16 October 2008

Transitions

Transitions can be difficult.

Especially when you are sick when making them.

I had to make a trip to the doctor by bus, and forgot that you have to pull the thing to make it stop. So I just stood up and started to walk out, when the bus was moving away!

I was falling back and grabbed onto a seat, and finally grasped onto a string to pull, though the bus driver seemed mad at me, saying that "it's not an automatic stop there". Well it's not that I thought that it was an automatic stop, it was that I forgot that you had to pull anything at the stop to begin with!

I knew that autistic people can have difficulty generalizing skills to different places, but I didn't think that I had a difficulty with this. Sure, I have difficulty navigating new places I've never been, but I usually think of the rules as something that would translate well from one situation to the other.

But that's why, just because someone has demonstrated being able to do something once, doesn't mean that if they aren't doing it now that they're just not trying hard enough. Even if the same person was able to generalize across situations before. And I'm pretty sure that I'm going to generalize some skill or other to some other situation in the future. Would that suddenly make the incident at the bus "not real"? An exception (even if there were multiple examples like this)?

My AlphaSmart hasn't been working, most likely due to a malfunctioning battery, so we need to get a new one. So I brought a pen and paper. The nurse asked if I was listening to music at one point, because she was saying and doing so many things I had to keep track of, and I had to make sure she used the not-auto-matic blood pressure device, which I asked just in time. Then she asked if I could hear her or if anybody was there.

I've been working on alternatives to self-injury (which is not because of being depressed, which I am not - it's because I am frustrated), and I like sewing a lot, but the main problem is that it's not immediate enough - I have a lot of physical energy that needs to go NOW. But I do like the calming place that sewing gets me to, whereas things like hitting a pillow or stomping release some of the energy, but the tension is still there. Perhaps I will try combining them, hitting some external, inanimate object instead of myself or other people or other people's property, something immediate that just releases the frustration, then transition from that into something calming like sewing.

Writing the musical Aspielicious still. Plot and characters mostly fleshed out, working on songs a bit more now, getting to the heart of the matter.

04 August 2008

The R Word

For some reason my comment failed to publish on this post, so I'm putting it here:

This is patently offensive, and that this was allowed to go through to production this way is very telling how much farther we need to come before the general public realizes how harmful this is.

And I don't buy that "well, we're not REALLY making fun of disabled people, we're making fun of blah blah" - when you used that word, there's no way that it's NOT about disabled people, even when it's not meant that way, and to be so resistant to change use of a WORD. It's like how I saw a news person on TV say that when they used the word f****t in school, that they didn't REALLY mean gay people. It's a pathetic excuse.

I am autistic, and have had an IQ score of in the borderline range as well as in the gifted range, and have been called retard as well as a bunch of other physical and verbal abuse at school, which was justified by both students and counselors by my "weird" behavior, so I must just "expect" that treatment because I look so odd to them. Well, I can expect it and be used to it, but that doesn't mean it's right and it doesn't mean it should go overlooked.

Whatever the IQ score, whatever someone's adaptive skills or disability or whatever, it is hurtful and completely unacceptable that this passes for acceptable usage. I have know decent, kind people who have used this word, because they have absorbed it and also absorbed the justification that it's "not REALLY making fun of disabled people", but that's why this kind of thing needs to be countered - I don't want even MORE otherwise good people absorbing and using this offensive language, simply because society presents it as mainstream and OK.

The Particles of Oppression

This post is in response to this post by ballastexistenz.

I don't remember the specific moment when I realized the pattern of what was going on. It's mostly consisting of a lot of little realizations, which have been incrementally coalescing into a broader understanding of discrimination, how it applies to me and to others.

One thing I remember real clearly, though, was when I was in grade 7, unsuccessfully pleading to the counselor to let me write an incident report or to discipline the bullies for yet another assault, after all this time of it being blamed on my "odd" appearance, resulting from everything from autism to seizures to lacking designer jeans. And as she started lecturing me on the importance of attending class, I saw in the adjacent room that a girl, one of the very social, non-disabled, girls, was entering the office and asking for an incident report, and handed one right away. Being given the not-so-subtle threat of institutionalization, I saw very clearly that I was fighting in the ring with my hands tied behind my back.

Also that year, around the same time, I was in the office while the counselor talked to a teacher about a student they suspected to be autistic. I had been shading the windows of a building on newsprint, and they talked about his main interest and how they were hesitant of how to approach the parents (they also used his name, though I don't remember and wouldn't breach confidence anyway, unlike the counselor), and I remember stopping what I was doing, and saying "Autistic - that's like what I am" and they continued talking, as if I weren't there or neither of us mattered. I suspected it was the latter.

That year I got the distinct impression, that to them I was naught but a test score, a number whose value had suddenly dropped. It shook me to realize, how they were concerned far more about the financial impact of my absence from school, yet were perfectly content to have me warehoused in offices, and when in class or outside, to be constantly attacked physically and emotionally, and then blamed me for my behavior, both what was naturally my behavior and that which was induced by the circumstances, and say that this was justification enough to exclude me not only from school, but potentially permanently from society.

