

Voices calling in the darkness

        I will never let you go

To someone who was never there:

        I will make you look at me

Raging fire, desperate hunger:

        I couldn’t bear to set you free

From a past that never was:

        Once I held you in my arms

To a future long forgotten:

        When will you come back to me?

All that your love says to me:

        My dreams died when you came to be.

A quote from a Washington Post book review called An Extreme Aloneness:

Because Moore knows, twice as well as I do, that precisely because autistic kids don’t much notice or care about the outside world, autism actually “happens” to the sentient human beings around them. The heartbreak, the drastic realignment of expectations, the fury, the terror — even the fleeting moments of elation or amusement or solidarity in the face of insurmountable weirdness — happen to the parents and the siblings.

So, according to this, autistic people don’t actually experience being autistic. Our experience is not only irrelevant, it isn’t there, at all. We aren’t sentient human beings, only those around us are. We don’t experience the bad things that happen to us, only those around us do. We’re, I’m guessing, empty shells or something?

Now I’m going to look at The Siege, by Clara Claiborne Park. This is the book that Catherine Maurice found inspiration for battle metaphors in. It’s another classic in autism literature by parents, and was originally written in 1967. The version I have here is a 1982 version with a newer epilogue.

The first chapter of the book is called “The Changeling”. From page 5:

Once a friend, seeing for the first time her pale skin and straight yellow hair, her clear blue eyes and the dancing grace of her body, called her a fairy child. And there was a fairy lightness in her movements, a fairy purity in her detached gaze. As time passed and she grew taller, leaner, older, her face seemed not to record time’s passage. She carried none of the stigmata of the defective; nothing distinguished her from other children except that in some undefinable way she looked younger. The Irish name for fairyland is the Land of Youth. There live the Good People, who bear the human shape without the burden of the human heart. There is no malice in the Good People; they do not will the pain they cause to others. If they seem cruel, it is not real cruelty — only a certain remoteness, an inability to comprehend our desires, our needs, and our warmth. It is because the fairies have no hearts that they do not grow old. Elly’s eerie imperviousness, her serene self-sufficency, belonged to those who, like the fairies, can live somehow untouched by the human experience.

This at first glance looks more positive than a lot of other things can look, at least among people unfamiliar with the real nature and purpose of those particular fairy stories, and unfamiliar with the non-Disney version of the fairies she’s describing. But what she’s describing is an autistic person as heartless, and as, yet again, not really part of the real human experience. Real humans, after all, are apparently not autistic.

Page 12:

The fairies had stolen away the human baby and left one of their own. There she moved, every day, among us but not of us, acquiescent when we approached, untouched when we retreated, serene, detached, in perfect equilibrium. Existing among us, she had her being elsewhere.

That’s a basic repetition of one variant of the changeling myth, and a whole lot of reading mental states into her body language that probably aren’t there.

If smiles and laughter mean happiness, she was happy inside the invisible walls that surrounded her. She dwelt in a solitary citadel, compelling and self-made, complete and valid. Yet we could not leave her there. We must intrude, attack, invade, not because she was unhappy inside it, for she was not, but because the equilibrium she had found, perfect as it was, denied the possibility of growth.

So here is the concept of her being imprisoned behind invisible walls that must somehow be breached. This way of looking at autistic people seems tailor-made for people wanting to act out rescue fantasies, including fairly violent ones, and is where Catherine Maurice got some of her imagery.

This imagery also denies the fact that any walls between autistic and non-autistic people are made by the intersection of both sides, not some mysterious force that pops up around autistic people and creates walls. They are as much created by a failure to understand autistic people as anything inside of us.

She also describes Elly as having found some mysterious equilibrium in which there was no possibility for growth. This resembles other ideas, the ones that say that autistic people simply do not grow or learn without someone pushing the therapy-of-the-day in our faces. When, really, we do learn and grow as much as any other kind of person does, but in a very different manner. This also gets back to her notion that because her child looks younger than her age, that she must be suspended in time somehow.

Confronted with a tiny child’s refusal of life, all existential hesitations evaporade. We had no choice. We would use every strategem we could invent to assail her fortress, to beguile, entice, seduce her into the human condition.

It’s interesting how close to the quote in Let Me Hear Your Voice that one is, close enough that I am pretty sure Catherine Maurice derived her much more violent imagery from these sentences.

Here, she is painted as refusing life, as if life, again, is life the way non-autistic people live life, and no other kind of life exists. She’s also apparently, again, outside of the human condition, when from an autistic perspective she’s very much inside of it.

Page 38:

I looked at Elly, busy doing nothing. Part of us is still a child, and thinks the universe should be fair. What had gone wrong? If Elly could not have that boy [with leukemia]’s sharp mind and bright spirit, could he not at least have the health she had no use for — health in which for the first time I felt not pride but shame?

