When I was young, say 8 or 9 or so, I was in the waiting room of a doctor's office. I don't remember whose appointment it was, or why, but it doesn't really matter, I guess.
It was a long waiting time, and they always have those awful fluorescent bulbs. They use to bother me more when I was a kid, giving me headaches and making it hard to focus and process information and whatnot. The effect is the same now, but to a lesser degree.
There were other kids around. They played by the corner, where the kids' toys were. I wanted to go join them, but my mom said I was too old.
I love that thing where there are the beads, and there are the thin, plastic tracks they can follow in curvy paths to the bottom. I liked to envision it as an advanced public transportation system. Please board the Green Bead Line on its way to Chicago. Now boarding. Please have your ticket ready.
But I was too old, and certainly my sisters, one 2.5 years older than me, approximately, and one almost exactly 5 years and 4 days older than me, were too old, though they didn't express interest in these toys. When I was 13 visiting a neurologist for my seizures, there was a picture book about a Brain Cell. Or something like that. I should write fanfic for him.
The lights continued to glare, and people's names would be called, people picking up and flipping through magazines, babies crying. It was all so much. So, I made a dive for it, and I burrowed myself under the chair I had been sitting in and pretended I was in a Bomb Shelter, hiding from horrible and yet unknown threats from above.
My mom tried to get me out from under there, and tried to recruit my sisters for help. But no, they must be only clones of my family, trying to get me out of there so that I wouldn't be safe from the attack!
My sisters ended up joining in my play. Or at least, I thought so. Turns out they were just making excuses to be rowdy, but I didn't know, and I thought of them as the intruding army. I covered my ears so they wouldn't use their brainwashing propaganda tactics to turn me into a vampiric zombie. As presumably they would.
So I got out of the shelter and started pacing about in circles, humming to keep their threatening broadcasts from reaching my ears.
My mom whispers loudly, in that frantic-type voice, "Melody, you're embarrassing me!"
Without pausing in my circuit, I say, matter-of-factly, the wisest thing I believe came out of my mouth during my youth: "I can't embarrass you. You can only embarrass yourself."
Of course, what I meant was: The fact that I'm doing something doesn't embarrass you. It's that the thing I'm doing is something you don't look at as socially acceptable, because of what others might think, and so because of your attitudes, you are becoming embarrassed.
I thought of this as I took my written exam for taekwondo, and there was a question about attitude, and how it's important how you react to stuff.
"Life is 10% what happens to me, and 90% how I react to it."
I knew how I would react to it. My mom now knows how she will react to it. How will you react to it?
Showing posts with label social acceptability. Show all posts
Showing posts with label social acceptability. Show all posts
19 January 2008
02 January 2008
A Rant About Entitlement
Some people act like they're entitled to a certain standard of living, a certain child, or a certain material gain. To me it seems to be a version of that whole "American Dream" concept and the glass ceiling - but with a twist. The thing is, under certain unexpected circumstances, the privileged find themselves in a situation where one of their assumptions about how their life would turn out is not met. Rather than look at things as challenges or part of life, they look at it as an attack of their entitlement.
What spurred this rant?
The only part of Autism Every Day I laughted out loud was when that woman was complaining about her poor, leaking roof, where she had this elaborate setup to catch the water. Ha! Try not having running water and leaks so that when you need a bucket of water to wash your hair or do dishes you have to go outside in the rain and turn the water on, but you only have a few minutes and no heating and, hm, here's a thought, put a TARP over your roof.
Maybe that's harsh, and I don't think I particularly have any business levelling this claim of "whininess". I felt similarly to this when I read the book "Nickel and Dimed: On (not) Getting By in America".
The author, while well-intentioned, and I wouldn't criticize her motives, seemed to make a big deal out of difficulties that are part of the everyday living experience for myself and a large percentage of the human population. It almost had the undertone of "Let's pity these unfortunate poor people who must work for minimum wage."
I am familiar with the very real struggles of being poor, at varying levels, but there is a difference between someone who CANNOT feed themselves and their family, and someone who can but faces additional difficulties and cannot afford most of the amenities that many Americans seem to take for granted. In fact, many of the minimum-wage workers she worked alongside didn't have much interest in creating a (minor) revolution in the system, and got by fine. (Remember, we're talking minimum-wage, not below-means. Multiple jobs are sometimes just a fact of life.)
Of course, someone who's got things a lot worse than I do, if they read a life story of mine, would probably respond similarly "If she thinks this is tough..." And they'd be right in that.
So what is the usefulness of such a line of thought?
Often, those who have enough disposable income that they don't have to worry about not getting the kids fed, or about getting the rent paid on time, their concerns go to the expectation of their kids going to (a prestigious?) university, to get the kids driving at age 16, and all those other measures that society looks at for material success. People who aren't so focused on just surviving experience the added pressure of having an "ideal" family setup.
Not that the poorer parents would have any less difficulty raising an autistic child - more would be the standard fare, I'd presume. But the attitude that something is "missing" or that the child would somehow bring embarassment to the family's image just doesn't seem to be so rampant among people who just want to make sure their kids survive, rather than spending additional energy trying to get them "near-normal" or anything like that.
Maybe I'm wrong. And in any case, it would be just a trend, and trends never do tell anything especially useful for individuals, except as relating to the societal attitudes and how these may or may not impact. It would certainly explain some of the marketing strategies employed in videos such as Autism Every Day. If the largest dollar amount in donations is going to come from wealthy or semi-wealthy people, it would make sense to appeal to the expectations and fears of the upper-middle class. If the potential donors can identify with the prospect of the "horror" of having an "aberrant" child, then they'll probably identify with the goals and support them.
What spurred this rant?
The only part of Autism Every Day I laughted out loud was when that woman was complaining about her poor, leaking roof, where she had this elaborate setup to catch the water. Ha! Try not having running water and leaks so that when you need a bucket of water to wash your hair or do dishes you have to go outside in the rain and turn the water on, but you only have a few minutes and no heating and, hm, here's a thought, put a TARP over your roof.
Maybe that's harsh, and I don't think I particularly have any business levelling this claim of "whininess". I felt similarly to this when I read the book "Nickel and Dimed: On (not) Getting By in America".
The author, while well-intentioned, and I wouldn't criticize her motives, seemed to make a big deal out of difficulties that are part of the everyday living experience for myself and a large percentage of the human population. It almost had the undertone of "Let's pity these unfortunate poor people who must work for minimum wage."
I am familiar with the very real struggles of being poor, at varying levels, but there is a difference between someone who CANNOT feed themselves and their family, and someone who can but faces additional difficulties and cannot afford most of the amenities that many Americans seem to take for granted. In fact, many of the minimum-wage workers she worked alongside didn't have much interest in creating a (minor) revolution in the system, and got by fine. (Remember, we're talking minimum-wage, not below-means. Multiple jobs are sometimes just a fact of life.)
Of course, someone who's got things a lot worse than I do, if they read a life story of mine, would probably respond similarly "If she thinks this is tough..." And they'd be right in that.
