Lesser of two evils.
Mar. 27th, 2010 10:26 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
amorphaApril is nigh. This will probably mean more posts from us, ranting about ableism, since we've come to understand a lot more about it in the past few years-- despite having been the victims of it, we still didn't even understand how it worked, much less that it was a form of discrimination and not something about us in specific.
April is, of course, "Autism Awareness Month." It used to be "Child Abuse Awareness Month." There's some kind of irony in how it got supplanted there, given some of the very abusive things that have been done and continue to be done to autistic children in the name of "treatment." It is always painful to see this time of year roll around and know that what glossy, slick, high-profile organizations like Autism Speaks mean, when they talk about "awareness," is actually "preventing people like yourself from existing in the future."
We don't talk a lot about our biological family online, for the most part. Anyone who knows us even vaguely well, knows that there's some troubled past there, though it's actually not so much that we consider it too horrible to ever speak of-- we have talked about much of it to people we trust a lot-- as that we consider it private. We also don't want to drag any other family member's past around in public without their permission.
The thing is, while our family was very far from perfect, and we've been shaped in many, many ways by the less ideal aspects of it, I am still finding myself oddly grateful this April that we were born decades before autism became big money, born before Asperger's syndrome became a diagnosis, born before "psychiatric screening" in public schools. Oddly grateful in some ways that our parents did too little for us, in terms of recognizing our disabilities, rather than too much, even if it was the lesser of two evils.
Whatever our "quirkiness" was thought to be, by others, when we were younger (and there was a whole lot of "quirkiness"), apparently it was a kind of quirkiness known enough on both sides of our family that no one thought we needed to be dragged to a doctor when we didn't meet certain "developmental milestones." The erring on the side of inaction wasn't always a good thing, as a few times we weren't taken to doctors for illnesses that could have become very serious, and we still have lasting aftereffects from some of those-- but it also led to us being able to enjoy certain types of freedom that many children growing up in today's climate of "autism awareness" are not being allowed to.
This post, She Will Never, sums up a lot of the reasons for our anger. If kids who-- according to their parents' and teachers' descriptions of them-- are doing just about the same things we were doing at the age of 3, or 6, or 12, or can even do things that we couldn't do at those ages, are being said to have a "poor prognosis" or "fair prognosis," or "no future," that they will "never live independently," "never make friends," "never have relationships," what would they have said about us? Kids who are exactly like we were, in many ways, described as having no future unless they receive "intensive intervention" and "intensive social skills training," training to make eye contact, training to have "normal conversations," to live in a world in which it is assumed there is no one else like themselves, that all their adjustment will have to be about them accomodating to "normal" society and not the other way around.
We were not given social skills training. We did not spend hours being drilled on how to make eye contact. We did not have to spend long, intense sessions being trained to "recognize non-verbal cues" and "identify emotions" on people's faces. It was assumed that if we did not have certain skills at a given time, it was because we were still a child and would learn them as we got older. Our abilities at the age of 3 were not taken to be representative of what our abilities would be for the rest of our life if we did not receive "intensive early intervention." Whatever else our parents might have done wrong, and there was quite a bit, they did not spend their time dissecting our day-to-day behavior in a cutesy, otherizing, patronizing way in blogs, chronicling every single meltdown, talking about it as a "wonderful accomplishment" if we were forced to stop stimming, pacing, etc.
Yes, we were punished, had perseverations taken away from us, if we were thought to be "too obsessed" or if something helpful to us was regarded as a "bad behavior", and I'm not defending those as good things. But no one ever scrutinized our behavior hyper-intensively and decided which things were "too autistic" and what things needed to be slowly and methodically punished or taken away in an attempt to match us up to some non-autistic "age-appropriate" ideal. Sometimes in school we were punished for stimming or flapping, or had people physically grab us and pin our hands down or hold them immobile, and I'm not saying that was a good thing, but it was still better than to have it obsessed over and treated as A Symptom that needed to be Extinguished through behaviorism. Some of the things that would be considered "too autistic" by most doctors, that are certainly considered so in most autism parent blogs and forums, were considered cute or charming by our family and even some teachers.