Apparently autistic people have no use for being healthy and not having fatal diseases?

Page 93:

One curious fact helped us as we worked. We saw it happen more than once [...] some big, loud, friendly daddy of a man, passing through town, would visit us, take a look at our pretty baby, and knowing nothing about her to make him wary, would sweep her off the floor, hug and tickle and toss her while she squealed and chuckled with the most ordinary baby delight. During one such visit I watched, incredulous, as Elly — impervious Elly — got up off the floor, went over to the stranger, and crawled onto his lap. A year and a half later, at the time of her second hospital examination, we remembered his magic and took Elly to visit. But he had lost it. He knew now that something was wrong with her and he treated her as any intelligent and sensitive person would — delicately, tentatively, cautiously. Elly never even saw him.

This, to me, indicates not that she did not see the man the second time around, but that she saw him very well and was acutely aware of what many autistic people learn early — the difference between respect and tiptoed condescension. I’m including that quote as an instance of how dehumanizing assumptions about us can prevent a person from understanding why we are reacting the way we do. Unfortunately, this is lost on the author, who only takes this information as more useful information for how to mount her “siege”.

Page 117:

Elly benefited immeasurably from the variety [her babysitters] brought into her constricted and empty world.

There’s this assumption again that Elly lives in a different world than the rest of the world, and that this world is empty. Later the author describes Elly “as she entered the world by slow degrees”, meaning that she was not a part of the world before?

Page 120:

And we need not pretend that for the children either we succeeded in making every rough place smooth [...] One of the children cried out, with tearing intensity, “We ought to send her away! She ought to be in an institution!” The words came from the gentlest of the three — the one who never seemed to ask for anything for herself.

No such words had ever been spoken before. There was little to answer, and yet one had to say something. I said the obvious — that we all felt that way sometimes and that it would always be something we could do but that now after we’d all worked so hard and she’d begun to love us a little we could imagine what it would be like to visit her in an institution and to find she’d forgotten it all and didn’t even recognize us.

This is a more subtle kind of dehumanization than the kinds I’ve been dealing with. This is one in which it is considered okay, normal, even expected, to consider putting a particular kind of family member in a horrible, segregated, deprived environment because of the kind of person they are. And to sit there and discuss this in front of the person, who might well understand what was being said. Allowing children to live with the threat of institutionalization over their head, in fact encouraging your other children to view this as normal, is not acceptable. Imagine hearing your sister say you ought to be in an institution, and instead of rebuking her, your mother says, “We all feel that way sometimes, and it’s a real option for us.”

Let Me Hear Your Voice, by Catherine Maurice, is considered a classic in narratives by parents of autistic children.

Page 57:

I was in a race against time, and either I found someone or something that truly helped or I had lost Anne-Marie forever. It was as simple as that. There is something about autism that to me gave meaning to the phrase “death in life.” Autism is an impossible condition of being there and not being there; a person without a self; a life without a soul

This is more of what’s becoming almost standard in the entries on this blog. Autism as death. Autism as soullessness. Autism as being lost.

Later on, Maurice describes her daughter in the following way on page 63:

Anne-Marie was so far gone by this point that she spent the evaluation period curled on the floor in a fetal position, refusing to open her eyes.

I am not sure what “far gone” is meant to represent, but I have spent evaluation periods immobile before, and I was definitely in the room.

She later says, on page 72:

I felt the same resigned acceptance toward [the length and intensiveness of ABA for Anne-Marie] that I would have felt if a surgeon had told me he had to carve open my child’s body to correct a valve in the heart. Would I want my child to be physically assaulted like that? Would I like the thought of giving her over to strangers with knives? Did I think she would enjoy the experience of being strapped to a table and drugged to oblivion? Hardly. But if that operation was going to save her life, there would be no question in my mind.

This is a good example of comparing autism to a deadly medical condition. It allows you to distance yourself from the fact that you are inflicting something possibly quite nasty on a child that you love. This is a good thing when the condition is actually deadly, but autism, despite frequently hyperbole, hardly qualifies as in the same league as a severe heart condition warranting surgery.

She later reads the book The Siege, by Clara Claiborne Park, another classic in parental autism accounts. That book gives her an idea of how to view her daughter (page 80):

From the beginning, my idea of a “siege” meant something more forceful and invasive than the kind of respectful, patient waiting portrayed in that scene. Nevertheless, it was in Mrs. Park’s book that I first found the germinal concept for my part in the battle. As I read on that night, two concepts fairly burst into my consciousness: the notion of Anne-Marie as being “walled in,” and the idea of assaulting those ramparts. Besieging Anne-Marie, not so much in the sense of waiting and wooing, beguiling and beckoning, but in the far more violent sense of storming the walls.

This is interesting, because she’s gotten a particular stereotype of an autistic child, from another parent, and is now applying that stereotype, and rather violent imagery, to her child.