So what is the usefulness of such a line of thought?
Often, those who have enough disposable income that they don't have to worry about not getting the kids fed, or about getting the rent paid on time, their concerns go to the expectation of their kids going to (a prestigious?) university, to get the kids driving at age 16, and all those other measures that society looks at for material success. People who aren't so focused on just surviving experience the added pressure of having an "ideal" family setup.
Not that the poorer parents would have any less difficulty raising an autistic child - more would be the standard fare, I'd presume. But the attitude that something is "missing" or that the child would somehow bring embarassment to the family's image just doesn't seem to be so rampant among people who just want to make sure their kids survive, rather than spending additional energy trying to get them "near-normal" or anything like that.
Maybe I'm wrong. And in any case, it would be just a trend, and trends never do tell anything especially useful for individuals, except as relating to the societal attitudes and how these may or may not impact. It would certainly explain some of the marketing strategies employed in videos such as Autism Every Day. If the largest dollar amount in donations is going to come from wealthy or semi-wealthy people, it would make sense to appeal to the expectations and fears of the upper-middle class. If the potential donors can identify with the prospect of the "horror" of having an "aberrant" child, then they'll probably identify with the goals and support them.
31 December 2007
Behaviorism on the Playground
If I were to write that parents were specifically instructing their children to be agents of social control to enforce social norms among their peers, I would have accusation after accusation leveled against my sanity.
They would call me paranoid. And I'd likely agree.
While perhaps a grand-scale conspiracy to purposefully train children to behave "typically" and suppress creativity or originality of expression would sound scarier, more Orwellian, I would argue that the system we are placed in does just that, but is more dangerous, as it is not specifically mandated. If it were specifically mandated, then people would recognize what it is.
Kids grow up with the ideas that some kinds of people are inferior. Some kinds of people just don't have a future. Some kinds, even if the individual doesn't have any specific problem with them, are "just begging" to get harassed, "just asking for" a theft. A beating. A rape. A murder.
Some have asked me why there is a need for an Autistic Rights organization, such as the one I have established at my school with the help and inspiration from my friends. It wasn't until the seventh grade that I started to catch on to the fact that this kind of abuse is inherent to the institution.
I started to understand why I had been refused the right to file a report for the attacks committed against me, and then a year later, when expressing my anger at having been refused, given the token privilege of writing a report which would have no real legitimacy, as it was filed approximately six months after the actual incident. "Too bad that you didn't file it last year, or we could've done something about it."
Ha. What a fucking crock. However hard it was for me, even though I had to spend day after day going into the office, being unable to summon words to speak (I had no means to type at the time), and then after a week of sitting and doing nothing, missing the classes which would only bore and torment me (the offenders were in nearly every class), I finally asked to file a report, when I realized this might be an option when seeing a girl come in to file a report after a boy said some nasty things to her, and being flatly refused, even though I told her that the offenses included assault and sexual harassment (in retrospect, sexual assault would also apply).
So how was the response? I told her a couple of the tame things that had been said to me. I told her there were some worse things, but I couldn't say them. She set her pen to one of the pink slips used to call students out of class, and once she had progressed to the fourth one, I asked what she was doing. She replied she was calling them in here, to let them speak for themselves, face to face with me. In utter horror, I fled. Ran out of her office, wandered for who knows how many hours around campus, unable to even find my way back anywhere at this point.
This same counselor was the one who told me that, because I rocked, because I had seizures, because I didn't dress in popular clothing (hand-me-downs, such as plain t-shirts and jeans that hardly fit, don't exactly count as popular among teenage girls, I suppose), because I was rumored to be lesbian, because I didn't talk much, because I was politically considered radically liberal (only because most of the population of the area is very conservative), because I had an odd gait, etc. etc. These were all reasons she told me I had to expect getting beaten up and insulted.
"I never asked to be popular. I just want to have what I am legally entitled to, and that is a safe educational environment." Ignored again. Not that it should have surprised me. She is, after all, the same counselor who told me, "There are three things you don't talk about: religion, politics, and space aliens." (UFOs were a special interest of mine.) To which the other, visiting counselor from the high school replied, "And abortion."
Such strange advice, considering that, outside of a close acquaintance or two, I did not in fact discuss any of these. Though, the first year of high school, I prided myself in engaging in intelligent conversations with my peers on these as well as a number of other subjects. But when it comes right down to it, when you rarely talk, and you never approach people you're not well acquainted with, you don't even get much opportunity to go at length on discussing interests. The only people I got to do that with, really, were my family.
If someone told a woman, "It's your fault you got raped because you're attractive - you have to expect that kind of treatment when you're attractive" wouldn't there be an outrage? Likewise, isn't telling someone that it's their fault they've been assaulted because they're autistic and look weird as much an outrage?
The problem here, is that the social control here implemented is implicit to the people and the institutions that run them. There needs to be watchdogs for this kind of discrimination. Every person should know that their rights in the school or in the workplace or out on the streets should be secured, regardless of neurological status. Such a thing should also cover people who don't have a diagnosis, but who have been made to feel that it is their fault for not conforming.
The main thing to get across here is that there is a difference between a person being unpopular and a person who is having crimes committed against them because of that unpopularity. Such a policy as I wrote isn't some attempt to make everybody feel like they're accepted by everybody else. Such is a noble goal, but it is not a goal that can be attained by passing a law. Attaining acceptance is the job of advocacy. The job of laws is legal protection.
If such a law were in place, I would not have been petrified night after night of what punishment the next day I might face for being who I cannot help but be - who I wouldn't want an alternative but to be. Such a law would mean that, while I know it is hard to be part of an "unwanted" class, a burden to the normal, "deserving" people, at least I will have assurance that it is really, truly not my fault.
The problem here is access. Students, particularly disabled students, need a clear route by which to access the safe education they are legally entitled to, and by consequence to the safe existence to which they are morally entitled. Just like we run tapes and distribute brochures to educate students about sexual harassment and their rights, we should actively reach out to students who are autistic or otherwise disabled, different, or considered damaged.
Until then, we will always have students providing a negative stimulus, and teachers and counselors reinforcing, and regardless of capacity or desire for change the students at the hands of such treatment will forever remain clinging to the chainlink fence in hopes of escaping to the other side.
They would call me paranoid. And I'd likely agree.
While perhaps a grand-scale conspiracy to purposefully train children to behave "typically" and suppress creativity or originality of expression would sound scarier, more Orwellian, I would argue that the system we are placed in does just that, but is more dangerous, as it is not specifically mandated. If it were specifically mandated, then people would recognize what it is.
Kids grow up with the ideas that some kinds of people are inferior. Some kinds of people just don't have a future. Some kinds, even if the individual doesn't have any specific problem with them, are "just begging" to get harassed, "just asking for" a theft. A beating. A rape. A murder.
Some have asked me why there is a need for an Autistic Rights organization, such as the one I have established at my school with the help and inspiration from my friends. It wasn't until the seventh grade that I started to catch on to the fact that this kind of abuse is inherent to the institution.