My parents got calls, day in, day out, about my "bizarre" behavior - mostly autistic behavior and catatonic-type stuff, with sporadic seizures, and talk of medication and institutions pulling on my mind and leading me to pace the floor more vigorously and at later advancing hours with each passing day.

I don't think I told anybody yet about how often I was just sitting in this office or that room the whole school day, or most of it. It wasn't a place for me to "calm down" or anything, and basically had a consistently elevated level of stress, which would spike at particular points, such as pending assault or the talk of the counselor.

At that point, I had little insight as to what exactly about me constituted something "autistic", but I had a definite sense that I was being treated unfairly for these things, even if I couldn't pinpoint them with words, and thus couldn't communicate well about them.

That is something that has been highly deceptive about me - my use of large vocabulary, writing skills, and the fact that I didn't have significant speech delay, hides the fact that I do often have difficulty finding the words and being able to describe important things, even when these fall under the category of what is usually considered simple. "I need a pencil", for instance, at age 10 was a phrase I needed a lot of time to be able to get out, but at another moment I could recite a 10-minute rant about things that happened during the school day, because I had spent the time during the school day to come up with and memorize the words to make this rant.

This is what I think has to do with the decreased reliability of speech for me over the last 10 years, even though communication is much better for me now. When I was 7, or 9, for instance, I knew most of the academic material being taught in class, so for one thing I could afford to "zone out" while constructing scripts and mapping out potential replies and replies to replies and replies to replies to replies, but not only that, I could also come up with the words and then memorize them.

One thing very different between 10 years ago and now: then - rote memory was good, maybe even excellent; now - rote memory is very unreliable.

That, and being in high school and college classes, even for classes I considered relatively easy and familiar in terms of the material taught, rarely was I so familiar with the content that I could afford to not pay attention to four hours of instruction (really, in first grade I really couldn't afford it either, but at that time I didn't care about my grades).

In fact, the only time that I had the luxury to "zone out" to the degree that I did in elementary school, was in high school chemistry, which for me was a review, as 2 years earlier I had studied AP Chemistry books and learned the material for the whole year in 2 weeks - though unfortunately the chemistry class did not cover thermodynamics much at all, which was a topic that I hadn't studied on my own).

In that year I took chemistry, I had been absent a lot (as with most years of public school), and when I got back to school (after weeks, almost a month being absent), there was a chemistry test. We had a substitute that day, so as he handed out the tests, I used my alphasmart to type that I had been absent for the whole chapter (which, while all the material up to that point had been stuff I'd already covered, I didn't know that for sure as I hadn't been in class to know what the test was about).

The substitute said, "Take it anyway".

Now this was quite the predicament. While I could theoretically take it anyway, and had a fair chance of doing well on it, what if it was all stuff I'd never covered before? Then, the teacher would have to make up an entirely new test for me to make up. I started typing on the alphasmart, to clarify this point, and also the fact that I had been absent the whole duration that the chapter was being taught, and the other students (as well as my absence record on the attendance sheet) verified this.

He told took the test back and told me to  write an e-mail to the teacher. So I started writing it. He told me to stop typing, and I froze for a minute, then started typing an explanation of why I was typing.

After a couple minutes he called me to his desk (which I didn't notice he was talking to me until some students around me pointed it out, as he hadn't used my name).

I went up and showed him what I typed. He asked me to spell my name. I did. Then I did some typing, and asked why.

He said it was a detention slip for disrespecting a teacher. I typed "If I may ask, in what way did I disrespect you?" and he said "you didn't listen." I typed about how I am autistic and often don't respond when my name is called, much less when my name isn't used, and that sometimes I need to type things, or I can't get words out, and that when I typed after he told me not to that it was to type this explanation of why it's necessary for me to type.

(Also keep in mind that this was my first year having an alphasmart, so I was not used to defending my right to communicate, whereas most times before this I had had no choice but to remain silent.)

Then at lunch I started writing my frustration about this, and asked a friend in AP European History about the iternerary for the day, and she said that we had a unit test, and a substitute, but she named the substitute she'd had, who was a lady most agreed to be nice.

I walked into AP European History next and guess who was sitting at the desk with the pile of tests?

You guessed it. The same guy as from chemistry.

There are lots of forms that oppression can take, and to those who are so accustomed to it that it is sewed into the daily fabric of their lives it can, at its mildest forms, be taken as annoyance, at its serverer forms, be taken as a "bad day".

The most important lesson to be taken away from the observation of these particles of oppression, though, is that each of them, regardless of size or impact, constitutes an increment of oppression coalescing with the other particles of injustice, however major or minor.

02 August 2008

On Regression and Skills

This started out as a forum post, but I started getting into a big meandering tangent, so I decided to make it a blog post.

I have experienced what's been called regression (actually, they called it "degrading", which is obviously even more inaccurate and offensive than "regressing").

For me, while there's been many times, most times I didn't know how to describe what was going on, when I would lose skills, and mostly believed it when I was told that I was being "unco-operative" or "playing games".

It is quite common for autistic people to have atypical acquisition and loss of skills, and it can also be triggered by overly stressful events, like change in environment or other physical or emotional distress.

