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 stims. Show all posts
Showing posts with label stims. Show all posts
19 January 2008
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.
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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