I started to understand why I had been refused the right to file a report for the attacks committed against me, and then a year later, when expressing my anger at having been refused, given the token privilege of writing a report which would have no real legitimacy, as it was filed approximately six months after the actual incident. "Too bad that you didn't file it last year, or we could've done something about it."
Ha. What a fucking crock. However hard it was for me, even though I had to spend day after day going into the office, being unable to summon words to speak (I had no means to type at the time), and then after a week of sitting and doing nothing, missing the classes which would only bore and torment me (the offenders were in nearly every class), I finally asked to file a report, when I realized this might be an option when seeing a girl come in to file a report after a boy said some nasty things to her, and being flatly refused, even though I told her that the offenses included assault and sexual harassment (in retrospect, sexual assault would also apply).
So how was the response? I told her a couple of the tame things that had been said to me. I told her there were some worse things, but I couldn't say them. She set her pen to one of the pink slips used to call students out of class, and once she had progressed to the fourth one, I asked what she was doing. She replied she was calling them in here, to let them speak for themselves, face to face with me. In utter horror, I fled. Ran out of her office, wandered for who knows how many hours around campus, unable to even find my way back anywhere at this point.
This same counselor was the one who told me that, because I rocked, because I had seizures, because I didn't dress in popular clothing (hand-me-downs, such as plain t-shirts and jeans that hardly fit, don't exactly count as popular among teenage girls, I suppose), because I was rumored to be lesbian, because I didn't talk much, because I was politically considered radically liberal (only because most of the population of the area is very conservative), because I had an odd gait, etc. etc. These were all reasons she told me I had to expect getting beaten up and insulted.
"I never asked to be popular. I just want to have what I am legally entitled to, and that is a safe educational environment." Ignored again. Not that it should have surprised me. She is, after all, the same counselor who told me, "There are three things you don't talk about: religion, politics, and space aliens." (UFOs were a special interest of mine.) To which the other, visiting counselor from the high school replied, "And abortion."
Such strange advice, considering that, outside of a close acquaintance or two, I did not in fact discuss any of these. Though, the first year of high school, I prided myself in engaging in intelligent conversations with my peers on these as well as a number of other subjects. But when it comes right down to it, when you rarely talk, and you never approach people you're not well acquainted with, you don't even get much opportunity to go at length on discussing interests. The only people I got to do that with, really, were my family.
If someone told a woman, "It's your fault you got raped because you're attractive - you have to expect that kind of treatment when you're attractive" wouldn't there be an outrage? Likewise, isn't telling someone that it's their fault they've been assaulted because they're autistic and look weird as much an outrage?
The problem here, is that the social control here implemented is implicit to the people and the institutions that run them. There needs to be watchdogs for this kind of discrimination. Every person should know that their rights in the school or in the workplace or out on the streets should be secured, regardless of neurological status. Such a thing should also cover people who don't have a diagnosis, but who have been made to feel that it is their fault for not conforming.
The main thing to get across here is that there is a difference between a person being unpopular and a person who is having crimes committed against them because of that unpopularity. Such a policy as I wrote isn't some attempt to make everybody feel like they're accepted by everybody else. Such is a noble goal, but it is not a goal that can be attained by passing a law. Attaining acceptance is the job of advocacy. The job of laws is legal protection.
If such a law were in place, I would not have been petrified night after night of what punishment the next day I might face for being who I cannot help but be - who I wouldn't want an alternative but to be. Such a law would mean that, while I know it is hard to be part of an "unwanted" class, a burden to the normal, "deserving" people, at least I will have assurance that it is really, truly not my fault.
The problem here is access. Students, particularly disabled students, need a clear route by which to access the safe education they are legally entitled to, and by consequence to the safe existence to which they are morally entitled. Just like we run tapes and distribute brochures to educate students about sexual harassment and their rights, we should actively reach out to students who are autistic or otherwise disabled, different, or considered damaged.
Until then, we will always have students providing a negative stimulus, and teachers and counselors reinforcing, and regardless of capacity or desire for change the students at the hands of such treatment will forever remain clinging to the chainlink fence in hopes of escaping to the other side.
15 December 2007
Tact and Advocacy
I sincerely would like to apologize about some of the insensitive people who claim to speak for the autistic community but in truth don't.
I am not strictly describing pro-cure NTs. There are also autistics who get on my nerves because not only are they narrow-minded, but they show no interest in expanding their understanding and perspective.
Of course these people are in the minority. It is unfortunate, however, that Alison Tepper Singer can be put on a video claiming to raise "awareness" as she describes the only reason she didn't kill her autistic daughter was because she had a normal daughter too and even be praised for her "courage", while a few narrow-minded autistics who state their views without presenting them in any kind of logically comprehensible OR emotionally sensitive way are demonized as "nasty self-advocates who want to take our kids' services away."
Like extreme views of anything, people are far too prone to get rigid and nasty about them, autistic or NT. I do not consider myself a "radical" or "extremist" for opposing the idea of cure. I tend to define these terms by the way a group or individual goes about achieving their goals. Of course, there are cases when the goals themselves are extremist and dangerous: who would argue that the advocacy for genocide, racist Social Darwinism, or war-mongering are not of themselves dangerous? Likewise, just because there are dangers to the ways that religious fundamentalists, such as of Christian and Islamic denominations, doesn't mean that everybody who is Christian or Muslim advocates for death to America or persecuting gays.
I hate it when autistics who don't have much of any of the disability aspect try to speak for everybody just as much as I hate it when non-autistic people try to speak for us. It's just no use.
On the Internet, I have encountered many pro-cure people who viciously attacked me even when I wrote about understanding that it can be very difficult for parents; my NT mother has had much trouble with me, and I do not have as many special needs as some others (such as, I can't brush my hair, but I can do toileting; I can speak, but often get overloaded and can't).
Remember everyone: assholes are assholes. Some of them happen to be autistic, some of them happen to be NT. It doesn't mean that either group is more prone to such attitudes.
Autism, while a disability that should receive supports, accommodations, and adaptive skills, should not be eradicated or looked at as wholly negative. I don't want a cure, but I also don't assume that the people who say they want one are bad parents/hate their kids/insert other stereotype.
I believe in diplomacy. This doesn't mean we have to be wishy-washy, roll-over-and-do-what-the-NTs-all-tell-us autistics. We can criticize the foundations of the ideas in favor of cure without resorting to ad hominem attacks on those who support it. Especially this is true since the word "cure" is often used to describe developing adaptive skills (such as speech and toileting), which I do not believe is cure.
While it is still very important that we not concede on helping parents to understand that being nonverbal is not a jail sentence, if the individual is capable and willing, some of these things are useful skills. We should focus more on the WAY the skills are taught, to see that they are not being coerced, that the individual is not made to feel inferior for "autistic behaviors." These, after all, are requisite to human equality, and I have no intention of conceding these goals, which need not be compromised by employing some empathy.
As to the divisions. They are Everywhere.