I used to be really good with rote memory and arithmetic, and also pretty good with abstract math reasoning, though difficulty with understanding instructions and sequencing made me start out at each math lesson in elementary school as the slowest to learn, but once learned then I would be tutoring others on those same concepts.

I taught myself algebra and calculus when at 10, then I forgot most of it, then I learned it again at 13, along with physics, then forgot most of the calculus, and then learned it again between ages 16 and 17. At age 16, I picked up a textbook about number theory, as well as one about modern algebra.

This was in Algebra II/Trig, and I had for two weeks the ability to instantly solve logarithms problems, that would take an overhead sheet or two and half an hour for the class to solve. A few weeks later, and I couldn't remember any formulas for the next test, and got a C-.

In the two years following that, I've gotten especially good with conceptual math, and can understand the formulas so long as I don't have to remember them or to calculate arithmetic (advanced math is mostly proofs and theorems anyway, so that's no big deal).

I have had varying skills with speech. It varies more on a day-to-day or minute-to-minute basis, though, rather than between months. Though I can usually speak, I usually have to have a lot of time not speaking, not in crowds, stressful things like that. Otherwise, speech will shut down.

Since at school I am around lots of noisy kids, crowds, processing tons of speech, fluorescent lights, having to keep attention to tasks, socializing - it's a heck of a lot more stressful than a day at home with my at-home routine of court shows, I Love Lucy, Tetris, swimming, walking, writing, reading, and Internet. So speech shuts down a lot more often for me when going to school and other such busy places, which tend to put many more demands on me than the non-pressured summer-at-home environment.

More recently, in high school, while overall I was gaining a lot of skills (body awareness, identifying and articulating feelings and sensations, initiating things, socializing, riding the bus independently, etc.), the skills that I lost (reduction in how often speech is possible, arithmetic, increased rocking and other stims, generally being more visibly autistic) apparently caught their notice, even though things like stims enabled me to learn the other things and did not give me trouble.

They also said I was having more frequent meltdowns and shutdowns, but any consultation of my mother regarding driving me to school and picking me up four years earlier, would have roughly disabused them of this notion - my looking more visibly autistic clouded them to think I had increased meltdowns.


Such implication of skills or functioning as universally measurable as going forward or backward, particularly struck my recall, recently, as I read a report from the people who did testing on me.

According to my test-score on the KTEA, I have kindergarten-level math skills. Whereas, I got a B in AP Calculus (I got "A"s on the exams, but did not turn in two chapters worth of homework) last year, and still have roughly the same ability in calculus as I did then, though it is rusty a bit from lack of practice.

Two years ago, when I was about 16, and took the Woodcock-Johnson test, I scored as well above average in math skills for my age. The difference in those two years? From sophomore year to senior year, I have lost most arithmetic skills, other than the most basic (simpler ones like 2 + 2 and 5 - 1 I can still do without writing down or using a calculator).

The testing procedure obviously is what gave the misleading score here - they had to get me to write a certain amount of questions right (I think 4) to establish a basal, then after that however many I got wrong would determine where they stop the questions. If they had done the test from the more advanced questions to the arithmetic ones, instead of the opposite way (as one person administering the test suggested), then it would've been a more accurate score.

I really do not think that I am going on to pursue a physics degree in college when I have kindergarten math skills. Sure, a third grader could outperform me at times tables, but I could outperform a high schooler at physics.

When I was 7, and I was in a class that was mostly kindergarten students, but about 5 other 1st grade students, I remember being the only one who couldn't remember my home address, and being the oldest student in the class, I considered this an embarrassment. I soon got over that, though, taking my own advise about embarrassment.

01 August 2008

Pushing Limits Interview

Today I was interviewed on KPFA (94.1), for the program Pushing Limits, which centers around disability issues, about autistic rights and aspies for freedom.

The program can be listened to at:
www.kpfa.org/archives/index.php?arch=27634

The questions were given to me prior to the interview, as well as displayed on a thread at AFF, and these were my answers I wrote out ahead of time, so that I would have a reference of what I wanted to say. The interview covered some other stuff that I didn't have written out, and I didn't get to all of these points on the program (though I had a lot of time and got to the crucial stuff), so here are my prep notes:

What is autism?
Autism is a neurodevelopmental condition that generally affects speech and language, socialization, and sensory processing. Autistics vary greatly in how this manifests, as some people are completely non-verbal, while others have little to no difficulty with speech and language, but most of us are somewhere in between, and that goes for a lot of traits.

What does neurodiversity mean?

Basically, that neurological configurations that differ from the norm, such as autism, are not inherently inferior to more typical configurations, and trying to make the neurodivergent conform to typical ways of doing things, often creates more problems than it solves.

Why did you join this AFF site?

I joined AFF, for a couple of reasons. One is the community - when I'm facing discrimination, or trying to figure out how to navigate an airport, there's a lot of support, from a lot of people with diverse knowledge and experiences. The main thing is the activism - it's easy enough to say, yes, I'm autistic and proud, there are better ways to improve autistic people's lives than by funding research to make sure no more of us are born - but as it is today, not many people are hearing our voices. That is changing for the better - it's better than 5, even 2 years ago, thanks largely to the work of autistic self-advocates, but we still need to make a lot of progress.