Page 81:

…[a poem] galvanized me to begin what was to become an assault on my daughter, an assault of love, with no holds barred.

I did not learn how to wait; I learned how to stalk and hunt, how to overpower.

[...] The violence of the imagery — the battering, the bending, the burning, the overthrowing, the final ravishing — was frightening. But no more so to mean than autism.

I had felt from the beginning that something was “taking over” my daughter [...]

There was a part of her that was still a lost and frightened baby girl, and if I had to batter her down, bend, break, and ravish her autistic self in order to get to that Anne-Marie spirit, I would do so.

She was “to another due,” and unless we tore her out of the otherness of autism, she would never be free.

That very evening, I wrote some statements in my journal, the first draft of a battle plan.

“She will not sit in the corner. She will not play with strings. She will not not look at me. She will not be mute. She may want it. I will not have it. She will be dragged, kicking and screaming, into the human condition.”

So here, we have several things going on.

She is separating autism from her daughter in her mind. She is doing this so that she can justify what she herself terms an assault on her daughter. She is casting autism as the demon possessing her daughter, so that she can harm the demon without harming her daughter.

A personal note here: I have had people hit me and claim they were not hitting me but a demon that was possessing me. I can assure you that it hurts just as much no matter how they justify it. I have also seen people justify denying food or social contact to people on the basis that they were only feeding or socializing with “a disease”. I can also assure you that the people labeled as diseased were just as hungry or lonely, but the people abandoning them felt much better about themselves.

She later even admits that her view of all this is fictional, a rationalization to help her in this self-proclaimed battle against her daughter. But, she claims, it is worth it to dehumanize her daughter if that is what it takes to “battle autism” or somesuch.

Another thing she’s doing, is saying that what her daughter is doing is not part of the human condition. The human condition is apparently the non-autistic human condition, autistic humans are exempt from it, apparently. As an autistic person I have a really hard time understanding why someone not looking at someone, or playing with string, is supposed to mean they’re not human. If not looking at people is non-human, I wonder what these people think of blind people.

It is difficult for autistic people to be regarded as whole people with the same human rights accorded anyone else, amid this kind of rhetoric, and this kind of rhetoric is not only popular but transmitted between people in the autism community.

At any rate, there are several kinds of dehumanization all over this book, and those are a few of the most obvious examples.

From a thread called Are you neurotypical? awhile back:

Autism is a way of life, didn’t you know. Just like bulimia and anorexia.

What goin to be cool next? AIDS? Sickle cell anemia?

This isn’t actually the first time that I’ve heard autistic liberation compared to pro-anorexia. But the comparison is no more real for its repetitiveness. And then we get into AIDS, etc, like usual. Of course, this is from a forum on one of those sites that is deliberately offensive or something, but it’s certainly a common thing for people to say even outside that kind of site.

This is from a letter signed, Michael A. Chernoff, for Alexander, Houston, Texas.

…(but what price do you put on a child whose life has been destroyed by a known poison that was given to them?).

This is what I call, “American’s Silent Holocaust.” It has happened and continues to this day to happen, but there are selfish individuals and organizations that are more concerned about their reputations and money,then ever doing the “right thing.”

…

So I plead that every person that has a child, or grand-child, or knows someone they care for and love with this horrible disorder, become ANGRY…become so vocal to your congressional representative’s, find the right lawyers (because that’s how we fight for our rights in a democracy),make it a point to write your newspaper and do whatever you can to make this “Silent Holocaust” known. It will be the only way our autistic children will have a future.

If someone makes comparisons to a genocide, I expect something resembling a genocide. There are certainly many silent genocides going on in the world today, including of disabled people. Vaccinating the population against diseases, however, is not a genocidal act. The fact that lots of autistic people exist is not a genocide either, although we are certainly subject to genocide.

Comparing vaccination to the Holocaust is the sort of thing that I hope doesn’t need to be explained why it’s offensive.

Note also that families of autistic people are described as “afflicted” by this “horrible disorder”, and autistic people are described as having no future by default and having our lives destroyed. But that’s still not as bad as “silent Holocaust”, which has me “silently aghast” at the descriptors people will use. I am not the sort of person who says that Holocaust comparisons are always offensive, because they can be used accurately, since there are many genocides in the world, all of which have at least some elements in common with each other. But they are not the sort of things that should be randomly thrown around as an intensifier, and they certainly don’t apply to the existence of autistic people.

This one jypsy mentioned, part of a blurb for a book (or something, I can’t quite tell what it is) called Fear and Autism.

A spirit of autism has held them since childhood. An antichrist alcoholic occultic bind. What devastation it brings to a child to a marriage sometimes to all communication.

Well… that’s certainly fear of autism. I can’t say that I’ve ever heard autism called “antichrist” before. The quote stands on its own. (Most autistic Christians would disagree with the above sentiments, I suspect.)