HFA, LFA, AS? Touch of AS? ND or curebie? Retards and computer geeks. I get pretty sick of it. Especially it annoys me when people use the word 'retard' as an insult. It is to me like using the word 'gay' as an insult. When I was in elementary school, I heard people say, "That is SO GAY - you're so GAY" so much that I preferred the word homosexual. It surprised me much when this summer I got my hands on a copy of The Advocate and some books about the gay rights movement, and I learned that the preferred term in the gay community is just that - gay. Why? Because 'homosexual' was too medicalized a term, one used often when it was a diagnosable disorder voted in by the APA and voted out again in 1973.
Why did I bring this up?
I am not sure at this point if I really forgot my topic or if I was trying to utilise a rhetorical strategy. In any case, the existence of a word alone does not make it offensive or acceptable. In fact, devoid of the usage and origin and other available context, a word has absolutlely no meaning, and is merely a string of the shapes of the letters to form it, and the sounds it would make if one were to produce it.
The problem lies with kids growing up thinking that if someone is gay or retarded, then they are less valuable and worth mocking. Growing up, I frequently got called both. I wonder how many grade-school kids get called "retarded lesbo?"
The fact is, whatever category people try to group me (or anybody else) into, to force-fit like the puzzle piece so many seem to think goes well with autistics into the narrow configuration so many would like to see me fit, I just can't, and I won't. Even though on the surface I resemble the math-and-science-obsessed Aspie stereotype, and that aspect of it is true, it is impossible to put someone in so narrow a box without losing a few chunks of the individual.
I tend to relate more to nonverbal auties who use a speech device than to the highly verbal aspie who has trouble with social skills. My social skills are actually pretty good; though eye contact and body language for me are atypical (in the case of eye contact, virtually nonexistent), and these are not instruments I use to augment my social understanding. Fortunately, the high school I attend is generally accepting of different people, so the fact that I spend 90%+ of my time at school rocking and moving my hands and occasionally getting up to pace, or those days in tae kwon do that I just can't speak at all, these don't affect friendships adversely for me. At my other school, where I repressed most of these behaviors to the best of my ability out of fear, I had the understanding of a select few, the sympathy of a few more onlookers who recognized injustice - most of whom did nothing to support my efforts, however.
So as we recognize that these labels are often used as dividing lines and demeaning labels, that we are not so simplistic as to fit them - no one is - we must also consider that not everybody is being a big NT meanie who wants to take away our rights and abort us. True, we cannot be weak and submissive, or we will only be worse than ignored, but being rude will work to this unfavourable end as well.
So please, I urge all budding activists, who seek to impact the posautive change that I have begun my journey to realize, to employ tact wherever it is necessary. Of course someone who outright insults you with an ad hominem attack loses that privilege, but where the individual is not making a direct attack that is meant to villify, then please employ this tact. It is difficult at times, and what helps me is to write my angry, emotional stuff down on a separate file, then post a logical, tactful reply. (Not that I always succeed - I am sure that I have slipped up. My crowning achievement in this area is when in response to a YouTube video in which a parent referred to the autism "epidemic" as a "slaughter" I kept my cool for a 500 word response limit.)
I am not strictly describing pro-cure NTs. There are also autistics who get on my nerves because not only are they narrow-minded, but they show no interest in expanding their understanding and perspective.
Of course these people are in the minority. It is unfortunate, however, that Alison Tepper Singer can be put on a video claiming to raise "awareness" as she describes the only reason she didn't kill her autistic daughter was because she had a normal daughter too and even be praised for her "courage", while a few narrow-minded autistics who state their views without presenting them in any kind of logically comprehensible OR emotionally sensitive way are demonized as "nasty self-advocates who want to take our kids' services away."
Like extreme views of anything, people are far too prone to get rigid and nasty about them, autistic or NT. I do not consider myself a "radical" or "extremist" for opposing the idea of cure. I tend to define these terms by the way a group or individual goes about achieving their goals. Of course, there are cases when the goals themselves are extremist and dangerous: who would argue that the advocacy for genocide, racist Social Darwinism, or war-mongering are not of themselves dangerous? Likewise, just because there are dangers to the ways that religious fundamentalists, such as of Christian and Islamic denominations, doesn't mean that everybody who is Christian or Muslim advocates for death to America or persecuting gays.
I hate it when autistics who don't have much of any of the disability aspect try to speak for everybody just as much as I hate it when non-autistic people try to speak for us. It's just no use.
On the Internet, I have encountered many pro-cure people who viciously attacked me even when I wrote about understanding that it can be very difficult for parents; my NT mother has had much trouble with me, and I do not have as many special needs as some others (such as, I can't brush my hair, but I can do toileting; I can speak, but often get overloaded and can't).
Remember everyone: assholes are assholes. Some of them happen to be autistic, some of them happen to be NT. It doesn't mean that either group is more prone to such attitudes.
Autism, while a disability that should receive supports, accommodations, and adaptive skills, should not be eradicated or looked at as wholly negative. I don't want a cure, but I also don't assume that the people who say they want one are bad parents/hate their kids/insert other stereotype.
I believe in diplomacy. This doesn't mean we have to be wishy-washy, roll-over-and-do-what-the-NTs-all-tell-us autistics. We can criticize the foundations of the ideas in favor of cure without resorting to ad hominem attacks on those who support it. Especially this is true since the word "cure" is often used to describe developing adaptive skills (such as speech and toileting), which I do not believe is cure.
While it is still very important that we not concede on helping parents to understand that being nonverbal is not a jail sentence, if the individual is capable and willing, some of these things are useful skills. We should focus more on the WAY the skills are taught, to see that they are not being coerced, that the individual is not made to feel inferior for "autistic behaviors." These, after all, are requisite to human equality, and I have no intention of conceding these goals, which need not be compromised by employing some empathy.
As to the divisions. They are Everywhere.
HFA, LFA, AS? Touch of AS? ND or curebie? Retards and computer geeks. I get pretty sick of it. Especially it annoys me when people use the word 'retard' as an insult. It is to me like using the word 'gay' as an insult. When I was in elementary school, I heard people say, "That is SO GAY - you're so GAY" so much that I preferred the word homosexual. It surprised me much when this summer I got my hands on a copy of The Advocate and some books about the gay rights movement, and I learned that the preferred term in the gay community is just that - gay. Why? Because 'homosexual' was too medicalized a term, one used often when it was a diagnosable disorder voted in by the APA and voted out again in 1973.
Why did I bring this up?
I am not sure at this point if I really forgot my topic or if I was trying to utilise a rhetorical strategy. In any case, the existence of a word alone does not make it offensive or acceptable. In fact, devoid of the usage and origin and other available context, a word has absolutlely no meaning, and is merely a string of the shapes of the letters to form it, and the sounds it would make if one were to produce it.
The problem lies with kids growing up thinking that if someone is gay or retarded, then they are less valuable and worth mocking. Growing up, I frequently got called both. I wonder how many grade-school kids get called "retarded lesbo?"