Nobody spent long hours poring over what our drawings of people "meant," whether the imaginative games we played indicated that we "had a concept of others' minds." When we preferred playing games about being inanimate objects to playing games about being humans, nobody ever said this was proof that we had a deficient "theory of mind," that we regarded people as objects. (It was actually the other way around, if anything-- we assumed that objects were the same as people in early childhood, treated them as though they were conscious and felt emotions.) Nobody ever thought that we lacked empathy or had no innate concept that other people had feelings and could be hurt. If we appeared to be ignoring others' feelings, to be indifferent when we'd hurt someone, this was treated as unkindness and bad behavior in the same way any other child's was, because no one assumed that we intrinsically lacked the capacity to understand others had feelings in the first place.
Nobody assumed that the highest goal we could ever hope to attain to would be to "blend in," to be "indistinguishable from our peers." They assumed that we had the same range of life ambitions available to us as other children of our age, physical sex, and economic and social group. When we said we wanted to be a writer, no one told us it was not possible for us to be one because of our neurology, because we were supposedly "imagination-impaired" and couldn't imagine others' thought processes. As it turned out, people actually overestimated our abilities in several areas (not imagination, but other things), and assumed we didn't have disabilities to the extent we did, sometimes to the point of denying we had any-- and while that certainly caused us problems of its own, our childhood experience would have been very different, and more unpleasant in many ways, if we were constantly being told that the goal of our life was to appear non-autistic.
I don't know what our life would have been like if all those things had happened. There's no way for us to look into a parallel universe where it did, or rewind the tape and play it back differently. We did end up being extremely self-conscious because of our mother's treatment of us and because of being targeted by bullies, we spent a lot of time beating ourselves up needlessly because we thought we were "lazy" and "wanted to fail" when we couldn't acknowledge our disabilities. No, it wasn't perfect, it was far from it, and it was the lesser of two evils, but it was still lesser. I still suspect that it would have been harder for us to develop a sense of self-worth, to suppress the feeling that we were a "freak," to have a concrete sense that we were good at anything at all, if we'd done the "early intervention" route, having every single thing we did categorized and dissected and the chopped-up bits fed back to us. We did get some of that stuff in therapy later, as a teenager and then as an adult, and we did have to do some work to get our independent thought back, but at least it wasn't being shoved down our throat from the time we were 2 or 3.
Funny thing. We know some people who were labeled, in early childhood, as having no future if they didn't receive some kind of "treatment," who spent hours doing stupid routines of making eye contact and repeating meaningless phrases to get stickers and M&Ms. They weren't that different from us as kids from how they've described it, and they aren't that different from us as adults, either.
And if you think this kind of thing only happens to "kids who sit in corners and bang their heads," please read this: They hate you. Yes, you. (Putting aside, even so, that sitting in corners screaming, or punching yourself or bashing your head, isn't necessarily alien to things we did in our childhood when we were just too frustrated, or what we saw others in our family do. For a long time we believed that some of the things referred to as self-injury were normal things for people to do when they were pushed over the edge.) It's about not having the power to resist when someone decides they don't like the way you move, the way you talk, the way you relate to other people.
Something else we can't help noticing: Part of the whole "early intervention" schtick seems to be teaching, implicitly or explicitly, that having autistic friends, autistic ways of friendship, of communication both verbal and nonverbal, is not allowed. Partly because it's assumed that if we can't read NT nonverbal communication, we can't read each other's, which is actually very untrue. We've heard tons of anecdotes from others and experienced it personally, but for now I'll just cite, as a single example, the fact that we were able to tell from a few in-person meetings with another autistic person (a plural system actually) that they had been trained to give more eye contact than they were comfortable with, and still tried to force themselves to do it sometimes out of habit. And they could also read things into our body language. But nobody studies this stuff because Experts (tm) insist it does not exist.