Do you know of the wider disability rights movement?

In my research of autism and autistic advocacy, I started to realize not only how much autistic rights are tied into things like gay rights, but also to disability rights. Some believe that all autistics are disabled or that none of us are, but from what I've seen it varies from person to person, especially when looking at our situation through the lens of the social model of disability.

Even autistics who don't consider themselves disabled, and are capable of employment, even if they have degrees, a lot of times won't be hired because of unusual eye contact or body language, things that have nothing to do with their job responsibilities. Others don't attend out-of-work social events, and are seen as not being a "team player", even if the reason is that they don't see obligation to the events and that they would stress them out too much.

Where would you like Autism Rights to go?

I would like there to be better information and supports to the families of the newly diagnosed, and for there to be less stigma. We should get to a point where it's not considered an undue burden to write out instructions instead of saying them, for instance, or to provide autistics access to communication, whether by using pictures, signing, typing, speech, or any combination of methods. When a parent gets told their child is autistic, and that parent sighs in relief because now they know their child will have access to a good education and services and opportunities and choices for their future, then I might say we've reached our goals.

Also I'd like to see the Judge Rotenberg Center shut down, for their use of electric shocks and other harsh aversives on autistic and otherwise disabled people who are kept there. They have withheld food from people for not getting the right answers on a computer, and administer the shocks in such a way, that the person receiving it has no way of even knowing where on their body the shock will occur. There are many complaints about the treatment of people held at Guantanamo Bay, but when acting in these ways on disabled people in the name of "treatment", then it's allowed to go on for decades.

I would also like more of a venue for autistic people to voice our opinions and advocate for ourselves. There is too much of a trend in having non-disabled people "speak for" people with disabilities, and this even gets reflected in the names of organizations - for instance, the pro-institutionalization group called "Voice of the Retarded", or "Autism Speaks". The people leading these groups assume our voices, and in so doing assume our goals and intentions. I'd like to see more support going towards organizations like the Autistic Self-Advocacy Network, and Autism Network International, which are led primarily by autistics and allies. Autism Speaks does not speak for me.

Does this community here give you positives where the larger society can't meet those needs?

The larger society is certainly capable of meeting many of these needs, through greater understanding and acceptance, which runs deeper than garden variety awareness, though there is one need that I don't think the larger society will ever be able to meet, and through no fault of anyone - there is a certain...recognition, almost, a deeper kind of understanding that you find with someone who's wired a lot more like you than most people, and to be able to communicate with a whole bunch of such people, who aside from being autistic have a huge variety of experiences and interests, there's a certain connection that is hard to describe and impossible to substitute. But as for other things, like acceptance and removing roadblocks to education and independence, society in general is capable of meeting those needs, and I have seen individuals demonstrate this capability. It's just that we're not there yet.

21 June 2008

Innocently Stereotypical

This is from a comment I wrote to an article located at:

THIS SITE


Hello. I am autistic and have done many of these things in this article. However, it's a mistake to claim that most of us are danger to self and others - while that certainly can be the case, and I have been self-injurious, it should be made clear that every autistic person's needs and abilities vary wildly, both between individuals, within themselves (such as good spatial but poor verbal skills), and across time (the gain and loss of skills of an individual over time). 


I do understand the difficulties parents can have, though I think it would be naive of anyone who is becoming a parent to think they're going to have much opportunity for a date until their children are grown. The few times my parents have gone on dates were when we visit our aunt and uncle so they stayed with us while they went on a date. My older (non-autistic) sister had a slew of problems with babysitters, including problems by her misbehaving and also problems of babysitters causing physical and mental harm to her. Even before that, though, my parents have said that before they ever had kids that they didn't expect to have much opportunity to go on dates. 


Also, while I quite understand the difficulties that non-autistic people can have with communicating with autistic people, particularly when unable to speak or type (whether for portions of the time or all or most of the time), I think it would be a mistake to perpetuate the idea that we are non-communicative. Many autistic people have had to learn how to "read" the body language of non-autistic people, and to communicate in ways that are really foreign to our minds (for many of us, communicating words is one of these ways). 


So while I don't fault people for not understanding us, I think it is dangerous to assume we are impossible to understand. Some of my best friends are not autistic, and when I can't speak, or aam having meltdowns, then they have developed the ability to read my body language and understand even when I can't speak, or even in those times when I am unable to type as well. 


These are mostly people who haven't worked with or been around other autistic people, but they haven't tried to understand me in the context of a label, but rather in the context of myself and the situation. 


Usually it's those who are specifically trained to deal with autistic people who have, in my experience been most prone to misunderstand me, and it is typically because they look at my behavior in lenses of deficits and dysfunction, rather than taking on a more global type analysis of the situation - such as by looking at trying to stop me from rocking or spinning, rather than looking at what the stims might mean, and what is going on in the environment. 