The fact is, whatever category people try to group me (or anybody else) into, to force-fit like the puzzle piece so many seem to think goes well with autistics into the narrow configuration so many would like to see me fit, I just can't, and I won't. Even though on the surface I resemble the math-and-science-obsessed Aspie stereotype, and that aspect of it is true, it is impossible to put someone in so narrow a box without losing a few chunks of the individual.
I tend to relate more to nonverbal auties who use a speech device than to the highly verbal aspie who has trouble with social skills. My social skills are actually pretty good; though eye contact and body language for me are atypical (in the case of eye contact, virtually nonexistent), and these are not instruments I use to augment my social understanding. Fortunately, the high school I attend is generally accepting of different people, so the fact that I spend 90%+ of my time at school rocking and moving my hands and occasionally getting up to pace, or those days in tae kwon do that I just can't speak at all, these don't affect friendships adversely for me. At my other school, where I repressed most of these behaviors to the best of my ability out of fear, I had the understanding of a select few, the sympathy of a few more onlookers who recognized injustice - most of whom did nothing to support my efforts, however.
So as we recognize that these labels are often used as dividing lines and demeaning labels, that we are not so simplistic as to fit them - no one is - we must also consider that not everybody is being a big NT meanie who wants to take away our rights and abort us. True, we cannot be weak and submissive, or we will only be worse than ignored, but being rude will work to this unfavourable end as well.
So please, I urge all budding activists, who seek to impact the posautive change that I have begun my journey to realize, to employ tact wherever it is necessary. Of course someone who outright insults you with an ad hominem attack loses that privilege, but where the individual is not making a direct attack that is meant to villify, then please employ this tact. It is difficult at times, and what helps me is to write my angry, emotional stuff down on a separate file, then post a logical, tactful reply. (Not that I always succeed - I am sure that I have slipped up. My crowning achievement in this area is when in response to a YouTube video in which a parent referred to the autism "epidemic" as a "slaughter" I kept my cool for a 500 word response limit.)
24 November 2007
The Transparency of Hysteria
This was an essay I wrote for my Literature and Composition class. It is about Arthur Miller's play The Crucible, and I relate it to autism issues. Hillary Clinton at one point is mentioned; it could have been many people I would have mentioned, but as she is influencial in politics in general, I chose her mention.
The odd page numbers used in citations are from our class textbook. This essay, minus grammatical and spelling corrections and the like, took approximately one hour ten minutes and was restricted to about three pages double spaced in length, so it is not so thorough as it could be, but rather serves more as an outline for a project of greater depth.
Literature and Composition III
7 November 2007
The Transparency of Hysteria
As significant spatial and temporal distance removes people from personal involvement from a situation, the relevance of historical incidents of injustice increases in direct proportion with the time passed since the injustice occurred. Human history is smattered with repeats of mistakes – lessons learned, then promptly again forgotten. An illustration: the international community, following the Holocaust, responded with the vow of “never again.” Yet, less than a century later, the same community has taken little to no action in response to the genocide in Sudan. Another lesson briefly learned, studied, and then forgotten to move on to the next stage of the progress of civilization. In the same way as the importance of remembering the misdeeds of the past increases for such events as genocide, so must humanity step up to the commitments made upon the apologies and restitution made following the Salem witch trials.
Arthur Miller’s The Crucible is a perfect example.
Those who exist along the fringes of societal norms – be they women or communists, the homeless or the disabled – are used as the scapegoats for society’s problems. In the case of Salem, the fear lay with the sin and discontent of the community; in more modern times, the fear lies with the very same, though it manifests in various and less obvious guises.
In the United States today, secular values are at the very least tolerated, and a politician (or most other public figures) would face mockery for claiming that the Devil has infiltrated the country and poisoned the national community with sin. However, few who have made equivalent claims, substituting Devil with (insert unpopular ideology) and sin with (insert whatever condition or state is feared – and indeed it often still is sin), have been recognized as practitioners of quackery or purveyors of paranoid thought. Rather, such individuals are lauded for their obscenely ignorant claims, as society is “pulling Heaven down and raising up a whore” (876; Act III), allowing the culture of conformity to strengthen, feed upon its own fiery flesh. Such a lauded individual was Abigail Williams; more recently, Senator McCarthy (for his perpetuation of the Red Scare) and Hilary Clinton (for her propagation of eugenics ideals with regard to the autistic community) stand out. These signs of modern hysteria are evident, at least as evident as they were during the time of the Salem witch hunt. Just as one can justify the ignorance of Hilary Clinton by placing the blame on the conviction of the autism cure charities that they are working to save children, so can one divert the blame from Judge Danforth and Hathorne, as they were working under the belief that they were instruments of God. It is far easier to condemn in retrospect the irresponsible actions of a society, just as it is far easier to forgive in the current times actions of equivalent irresponsibility.
During the time of The Crucible, however, secular ideals were not at all valued. The idea that witches may not exist in the world was outside of the societal expectation, and surely any belief outside of the realm of the mainstream must represent a belief outside the realm of humanity. Such a person as could not remember every commandment, or who might lie or grumble or act in any way that would break conformity of belief, was automatically transferred to a lesser status, a status of rank lesser than that of a true human being. Elizabeth acknowledges this degradation of character when she firmly stands by her beliefs and tells Reverend Hale that “if you think that I am one, then I say there are none.” (858; Act II). It was for this reason that it wasn’t until those with “weighty names” were hanged that people began to question the validity of the trials. Similar to this precedent, until the “higher-functioning” range of the autistic spectrum was made known, there were essentially no non-autistic people arguing against a cure. On the artificial hierarchy, those who look and act so vastly differently from the expectations to which human beings are socially judged may be disregarded as not even people, whereas someone on the spectrum who earns a college degree is held at a more “respectable” level, and so by mere academic merits the worth of the whole person elevates in the eyes of others. No one even took notice of even the possibility that there is an unjust war being waged against a group until someone of “weighty name” (such as Albert Einstein or Bill Gates) is speculated as being part of the group that the majority wishes to eradicate. This mechanism was the driving force behind John Proctor’s dilemma. Just as this is relevant to the characters of The Crucible, to those implicated in the HUAC, and to autistics, so it is relevant to many other groups and other time periods. Surely the pattern will not cease after the vogue hysterias of the day subside.
When Miller wrote The Crucible, many were pointed to as the source of America’s vulnerabilities and struggles. These supposed communists were said to be undermining the country, weakening its foundation. These strategies of diverting attention from issues and their solutions to the seductive proposal that “it’s their fault; let’s get rid of them” rings startlingly in resonance to the key of propaganda as was promulgated in Nazi Germany. It is fortunate that the United States did not set out to create death camps for communists or anything along these lines, but it is nonetheless built upon the same strategies of ideology that led to those tragedies, particularly when one keeps in mind that the eugenics movement got its tremendously popular start in early twentieth century America, and that the kind of sterilization laws that Nazi Germany implemented were modeled after equivalent laws in the United States. Miller addresses this by the testimony from Giles Corey’s anonymous informant that Thomas Putnam instructed his daughter to vilify the name of Jacobs in order to acquire personal gain (Act III). For this reason, such tactics cannot be dismissed. Miller intended to use this play to warn future generations of this fact, that travesties of justice recur, and recur with a greater frequency than it is preferable to believe. In order to avoid this scapegoating of people, we should evaluate prejudices towards the unfamiliar, and to look at the marginalization of those who lack power (for they may revolt), and to regard such people as much people as any other, for if there is no one to scapegoat, then people must look to themselves and to their society that they have created as the source of their discontent and the promise for their future, for any person may next fall into that category of the undesirable person and become a casualty of the cracking foundation.