But what passes for "understanding" even among people who insist they accept their child's differences. Still so much condescending otherizing glossy talk and attempts to "get rid of" habits and behaviors that there's nothing inherently wrong with. We can't read most "autism parent" blogs for long without finding them honestly very triggering. I don't mean in the sense of "wah, I got triggered and now I can't control myself"-- just that we get really angry when we see people being carved up into "behaviors" in a condescending, other-izing way, when we see them described in a certain way, a certain way of writing about people that assumes they will never read or understand it.
Little phrases. "Living in their own world." Thinking of the times when we heard people say that about us when we spent hours pacing or playing with string, talking about us in third person like we couldn't hear. "She's off in her own world." Hearing people say "She can't hear you. She doesn't even notice you." Thinking of how people got us to say that we had "a fantasy world" when we actually didn't, to describe ourselves to others in those terms, and apologize for being "off in the fantasy world again" when we were having things like auditory processing difficulties.
What would it have been like if that idea had ruled everyone's view of us? That we somehow didn't perceive the world around us, didn't see it (even when much of what was called "being in another world" was actually us getting very deeply into aspects of this world right here, in a way that was apparently considered excessive, at least for people not on psychedelic drugs). I think we're glad that we don't know.
And again-- we're not condoning everything our parents did, not saying everything is okay because they didn't shove us through the cure route. Some of it was absolutely not excusable by any stretch of imagination. Some of their motives for insisting that we weren't unusual or disabled weren't the best motives, to put it lightly. But reading all this "life with my autistic child" stuff, makes us extremely aware that there are other types of bad things we were spared, partly because of our family, partly because of random chance and privilege, and partly because ideas about autism were so different when we were children.
And the lesser of two evils is still bad, and we could still complain validly about some of the ways people did try to "cure" us of what was considered bad behavior. In Catholic school, for instance, some of our teachers were very nasty, in just about all the stereotypical ways, but even so, if we had to make the choice, we'd still rather have that than having our will and independence subverted through "loving intervention." At least overt cruel punishment is something you can harden your will against, something you can resist inside-- when something is presented as loving, caring, necessary therapy from compassionate people, it sneaks into your head and leaves all kinds of nasty traps there.
April is, of course, "Autism Awareness Month." It used to be "Child Abuse Awareness Month." There's some kind of irony in how it got supplanted there, given some of the very abusive things that have been done and continue to be done to autistic children in the name of "treatment." It is always painful to see this time of year roll around and know that what glossy, slick, high-profile organizations like Autism Speaks mean, when they talk about "awareness," is actually "preventing people like yourself from existing in the future."
We don't talk a lot about our biological family online, for the most part. Anyone who knows us even vaguely well, knows that there's some troubled past there, though it's actually not so much that we consider it too horrible to ever speak of-- we have talked about much of it to people we trust a lot-- as that we consider it private. We also don't want to drag any other family member's past around in public without their permission.
The thing is, while our family was very far from perfect, and we've been shaped in many, many ways by the less ideal aspects of it, I am still finding myself oddly grateful this April that we were born decades before autism became big money, born before Asperger's syndrome became a diagnosis, born before "psychiatric screening" in public schools. Oddly grateful in some ways that our parents did too little for us, in terms of recognizing our disabilities, rather than too much, even if it was the lesser of two evils.
Whatever our "quirkiness" was thought to be, by others, when we were younger (and there was a whole lot of "quirkiness"), apparently it was a kind of quirkiness known enough on both sides of our family that no one thought we needed to be dragged to a doctor when we didn't meet certain "developmental milestones." The erring on the side of inaction wasn't always a good thing, as a few times we weren't taken to doctors for illnesses that could have become very serious, and we still have lasting aftereffects from some of those-- but it also led to us being able to enjoy certain types of freedom that many children growing up in today's climate of "autism awareness" are not being allowed to.