So while I don't expect people to suddenly be able to read autistic body language (it usually takes years and years - I mean, it takes many of us years and years to understand non-autistic body language and other nonverbal cues, to state that we are inherently incomprehensible discourages people from trying to communicate with or understand us, sometimes even when we can type or talk this happens. 


Also just feel like pointing out that for things like rocking, spinning, tapping, finger flicking, and other stims, there are many reasons for this - sometimes it's because of stress/anxiety, sometimes it's something we'll do as a neutral state, sometimes it's something we do when happy/excited, sometimes when sad, sometimes when angry, etc. It's more like an unusual expression of the usual emotions, though what has been written that it can be a soothing response to chaotic stimuli, is quite accurate, though in reality it is only a small part of the picture. 


Also, another thing to keep in mind is that the characterization of autism as especially and inherently mysterious is more of along the lines of the statment that we're impossible or nearly impossible to understand - it basically says we're mysterious because we're different and mysterious, rather than we're mysterious because we're different and society doesn't provide a good framework for understanding us more. 


Again, I don't fault non-autistic people for not understanding what goes on in an autistic person, but the image can morph into a damaging stereotype in reader's minds without ever this being the intention on either part, so while what goes on in individual people is of course highly individual, regardless of neurotype, it is somewhat disquieting the frequency with which autistic people particularly get characterized in this way, when people with other speech disorders and people with other disabilities that can make communication difficult, often are not characterized this way, whereas for describing autism in journalistic articles it seems almost standard. 


I think the main things that are important to address regarding autism are the difficulties of obtaining an appropriate (let alone good) education despite IDEA (there are so many legal hoops, and often poorer people such as myself find services impossible to obtain even up to age 18 where I am, mainly due to the functioning-label stereotypes. 


That's another good thing to address, the functioning labels. Usually characterized as high-functioning (HFA) or low-functioning (LFA), Aspergers or Autistic (though really it's all autism). I was diagnosed with the Asperger label at age 10 through the school, mainly because my parents couldn't remember a language delay, and because I could write well. Okay, so since it's all autism, shouldn't I be evaluated for services based on individual needs? That's what I think, but bureaucracy thinks different. 


Mainly why I was diagnosed so late is because not only are we poor (so couldn't even begin to think about seeking out a consultation or evaluation or anything), but also my dad is on the autistic spectrum as well, so when people noticed odd thngs about me, like how I wouldn't respond to my name and would rock and line things up etc. ad nauseum, he'd reply he was "exactly the same way" at my age, and though i have apparently noticed I started speaking late (after doing Internet research indicating a movie relase date - too long a story to get into how that's relevant), it wasn't a concern, as my parents don't believe in there being a strict or ideal "shedule" of development (I don't either). 


However, when attempting years later at age 16, 17, 18, the difficulties I'd had with things like language and self-care all my life, to type these things to people who work in special services, they would nod and disregard me as just a "bright, but shy" Asperger teenager with little difficulty getting through life. Their stereotypes were far stronger than what I was actually learning to communicate these things in words. 


When one already has difficulty using words to explain complex processes and ideas, and they start initiating this communication, it is certainly no encouragement to have your words entirely disregarded on the basis of a label rather than on the basis of need, and they didn't start conducting further evaluations until the last three weeks of school before I graduated (which I nearly didn't, but somehow managed to bring my failing GPA up to 3.3). 


Because I had a "high-functioning Asperger" label based on my parents not remembering a significant language delay and because I could write well, they didn't take into account significant difficulty with things like initiating speech, auditory processing, sensory overload, self-care, multi-tasking, changing scheduled activities, learning and conducting multi-step tasks, asking for help, etc. and even refused to see these difficulties based on just things like stereotypes and budget. 


These I think are the most important types of awareness and journalism, in addition to positive yet realistic looks at how autistic people can be (such as, I wouldn't consider an article focusing exclusively on how some of us have savant abilities, and that this is the reason why autistic people are valuable as is). 


While some when I say without hint of shame or awkwardness that I am autistic, that I shouldn't "label myself" as if saying I am autistic is somehow an insult on myself, much as the word "gay" is often used as an insult, then I think - why is that not okay, when it's considered standard fare for this high-functioning/low-functioning dichotomy to be applied to me without my consent? When they say I'm low-functioning, they're wrong. When they say I'm high-functioning, they're wrong then too. My functioning depends on many things, including environment, accommodations, opportunities, the particular skill that my functioning is said to be based on, and also how I am treated and portrayed by others. 


While this may seem a tangent, it is incredibly important for the observer to be aware of how others might characterize them, and how a reader might unconsciously make decisions about what sort of person the observer is based on pre-conceived notions that they may not even be aware of. As someone of a group whose voices are often dismissed easily by such haphazardly applied pre-conceptions, it is virtually unavoidable for me to participate in such discourse and NOT be aware of them. 


For an excellent look at autism from the perspective of a significantly disabled autistic person as well as how the society perceives us, I suggest you look up the blog ballastexistenz. It's that blog, among some others, that have helped me to be able to describe my perceptions and experiences, some of which have been related here, using the words of the language. It is a useful resource indeed, and she is very good at explaining things she writes.