The odd page numbers used in citations are from our class textbook. This essay, minus grammatical and spelling corrections and the like, took approximately one hour ten minutes and was restricted to about three pages double spaced in length, so it is not so thorough as it could be, but rather serves more as an outline for a project of greater depth.
Literature and Composition III
7 November 2007
The Transparency of Hysteria
As significant spatial and temporal distance removes people from personal involvement from a situation, the relevance of historical incidents of injustice increases in direct proportion with the time passed since the injustice occurred. Human history is smattered with repeats of mistakes – lessons learned, then promptly again forgotten. An illustration: the international community, following the Holocaust, responded with the vow of “never again.” Yet, less than a century later, the same community has taken little to no action in response to the genocide in Sudan. Another lesson briefly learned, studied, and then forgotten to move on to the next stage of the progress of civilization. In the same way as the importance of remembering the misdeeds of the past increases for such events as genocide, so must humanity step up to the commitments made upon the apologies and restitution made following the Salem witch trials.
Arthur Miller’s The Crucible is a perfect example.
Those who exist along the fringes of societal norms – be they women or communists, the homeless or the disabled – are used as the scapegoats for society’s problems. In the case of Salem, the fear lay with the sin and discontent of the community; in more modern times, the fear lies with the very same, though it manifests in various and less obvious guises.
In the United States today, secular values are at the very least tolerated, and a politician (or most other public figures) would face mockery for claiming that the Devil has infiltrated the country and poisoned the national community with sin. However, few who have made equivalent claims, substituting Devil with (insert unpopular ideology) and sin with (insert whatever condition or state is feared – and indeed it often still is sin), have been recognized as practitioners of quackery or purveyors of paranoid thought. Rather, such individuals are lauded for their obscenely ignorant claims, as society is “pulling Heaven down and raising up a whore” (876; Act III), allowing the culture of conformity to strengthen, feed upon its own fiery flesh. Such a lauded individual was Abigail Williams; more recently, Senator McCarthy (for his perpetuation of the Red Scare) and Hilary Clinton (for her propagation of eugenics ideals with regard to the autistic community) stand out. These signs of modern hysteria are evident, at least as evident as they were during the time of the Salem witch hunt. Just as one can justify the ignorance of Hilary Clinton by placing the blame on the conviction of the autism cure charities that they are working to save children, so can one divert the blame from Judge Danforth and Hathorne, as they were working under the belief that they were instruments of God. It is far easier to condemn in retrospect the irresponsible actions of a society, just as it is far easier to forgive in the current times actions of equivalent irresponsibility.
During the time of The Crucible, however, secular ideals were not at all valued. The idea that witches may not exist in the world was outside of the societal expectation, and surely any belief outside of the realm of the mainstream must represent a belief outside the realm of humanity. Such a person as could not remember every commandment, or who might lie or grumble or act in any way that would break conformity of belief, was automatically transferred to a lesser status, a status of rank lesser than that of a true human being. Elizabeth acknowledges this degradation of character when she firmly stands by her beliefs and tells Reverend Hale that “if you think that I am one, then I say there are none.” (858; Act II). It was for this reason that it wasn’t until those with “weighty names” were hanged that people began to question the validity of the trials. Similar to this precedent, until the “higher-functioning” range of the autistic spectrum was made known, there were essentially no non-autistic people arguing against a cure. On the artificial hierarchy, those who look and act so vastly differently from the expectations to which human beings are socially judged may be disregarded as not even people, whereas someone on the spectrum who earns a college degree is held at a more “respectable” level, and so by mere academic merits the worth of the whole person elevates in the eyes of others. No one even took notice of even the possibility that there is an unjust war being waged against a group until someone of “weighty name” (such as Albert Einstein or Bill Gates) is speculated as being part of the group that the majority wishes to eradicate. This mechanism was the driving force behind John Proctor’s dilemma. Just as this is relevant to the characters of The Crucible, to those implicated in the HUAC, and to autistics, so it is relevant to many other groups and other time periods. Surely the pattern will not cease after the vogue hysterias of the day subside.
When Miller wrote The Crucible, many were pointed to as the source of America’s vulnerabilities and struggles. These supposed communists were said to be undermining the country, weakening its foundation. These strategies of diverting attention from issues and their solutions to the seductive proposal that “it’s their fault; let’s get rid of them” rings startlingly in resonance to the key of propaganda as was promulgated in Nazi Germany. It is fortunate that the United States did not set out to create death camps for communists or anything along these lines, but it is nonetheless built upon the same strategies of ideology that led to those tragedies, particularly when one keeps in mind that the eugenics movement got its tremendously popular start in early twentieth century America, and that the kind of sterilization laws that Nazi Germany implemented were modeled after equivalent laws in the United States. Miller addresses this by the testimony from Giles Corey’s anonymous informant that Thomas Putnam instructed his daughter to vilify the name of Jacobs in order to acquire personal gain (Act III). For this reason, such tactics cannot be dismissed. Miller intended to use this play to warn future generations of this fact, that travesties of justice recur, and recur with a greater frequency than it is preferable to believe. In order to avoid this scapegoating of people, we should evaluate prejudices towards the unfamiliar, and to look at the marginalization of those who lack power (for they may revolt), and to regard such people as much people as any other, for if there is no one to scapegoat, then people must look to themselves and to their society that they have created as the source of their discontent and the promise for their future, for any person may next fall into that category of the undesirable person and become a casualty of the cracking foundation.
Sympathy For Murderers
It has happened a number of times, too many times. A parent who kills their disabled child and then receives not only unbearably light sentence, but receives compassion for the situation of the murderer in such a way that the portrait is painted of a sad but justifiable action.
Why does this happen then? It is easy to point to ableism at work, much as racism when someone who is part of a racial minority is killed. This only looks to the surface, though. It looks to the cause of the misplaced compassion as being the original devaluation of disabled people.
Most people acknowledge murder as wrong, and absolutely reprehensible in most circumstances. It becomes incomprehensible to conceive of a parent murdering their own child or children. So incomprehensible that there must be some reason. Some look for mental illness - in turn casting the misconceptions to people themselves with disability. Some look for traumatic background of the murderer.
Probably you'll scoff at the latter. "What kind of excuse is that?!" -- This is just the thing that I would respond to either of these diversions of blame. Neither of them excuse the action, or make it "more understandable" as in lending some justifiable predisposition towards.