This post, She Will Never, sums up a lot of the reasons for our anger. If kids who-- according to their parents' and teachers' descriptions of them-- are doing just about the same things we were doing at the age of 3, or 6, or 12, or can even do things that we couldn't do at those ages, are being said to have a "poor prognosis" or "fair prognosis," or "no future," that they will "never live independently," "never make friends," "never have relationships," what would they have said about us? Kids who are exactly like we were, in many ways, described as having no future unless they receive "intensive intervention" and "intensive social skills training," training to make eye contact, training to have "normal conversations," to live in a world in which it is assumed there is no one else like themselves, that all their adjustment will have to be about them accomodating to "normal" society and not the other way around.
We were not given social skills training. We did not spend hours being drilled on how to make eye contact. We did not have to spend long, intense sessions being trained to "recognize non-verbal cues" and "identify emotions" on people's faces. It was assumed that if we did not have certain skills at a given time, it was because we were still a child and would learn them as we got older. Our abilities at the age of 3 were not taken to be representative of what our abilities would be for the rest of our life if we did not receive "intensive early intervention." Whatever else our parents might have done wrong, and there was quite a bit, they did not spend their time dissecting our day-to-day behavior in a cutesy, otherizing, patronizing way in blogs, chronicling every single meltdown, talking about it as a "wonderful accomplishment" if we were forced to stop stimming, pacing, etc.
Yes, we were punished, had perseverations taken away from us, if we were thought to be "too obsessed" or if something helpful to us was regarded as a "bad behavior", and I'm not defending those as good things. But no one ever scrutinized our behavior hyper-intensively and decided which things were "too autistic" and what things needed to be slowly and methodically punished or taken away in an attempt to match us up to some non-autistic "age-appropriate" ideal. Sometimes in school we were punished for stimming or flapping, or had people physically grab us and pin our hands down or hold them immobile, and I'm not saying that was a good thing, but it was still better than to have it obsessed over and treated as A Symptom that needed to be Extinguished through behaviorism. Some of the things that would be considered "too autistic" by most doctors, that are certainly considered so in most autism parent blogs and forums, were considered cute or charming by our family and even some teachers.
Nobody spent long hours poring over what our drawings of people "meant," whether the imaginative games we played indicated that we "had a concept of others' minds." When we preferred playing games about being inanimate objects to playing games about being humans, nobody ever said this was proof that we had a deficient "theory of mind," that we regarded people as objects. (It was actually the other way around, if anything-- we assumed that objects were the same as people in early childhood, treated them as though they were conscious and felt emotions.) Nobody ever thought that we lacked empathy or had no innate concept that other people had feelings and could be hurt. If we appeared to be ignoring others' feelings, to be indifferent when we'd hurt someone, this was treated as unkindness and bad behavior in the same way any other child's was, because no one assumed that we intrinsically lacked the capacity to understand others had feelings in the first place.
Nobody assumed that the highest goal we could ever hope to attain to would be to "blend in," to be "indistinguishable from our peers." They assumed that we had the same range of life ambitions available to us as other children of our age, physical sex, and economic and social group. When we said we wanted to be a writer, no one told us it was not possible for us to be one because of our neurology, because we were supposedly "imagination-impaired" and couldn't imagine others' thought processes. As it turned out, people actually overestimated our abilities in several areas (not imagination, but other things), and assumed we didn't have disabilities to the extent we did, sometimes to the point of denying we had any-- and while that certainly caused us problems of its own, our childhood experience would have been very different, and more unpleasant in many ways, if we were constantly being told that the goal of our life was to appear non-autistic.
I don't know what our life would have been like if all those things had happened. There's no way for us to look into a parallel universe where it did, or rewind the tape and play it back differently. We did end up being extremely self-conscious because of our mother's treatment of us and because of being targeted by bullies, we spent a lot of time beating ourselves up needlessly because we thought we were "lazy" and "wanted to fail" when we couldn't acknowledge our disabilities. No, it wasn't perfect, it was far from it, and it was the lesser of two evils, but it was still lesser. I still suspect that it would have been harder for us to develop a sense of self-worth, to suppress the feeling that we were a "freak," to have a concrete sense that we were good at anything at all, if we'd done the "early intervention" route, having every single thing we did categorized and dissected and the chopped-up bits fed back to us. We did get some of that stuff in therapy later, as a teenager and then as an adult, and we did have to do some work to get our independent thought back, but at least it wasn't being shoved down our throat from the time we were 2 or 3.