18 June 2008

Happy Autistic Pride Day!

I started the party last night, and stayed up the whole night. Didn't really have much to do, so I took an online Raven's IQ test around 4:30 this morning.

It was fun, but I must've been so wired on my imaginary coffee, because I got through the first three quarters of the thing in five minutes. Got a 104 (not a high fever though). Not bad - though I still feel foolish for having zipped through it, thinking I was getting everything right. Ah, well. Good to put arrogance to bed, even if the rest of me failed to nod off.

Another way to celebrate: I figured out how to do a makeshift version of smores involving my microwave. I learned from the last time my lesson about plastic in the microwave, and the WRONG way to melt chocolate, so I did some research, and heated up some water, then put the chocolate I wanted melted in a measuring cup and let the heat energy transfer from the hot water to the plastic to the chocolate.

It was a good experiment. One I'm sure any self-respecting hungry chemist would be glad to review. ;-)

Still working on a couple video projects so far. One is part of a thread on AFF, which will involve me talking about various experiences as an autistic person.

Another one is more of a self-contained, mini-documentary (mini both for time length and because of a limited selection of subjects). Also am working on the planning stages for another video project to submit to the possibility of being included in a...er, a London something, I can't remember, except that I'm excited to submit my contribution as soon as it's ready.

Gay marriage! Not htat it's new news, just, yeah, they talked about it more on the news because the licenses are getting issued. Ah. Gotta love California. I wonder sometimes what would be the social-political analogue of the legalization of same-sex marriage to autistic rights.

*shrugs*

Well, don't think it really matters. There wouldn't be an exact equivalent anyway, in terms of nature of it. Though I do sometimes worry about the threat of people who claim that autistics would make lesser parents, which particularly strikes a nerve with me as the daughter of a spectrum dad and me, with hopes to raise (a) child(ren) at some future time.

Watch this page for pics! I will edit them into my post as soon as I get them.

Oh! Boredom has it's better edges. Apparently I'm a chiuwuwa:

You Are a Chihuahua Puppy
Small, high strung, and loyal.
You do best in the city with a adults - young kids could crush you!

04 June 2008

Evidence of Smarm

The school year comes to a close, and on my last day of animation class I animated a short piece called "Evidence of Smarm" that is satirical of the Green the Vaccines thing, Jenny McCarthy, and more. I posted it on YouTube at http://www.youtube.com/watch?v=5fgw45gWew8

Tomorrow to celebrate graduation I get to go to Benihana. I have always wanted to go there, but we've never been able to afford it. So needless to say I am excited.

Also excited about grad night, though I hear that the buses will be crammed with three to a seat. Last time I sat in a bus that crowded was on the way to summer school about five years ago, and I had a meltdown. One of my friends suggested (half-jokingly, I assume) that she bring a dummy with her for me to have next to me.

I think I'll be fine, though, I'll bring a portable music device to listen to music. It's been rough getting up these last couple days, particularly as my parents' schedules have gone haywire in that they're constantly working these last few days. It's so they can afford to take graduation day off, but it's still difficult, and there has been much running late around here.

My mom's boss is extremely NOT understanding of these kinds of things (lately because of my parents' weird work schedules, I have a much harder time initiating movements for getting ready in the morning, having as much difficulty as I used to have about 8 years ago, and because my dad's work changes he hasn't been here in the morning to help prompt me to the things I need to do.

So, in the spirit of the day, I link back to my post earlier this year regarding the vaccines/autism thing. I don't write often about it (I couldn't really do as good a job as say, Kev Leitch or Joseph of Natural Variation), but sometimes I feel I need to put my words (or animated images with audio) out there.

Oh yeah! I published an essay in our school's award-winning literary magazine. It's about my experience being an autistic person in the system.

21 May 2008

Degraded or Just Degrading?

This is something I typed up at school following a frustrating series of events involving the school psychologist.


Today I got to school late, arriving in time for my second class.


Last week.


I had finished up the IQ testing from the psychologist, and he told me that the following Wednesday during 5th block, that I would be in that room with some other people for further testing, and he asked if I liked donuts. I said no (actually I shook my head). They're okay, but I'm trying to get myself off of sweets for awhile. He asked what I wanted, and after long while, I said, "Goldfish". He said, "Nah, we're not going to bring goldfish." I wondered if he thought I'd meant actual fish, but I doubted it by the way he was acting. I guess he had been thinking in terms of sweets. Never mind the fact that I had no idea what they were for, except that it was supposed to be on Wednesday at fifth block (my second class of that day).


Wednesday fifth block I had a final exam scheduled. So I said this and he said he'd take care of it with my teacher. I was so busy double checking that this was going to get taken care of that I forgot to ask if I should come straight to the room or if I'd wait for a call slip. I told my instructor for that class and scheduled my final exam to take place on Monday instead of Wednesday.