So here I present my conjecture: In being unable to conceive of a parent killing their own kid, they feel that there must be some reason that the parent acted this way, some justification that would propel someone into something impossible to conceive.
And disability makes the perfect scapegoat.
Rather than being fueled by the inherent ableist prejudices of the society (which doubtless exist), this looking to disability as a justifying circumstance is fueled by the desire to not believe people are capable of such evil as would ordinarily connote murder of (especially one's own) children. Of course, the unfortunate by-product of this line of thinking is an illogical jump to the thinking that puts the life of a disabled person as less valuable than that of a "normal" person. And so contributes to prejudices about people such as mercy killings, fault of the insufficient services, the torment inherent to the disability itself, and other such nonsense.
This is far less in-depth than I had intended, and probably much less clearly stated than I had intended.
Why does this happen then? It is easy to point to ableism at work, much as racism when someone who is part of a racial minority is killed. This only looks to the surface, though. It looks to the cause of the misplaced compassion as being the original devaluation of disabled people.
Most people acknowledge murder as wrong, and absolutely reprehensible in most circumstances. It becomes incomprehensible to conceive of a parent murdering their own child or children. So incomprehensible that there must be some reason. Some look for mental illness - in turn casting the misconceptions to people themselves with disability. Some look for traumatic background of the murderer.
Probably you'll scoff at the latter. "What kind of excuse is that?!" -- This is just the thing that I would respond to either of these diversions of blame. Neither of them excuse the action, or make it "more understandable" as in lending some justifiable predisposition towards.
So here I present my conjecture: In being unable to conceive of a parent killing their own kid, they feel that there must be some reason that the parent acted this way, some justification that would propel someone into something impossible to conceive.
And disability makes the perfect scapegoat.
Rather than being fueled by the inherent ableist prejudices of the society (which doubtless exist), this looking to disability as a justifying circumstance is fueled by the desire to not believe people are capable of such evil as would ordinarily connote murder of (especially one's own) children. Of course, the unfortunate by-product of this line of thinking is an illogical jump to the thinking that puts the life of a disabled person as less valuable than that of a "normal" person. And so contributes to prejudices about people such as mercy killings, fault of the insufficient services, the torment inherent to the disability itself, and other such nonsense.
This is far less in-depth than I had intended, and probably much less clearly stated than I had intended.
11 November 2007
Some basic myths about autism
Keep in mind that, in any of my posts, inevitably there will be issues not addressed, or those that are barely elaborated. Anything less than a book is necessarily incomplete in this manner.
This is what I wrote in the comments/discussion section of an article in The Guardian about autism (some writing added, especially near end):
Anti-cure doesn't mean anti-support. I am autistic, and I am in speech therapy, since even though I write coherently, I rarely speak well (especially when I am to speak spontaneously, this is mostly impossible). I took until I was about 10 to be fully toilet trained, and I couldn't dress myself until I was about 8. I still can't brush my hair without help. The sound of my mother or sister making a phone call in the other room with the door shut was often a sensory overload. I scored in the bottom 8% of people my age in the Test Of Problem-Solving, with a social age level at <11 years, 4 months (I am 18). I have seizures and have head banged for a good portion of my life (not as common now, but still sometimes). I was diagnosed Asperger's at age 10 through the elementary school, and my dad has some autistic traits.
Anti-cure perspective is not only by Aspies or HFA people. Look to Amanda Baggs, who is a nonspeaking, autistic woman who stims very much. She is against cure.We do not believe that autism-related difficulties should be ignored. We believe that there should be a balance between adaptation (of the autistic person to a non-autistic society) and acceptance (of the autistic person by other people in society). One of the myths is that autistics are constantly suffering of autism. We suffer when adults at the school, or sometimes in the home, yell in our ears thinking that we are disobeying them, when in fact we simply are not hearing or are not understanding the specific instructions given.
Just because someone isn't smiling doesn't mean the happiness isn't there. I have tremendous difficulty hugging my parents, but they have been educated as to the realities of autism, that because I do not want physical contact does not mean that I don't care, or don't love them, or am cold and aloof or simply not trying.We are also said to be doomed to a life without friends. This is not true, although yes, it is harder for us than for others, and our friendships tend to have a different texture to them than NT relationships.
In elementary and junior high school, I never really had friends. I was beaten horribly by my peers, in fact, for my difference, for the way I rocked in history class, or needed clarification on so-called "simple" instructions that for me were incredibly vague. But the answer is not to get rid of autism, but rather to enforce the school counselors to follow the law. By law, those bullies should have been suspended (for some), expelled (for many others), or even faced criminal charges (for one or two of them). The counselor told me that if I behaved more "normally", then I wouldn't have these problems. She seemed to think that, since my test scores were high, then I must be high-functioning in all areas - and even if I could have changed, I made on that day the difficult resolve that even if I had the ability to change, and that this change would make my life so much easier, that I would not want to be anyone else.
In high school, I switched to an arts high school, where the student body was radically different from the other schools - they were incredibly accepting of differences, and when I got out of my seat in my literature class and spun around in the room, people didn't laugh at me, nor did they pity me. I was just being me, and people at the school thought it was cool - whether they knew it was in my neurological nature to behave this way, or whether they thought I was just nonconforming, I found a place where I was accepted as myself - as the person I was and wanted to be.
Nowadays, three years from when I entered the school, I have several friends, and I never make eye contact, I often break the flow of conversation with my silence, at not knowing what to say or how to say it, I rock and spin and have difficulty doing simple things unless everything is broken down into detailed instructions, I meltdown when the fire alarm rings, or when it is crowded and noisy, and my friends show me compassion just as they would if a "normal" friend had been assaulted (or insulted) and needed help, emotionally or physically. I am treated as a social equal, despite my social and speech ineptitude.
Helping an autistic person to function does not mean training him or her to make eye contact, or to stop spinning or rocking. When I do manage, to somehow, for some few seconds at a time, to make eye contact, I have an even harder time than usual in processing spoken speech. Stimming helps me to not get quite as stressed out from fluorescent lighting, or that grating buzzing sound I'm hearing now, from a machine not too distant.
It disturbs me is that much of the autism research supposedly going towards a cure and "prevention" is going toward the development of a pre-natal test for autism, so that parents can selectively abort their autistic children, an action that would amount to the eugenic screening out of autistics.
And do not think this is just an Aspie issue.
I would be just as saddened, and disheartened, to hear that autistics who don't speak, have IQ scores in the range of mentally retarded, and who have poor self-help skills were no longer being born as if the speaking, Nobel-prize-winning Aspies were no longer being born. The fact that I am compelled to state this is enough to show how bad the culture of perfection is gearing us to believe that none but those fitting the narrow mold of "perfect" and "high-functioning" are worth living their lives.
