24 November 2007

Autistic Self-Advocacy Myths

The following is from a post I made on the Autism Speaks forums. I addressed it to the parents of autistic kids who have only seen neurodiversity and autistic self-advocates as being against helping their kids, to demonstrate the realities of what it means to be against cure, to show that we're not just some highly successful math geniuses who think autism is just a difference rather than both a difference and a disability. Don't think it was very effective, though, considering nobody has replied besides me (only 36 views, too).

I hate to see the polarization between autistic self-advocates who are against cure and the people of autism speaks and cure autism now. Because the truth is that we are all out to help improve the lot of autistics, and it's a shame to see people so easily become divided.

It happens when an aspie writes cocky that they are superior to NTs. It happens when accepting autism becomes dirty words with implication that we are to ignore people's difficulties that are due to disability and pretend that they don't struggle.

These, of course, are the more extreme of the both sides, and they do not represent the true motivations behind the causes - which, as stated already, are for the bright futures of autistics who are all too often left in the dust.

The truth is, accepting autism doesn't mean letting kids bang their heads and pretend that autism is a wonderful, positive thing that everyone should want. It means looking at the various limitations and disability and helping the person to adapt to the world and, where reasonable to adapt the world to autism. Most people I have read on this board seem to already fit this description of loving their kids as they are and wanting to help them get along, except that they also express the desire for a cure.

Autistic anti-cure self-advocates support helping people to talk, or if that doesn't work, to help them to communicate by typing or signing or such. And of course to also try to help with self-help skills (I myself am 17 and can't brush my own hair that is about shoulder-length by myself. I have, however, learned toileting skills and how to wash myself).

So I identify as autistic (Diagnosed Asperger's age 10). However, I am not so reactionary that, just because I am adamantly against cure for autism that I would deem anybody who supports it to be some "conformist NT" or some such nonsense. I want to write on behalf of autistic self-advocates who, like me, reject these extreme views. (The extreme people tend to be far more proliferate (is this a word? I tend to use words that I have no idea what they mean) and so are more noticeable.

I understand that there are many people whose needs for supports and services far outweigh mine. I speak, have the self-help skills I mention, and such things. In fact, I for a long time, while completely against curing Asperger's/HFA, wholly supported curing LFA autistics. It wasn't until this summer that I reevaluated my views and realized that I had been misguided.

Through the Internet, I got to converse with and read from autistic people who are considdered classically low-functioning Kanner's type autism. People who were, variously, mentally retarded, or nonverbal, or lacked in many "basic" self-help skills. Usually fit more than one of these descriptors. And they are against cure, too.

I am only asking that you reevaluate your views of autistic self-advocates and the goal of a cure. I will not try to use scare or sympathy tactics to try to sway you. Of course autism isn't easy. And even though I am what would be called high-functioning, I don't feel any advantages or special gifts that I attribute to autism. My heightened senses, they lead me to sensory overload. It is a foreign concept to me what it is to derive pleasure from this sensitivity.

So I don't feel I have any "autistic gifts" and most certainly not savant abilities. In any case, it is my whole point that people of all opinions and backgrounds and experiences need to tone it down, consider the perspective of the other side, and to look at things a little less narrowly.

After all, some of the deficits of autism (theory of mind, perspective-taking, self-absorption) are also as commonly universal in NTs, except that the deficits are expressed differently and to different degrees (such as, a NT who would pass the Sally-Anne test but doesn't understand why her sister could possibly prefer strawberry over chocolate, or the autistic who fails miserably the Sally-Anne test but considers the differing views and experiences of a cyber-audience - such as me).

I want to add that the last example gives impression that it is meant to categorize NTs as unviersally having the skill of passing the test while not considering other people's different perspectives or autistics as universally being unable to pass the test but being able to see other people's point of view. I was just trying to show how it is dangerous to oversimplify the categories and in doing this did the same. I have known online and in person many NTs and autistics who are the opposite of the example, which was intended to be a randomly selected (apparent) contradiction of the definition of the skills and deficits that NTs and autistics are presumed to have. To show that it is not so cut-and-dried as professionals sometimes make it seem.

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.

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.

12 November 2007

High scores = high-functioning?

The high grades leading to the conception of the individual as "high-functioning" --

Although there are other reasons I would be called high-functioning (that I had no speech "delay"), I can guarantee that had I not had such high test scores and sometimes grades, that I would have been perceived much differently.

People in the schools would have probably paid more attention to the following:

-I rarely completed any assignment in elementary school
-I rarely spoke during elementary school until about grade 5 or 6
-Whenever I approached a teacher, I fumbled for words, could not form words to ask a question (still do)
-At age 10, it took me between 1 hour and 2 hours to figure out how to ask for a pencil.
-I would bang my head when frustrated. (still do, though not nearly as much - once every few weeks or so, rather than dozens of times a day)
-When students arrange in groups, I always sat where I was. (still do)
-I rarely respond to my name on the first or second or thrid time called. (still do)
-When people touch me, I growl or scream, and get away from them (sometimes still do. I almsot always fidget, make some kind of noise, but I have toned down my reaction)
-Perfumes, lotions, body sprays, certain bar soaps, shampoos, air fresheners, strong deodorants, etc. made me cough and eye water and dizzy (still do, but can now tolerate some of the milder ones to be around, but not wear)

Until the third grade, I was an extremely passive student at school when the bullies would mock me and physically beat me and I would do nothing, would rarely mention it, and when I would, I mentioned as if I were describing the items I had for lunch. It was part of my daily routine, and my limited experience and reinforcement from supervising adults taught me that this was normal. I figured that this was just part of life, to be in fear.

My dad responded entirely differently. He fought with the schools for me, though I encouraged him not to, since I didn't think it was "a big deal" as I used a stick to methodically clear the tread of my sneakers of the mud and sticks and worms that protruded in silent imprisonment. He told me it was okay to defend myself, and by third grade, I did. But there were always so many more of them, that my efforts were useless.

So I had some major aggression issues, which had been minor aggression issues prior to school, when they were fueled solely by the bullying from my sister Crystal. Since I was never strong enough to truly do anything about this, I didn't express my aggression on the schoolyard, but rather with a bitter self-hatred, a staunch regimen of self-blaming, self-punishing default of perception of my actions.

Maybe if I hadn't had the high IQ tests, the perfect scores on spelling tests, and the tendency to use a plethora of words that I had no idea what they meant, then maybe I could've gotten some more help with things that now I struggle with, such as laundry, dishes, brushing hair, fixing food, speaking spontaneously in understandable fashion, job interview skills (there's no way in hell we're going to afford even 20% of a college tuition).

There are many things I'm going to need to catch up on, things that I could've learned at a more natural pace if I'd started learning them earlier on. That's one small reason why functioning-labels damage; they bring to mind a preconceived view of what are the skills and deficits of this person. Obtaining services from my school is going hard because of this. I overheard the Director of Special Services talking with another about how I can speak/write well with adults, but have trouble in social conversations with friends.

Actually, I have a number of friends, and I am quite satisfied with how I converse with them. On the other hand, when asking questions, or clarifying needs, this takes tremendous effort for me to convey. When evaluated for speech services, they say that I am needing help with pragmatics and nonliteral language. I do not deny that with these I have troubles, but certainly, more pressing an issue for me is to be able to communicate smoothly, without stuttering, taking 2-minute pauses looking for a word, and these types of things, which will help me to interview well for a job.

Considering that even autistics who get a Ph.D. and are well- to over-qualified for a job find the interview is what trips them up most often, it seems that these concerns should get attended.

Speech is yet to resume this year for me! It is so late; I should contact the school immediately.

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).