So this Wednesday morning. I was still sick in the morning, and because of having part of my tongue chewed up (must've been overnight), it hurt a lot to eat breakfast, particularly as grains of rice would keep going to the side of my tongue that's sore and red and hurts a fair amount. It takes me quite awhile to get ready in the morning anyway, and my mom had to get to work (she was already running late), so I would take two buses to get to school, despite being tired, having a sore throat, and my tongue aching like heck, making it practically impossible to speak with my mom this morning. But I know I've got to get there by fifth block, which starts a few minutes after ten. So I struggle to keep awake and eat my food and leave for the bus, even rushing to catch the right connections so I could get to school by 10. It wasn't easy, considering that normally it takes two hours by bus to get to school, but if the first bus gets there on time (a very rare occurence) and the second bus happens to arrive less than five minutes after I leave the first bus, I can just make it to school in an hour and a half.


So things work out, and I get to school at 10:00 - the start of fifth block. I wasn't sure if I was supposed to wait for a call slip or just go there right away, so I went to his office to find out. As soon as I get there, without any other word or explanation, he looks away, gives a slight shake of the head, and says, "This is unacceptable" in what is clearly an angry tone. I'm utterly confused. I struggled and worked my hardest this morning to get ready, even without someone to help me brush my hair or prompt me to the things I need to do. Even when I was sick and really tired and had to fight most instincts of mine to get to school at all.


I'm about to get a "huh?" in, when he says, "Where were you? Did you just get here? They were here at 8:30. I just asked one thing, and you didn't do it."


At this point, I ascertain that there had been a miscommunication about when the testing thing was supposed to happen. I didn't even really know what it was, or how important it was (it had almost sounded like a mini-party or something when he'd last described it, and I'd speculated that there was about 50/50 chance that it'd be a "hooray for a graduating senior who's using special services" type thing to congratulate my hard efforts to make up so much work from my classes that I'd been sick during, and the other side of that probability was that it was some testing thing that they were trying to dress up by adding a sweet in it as a reward or something. It was very vague, not only the time, the way I'd get there, but also what exactly was going on or if it was important at all. I motivated myself this morning partially by wondering if it'd show how I did on the IQ test, and however much I question the validity of such a test (particularly using the WAIS on an autistic person with verbal difficulties), I have an affinity for data analysis and was highly curious. That was mainly what I thought was going to happen this morning.


So he is clearly mad, and I try to explain that I was told it was during fifth block, which is why I rescheduled my final exam with my instructor to be two days earlier and hadn't brought my taekwondo uniform with me that day, as I was told it'd last the whole block. He then proceeded to say, "I don't know why you did that."


The most frustrating thing was that I wasn't trying to put blame on something, but merely figure out what was going on, but he was very angry, and it was clear that I was stuck: I couldn't participate in class, but clearly I had nothing to do here.


I was upset and didn't want to start cursing or anything to make my situation worse, so I went into the bathroom and called my mom, who happened to be in a meeting, but I did not know what to do at all, and I felt that if I talked to the director of special services or the other teachers that I'd get more of the blame game, as had happened the last time I'd inquired about when the testing would happen, at a time when I was about to graduate in less than a month and nothing had begun and I had been told that it would start two days before, but no call slip came. Both the psychologist and the director of special services got quite noticeably upset that time, and seemed to think I was being too rigid and pushy, while meantime I was still drowning in mountains of homework packets that were finished with exceptions of some in-class notes but that I couldn't seem to organize, and no one responded to my requests for help with this.


Last year, when the blame game had been put so pointedly to me, it had escalated to a teacher berating me about unwillingness to complete a test which did not exist, and that I had been saying I didn't have a pencil with me, and that instance led me to being close to jumping off the second story balcony, mainly because I couldn't handle everything that's misunderstood always being put down to my being autistic because of course non-autistic people can't have communication problems, and my head felt like it was about to explode and I just needed to dull the emotional explosiveness of the verbal abuse that lasted for almost an hour. Fortunately I ran into the bathroom instead. If they can so easily misconstrue my lack of materials for stubborn unwillingness, then who knows how they would've misinterpreted such an act and put it down to being neurotic or psychotic or something?


So I knew I couldn't confront these staff-type people, not at the moment, so I called my mom while in the bathroom, tried to explain the situation, but it was exceedingly difficult, as the morning announcements were playing, my throat was sore, and the room was quite echoey, in addition to a bad connection and my frustrated emotional state. I really felt like I'd been f***d over.


My mom said that she had about ten more minutes to the meeting, then she'd come to the school and help me sort it out, so when I left her phone call, I called my dad at work and briefly explained some of this, though it was hard to get across over a bad reception. It helped a lot to explain the situation, though, as I could look at just what had happened and was right in front of me, rather than including all the past history of negativity, silencing, and ignoring of me that had gone on over the years in my list of "to take care of in the next hour".


She arrived shortly, and after I briefly appraised her of the situation, we went into his office.