Funny thing. We know some people who were labeled, in early childhood, as having no future if they didn't receive some kind of "treatment," who spent hours doing stupid routines of making eye contact and repeating meaningless phrases to get stickers and M&Ms. They weren't that different from us as kids from how they've described it, and they aren't that different from us as adults, either.
And if you think this kind of thing only happens to "kids who sit in corners and bang their heads," please read this: They hate you. Yes, you. (Putting aside, even so, that sitting in corners screaming, or punching yourself or bashing your head, isn't necessarily alien to things we did in our childhood when we were just too frustrated, or what we saw others in our family do. For a long time we believed that some of the things referred to as self-injury were normal things for people to do when they were pushed over the edge.) It's about not having the power to resist when someone decides they don't like the way you move, the way you talk, the way you relate to other people.
Something else we can't help noticing: Part of the whole "early intervention" schtick seems to be teaching, implicitly or explicitly, that having autistic friends, autistic ways of friendship, of communication both verbal and nonverbal, is not allowed. Partly because it's assumed that if we can't read NT nonverbal communication, we can't read each other's, which is actually very untrue. We've heard tons of anecdotes from others and experienced it personally, but for now I'll just cite, as a single example, the fact that we were able to tell from a few in-person meetings with another autistic person (a plural system actually) that they had been trained to give more eye contact than they were comfortable with, and still tried to force themselves to do it sometimes out of habit. And they could also read things into our body language. But nobody studies this stuff because Experts (tm) insist it does not exist.
But what passes for "understanding" even among people who insist they accept their child's differences. Still so much condescending otherizing glossy talk and attempts to "get rid of" habits and behaviors that there's nothing inherently wrong with. We can't read most "autism parent" blogs for long without finding them honestly very triggering. I don't mean in the sense of "wah, I got triggered and now I can't control myself"-- just that we get really angry when we see people being carved up into "behaviors" in a condescending, other-izing way, when we see them described in a certain way, a certain way of writing about people that assumes they will never read or understand it.
Little phrases. "Living in their own world." Thinking of the times when we heard people say that about us when we spent hours pacing or playing with string, talking about us in third person like we couldn't hear. "She's off in her own world." Hearing people say "She can't hear you. She doesn't even notice you." Thinking of how people got us to say that we had "a fantasy world" when we actually didn't, to describe ourselves to others in those terms, and apologize for being "off in the fantasy world again" when we were having things like auditory processing difficulties.
What would it have been like if that idea had ruled everyone's view of us? That we somehow didn't perceive the world around us, didn't see it (even when much of what was called "being in another world" was actually us getting very deeply into aspects of this world right here, in a way that was apparently considered excessive, at least for people not on psychedelic drugs). I think we're glad that we don't know.
And again-- we're not condoning everything our parents did, not saying everything is okay because they didn't shove us through the cure route. Some of it was absolutely not excusable by any stretch of imagination. Some of their motives for insisting that we weren't unusual or disabled weren't the best motives, to put it lightly. But reading all this "life with my autistic child" stuff, makes us extremely aware that there are other types of bad things we were spared, partly because of our family, partly because of random chance and privilege, and partly because ideas about autism were so different when we were children.
And the lesser of two evils is still bad, and we could still complain validly about some of the ways people did try to "cure" us of what was considered bad behavior. In Catholic school, for instance, some of our teachers were very nasty, in just about all the stereotypical ways, but even so, if we had to make the choice, we'd still rather have that than having our will and independence subverted through "loving intervention." At least overt cruel punishment is something you can harden your will against, something you can resist inside-- when something is presented as loving, caring, necessary therapy from compassionate people, it sneaks into your head and leaves all kinds of nasty traps there.