The truth is, functioning levels are often arbitrary, and offer no more use than a common stereotype when it comes to getting to know and helping people. I have heard/read things far more intelligent from some people who have IQ in the retarded range than some ignorant and stupid things I have heard/read from people with a Ph.D. in psychology. Our definitions of intelligence are flawed, as are our ideas of the inherent relationship between functioning level and value of person's existence as they are.
If you still believe that "low-functioning" people and the mentally retarded are not valuable enough people that they should be given opportunity to life as much as any "normal" person, I suggest that you expand your views. Peruse the blogs of the many intelligent autism and disability activists (ballastexistenz and Rett Devil come to mind). Learn about people by getting to know them, rather than going by first impressions and the words of outside professionals who may not have ever looked into the perspectives of the people they claimed to understand so well.
With regards to the issue of "should we try to prevent/cure people we deem to be less perfect than most", an example of fiction I recommend is the book Flowers For Algernon by Daniel Keyes. It is about a mentally retarded man who wants to be more like his "normal" friends and get smarter and so participates in an experimental surgery to increase his intelligence. I read it in eighth grade, and we had many discussions about genetic engineering and whether we should abort people with disabilities or try to make retarded people "smarter" (I feel that "smart" is a bit of a loaded word). These discussions basically set the foundations for my passion of advocacy I am beginning to take to a more serious interest. Mr. Williams (my language arts teacher of grade 8) was a great teacher and I thank him very much!
My two cents (whatever that means).
This is what I wrote in the comments/discussion section of an article in The Guardian about autism (some writing added, especially near end):
Anti-cure doesn't mean anti-support. I am autistic, and I am in speech therapy, since even though I write coherently, I rarely speak well (especially when I am to speak spontaneously, this is mostly impossible). I took until I was about 10 to be fully toilet trained, and I couldn't dress myself until I was about 8. I still can't brush my hair without help. The sound of my mother or sister making a phone call in the other room with the door shut was often a sensory overload. I scored in the bottom 8% of people my age in the Test Of Problem-Solving, with a social age level at <11 years, 4 months (I am 18). I have seizures and have head banged for a good portion of my life (not as common now, but still sometimes). I was diagnosed Asperger's at age 10 through the elementary school, and my dad has some autistic traits.
Anti-cure perspective is not only by Aspies or HFA people. Look to Amanda Baggs, who is a nonspeaking, autistic woman who stims very much. She is against cure.We do not believe that autism-related difficulties should be ignored. We believe that there should be a balance between adaptation (of the autistic person to a non-autistic society) and acceptance (of the autistic person by other people in society). One of the myths is that autistics are constantly suffering of autism. We suffer when adults at the school, or sometimes in the home, yell in our ears thinking that we are disobeying them, when in fact we simply are not hearing or are not understanding the specific instructions given.
Just because someone isn't smiling doesn't mean the happiness isn't there. I have tremendous difficulty hugging my parents, but they have been educated as to the realities of autism, that because I do not want physical contact does not mean that I don't care, or don't love them, or am cold and aloof or simply not trying.We are also said to be doomed to a life without friends. This is not true, although yes, it is harder for us than for others, and our friendships tend to have a different texture to them than NT relationships.
In elementary and junior high school, I never really had friends. I was beaten horribly by my peers, in fact, for my difference, for the way I rocked in history class, or needed clarification on so-called "simple" instructions that for me were incredibly vague. But the answer is not to get rid of autism, but rather to enforce the school counselors to follow the law. By law, those bullies should have been suspended (for some), expelled (for many others), or even faced criminal charges (for one or two of them). The counselor told me that if I behaved more "normally", then I wouldn't have these problems. She seemed to think that, since my test scores were high, then I must be high-functioning in all areas - and even if I could have changed, I made on that day the difficult resolve that even if I had the ability to change, and that this change would make my life so much easier, that I would not want to be anyone else.
In high school, I switched to an arts high school, where the student body was radically different from the other schools - they were incredibly accepting of differences, and when I got out of my seat in my literature class and spun around in the room, people didn't laugh at me, nor did they pity me. I was just being me, and people at the school thought it was cool - whether they knew it was in my neurological nature to behave this way, or whether they thought I was just nonconforming, I found a place where I was accepted as myself - as the person I was and wanted to be.
Nowadays, three years from when I entered the school, I have several friends, and I never make eye contact, I often break the flow of conversation with my silence, at not knowing what to say or how to say it, I rock and spin and have difficulty doing simple things unless everything is broken down into detailed instructions, I meltdown when the fire alarm rings, or when it is crowded and noisy, and my friends show me compassion just as they would if a "normal" friend had been assaulted (or insulted) and needed help, emotionally or physically. I am treated as a social equal, despite my social and speech ineptitude.
Helping an autistic person to function does not mean training him or her to make eye contact, or to stop spinning or rocking. When I do manage, to somehow, for some few seconds at a time, to make eye contact, I have an even harder time than usual in processing spoken speech. Stimming helps me to not get quite as stressed out from fluorescent lighting, or that grating buzzing sound I'm hearing now, from a machine not too distant.
It disturbs me is that much of the autism research supposedly going towards a cure and "prevention" is going toward the development of a pre-natal test for autism, so that parents can selectively abort their autistic children, an action that would amount to the eugenic screening out of autistics.
And do not think this is just an Aspie issue.
I would be just as saddened, and disheartened, to hear that autistics who don't speak, have IQ scores in the range of mentally retarded, and who have poor self-help skills were no longer being born as if the speaking, Nobel-prize-winning Aspies were no longer being born. The fact that I am compelled to state this is enough to show how bad the culture of perfection is gearing us to believe that none but those fitting the narrow mold of "perfect" and "high-functioning" are worth living their lives.
The truth is, functioning levels are often arbitrary, and offer no more use than a common stereotype when it comes to getting to know and helping people. I have heard/read things far more intelligent from some people who have IQ in the retarded range than some ignorant and stupid things I have heard/read from people with a Ph.D. in psychology. Our definitions of intelligence are flawed, as are our ideas of the inherent relationship between functioning level and value of person's existence as they are.
If you still believe that "low-functioning" people and the mentally retarded are not valuable enough people that they should be given opportunity to life as much as any "normal" person, I suggest that you expand your views. Peruse the blogs of the many intelligent autism and disability activists (ballastexistenz and Rett Devil come to mind). Learn about people by getting to know them, rather than going by first impressions and the words of outside professionals who may not have ever looked into the perspectives of the people they claimed to understand so well.
With regards to the issue of "should we try to prevent/cure people we deem to be less perfect than most", an example of fiction I recommend is the book Flowers For Algernon by Daniel Keyes. It is about a mentally retarded man who wants to be more like his "normal" friends and get smarter and so participates in an experimental surgery to increase his intelligence. I read it in eighth grade, and we had many discussions about genetic engineering and whether we should abort people with disabilities or try to make retarded people "smarter" (I feel that "smart" is a bit of a loaded word). These discussions basically set the foundations for my passion of advocacy I am beginning to take to a more serious interest. Mr. Williams (my language arts teacher of grade 8) was a great teacher and I thank him very much!
My two cents (whatever that means).
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