He explained the situation in the context of my extended absences, and the fact that these people who came this morning were supposed to be autism specialists who are booked up from now to graduation, so that they couldn't complete the evaluations. He described me as, from teacher reports, having "degraded" - by which I could only assume was measured by outward behavior such as stims and how I act in crowds. Indeed, in the last four years, while I wouldn't describe the gain or loss of abilities as degradation, I have become more emotionally well, more accomodating of changes, and don't seem to have any more or less of difficulties with the comprehension and expression of communicative speech. While I was more vocal (to my impression) in the first couple year of high school, most of this was echoed from TV, or parts of programmed scripts that did not wholly or accurately reflect my attempts to communicate particular things. In the previous years of my life, I would mask my incomprehension of particular speech, or my inability at a particular time to produce non-echoed speech, by recycling a part of a script, or by echoing something, and masked my incomprehension by guesswork and maneuvering. It is only recently that I have come to shed the pretense that I can do more than in fact I can, and now seek help when I need it for instance in academic classes.


In fact, my increase of outward behaviors such as rocking, is a reflection of my increased ability to regulate my stress, and the fact that I no longer hide where my abilities may be less than other people expected them to be, does not mean that I have suddenly have lost those abilities (which I either never had in the first place or which have been tenuously in place).


It is no surprise that he is speculating that autism (by which I'm sure he means the diagnostic category of Autistic Disorder) fits me - I could've told him that when I was 13 and knew practically nothing about the autism spectrum or what it means to me as far as my ability and disability may be. There is significant overlap between the Asperger diagnosis and the Autistic diagnosis, and if the Asperger diagnosis didn't exist then there would not be sufficient differential diagnosis for them to avoid the Autistic Disorder diagnosis (though likely I would've been instead put in PDD-NOS, despite matching the other two diagnoses). It was confusing at first when he was talking, since I'm used to thinking of autism as referring to the commonality among autistics, rather than as a separate diagnostic subgroup. 


WHen asked if she'd noticed this "degratation" pattern, my mom responded that "well, I've been called to the school to pick her up more, than in the first two years". It is important to note that the primary reasons for getting taken home from the school have been: spinning during independent study, sitting under a desk during animation (this one specifically mentioned by the psychologist as an example of said "degradation"), and being sick. None of these things sound like degradation to me, aside from being sick, but that doesn't have to do with autism, so I find it highly unlikely that this might be what he's referring to.


The use of this term degradation (which occurred more than once) intrigued me, particularly as the medicalized term for being more obviously autistic is regression. Not that I agree with that term either (In fact my senior quote had to do with this), but it struck me as odd.


It is so difficult to talk to these people because it isn't just that they misinterpret things about me, which is to be expected in the human world, even amongst NTs. The problem is that these misinterpretations fall under and are condoned by the structural radar of the psychological and educational systems, and one must alter the structure in order to fully understand the context in which these objections arise.


In this context, objections are incredibly difficult. Online, when debating, even if the other person is so misinformed about autistic rights and neurodiversity that they think it means we want kids to bang their heads all day and sit in institutions all their lives, that still is far easier to correct misinterpretations and alter their understanding of the structures, for in this case the other person acknowledges my position exists, even if they deny the existence of my culture and its framework for interpreting the world. In the case of the psychological and educational systems, however, theirs is default and yours doesn't even exist, and it would take too long to explain it, and most are unwilling to hear such a lengthy introduction to my existence and perspectives, whereas I am supposed to take for granted their perspectives and the alleged fact that theirs are superior and that I am to conform to them.


People who are high school students at my high school, whether they're ADD, NVLD, or NT, they are much better on average to understand and be  willing to listen to my understanding of myself, which is far greater than could be the perspectives of a leading autism researcher, for even such a person has such grand misunderstanding of several key areas of understanding autistic people in  general, much less for this to be applied to an individual.


Perhaps it is that people whose temperaments are more inclined to not reach into another person's perspectives, but are rather much more socially adept when among those whose brains work roughly similarly with regard to social perception, are gravitated toward this field. Certainly the structure of the psychological/educational fields encourages this thinking, and if it was not before present, then surely during this stage it becomes cultivated. One cannot work within such a restrictive system without being altered somewhat by the experience in their perceptions of the individuals with whom they work, particularly if their first acquantaince with such individuals is through this course of study and practice.


This is what is unacceptable.


Note: When transferring this file to the computer, I also got this weird little malfunction:


esrucues,oni asetheot sackowlge mypostiet,ee ifthed e xsece f mculuaditsfraw  ierpeti t lInthecasethe psychologica aneatnlsysmshv irs euays desnt eni, n iwoud k to l eainit,andoaullig th hlenthyintdity eisnen erpev rea mppoed o erantd teireevandthealeata thisresperorda torm o temPeplewhrischol tudtwhertherAD,ND,o noe otae heae mhtr on aerae turn nd e  ilg tento y ueadinfs,wichis r ern old   eetivs o a agts reearerfe suh apron as ucran idertndi srlky aeasfdtingauttpln  enel,ules f s t e aplidto individual.


I think I will use it as the basis for a language I make up. :)

----



23 April 2008

Meme-orable

Abfh tagged me.


5 Things in my bag:
1-A ruler that also functions as a calculator
2-A print card for the local community college
3-Bubbles
4-a Straw
5-pamphlet from the Mars Society

5 Favorite things in my room:
1-My Invader Zim figure collection
2-Animator's clay and some figures made therof
3-my two tarantulas
4-Globe
5-Telescope

5 Things I have always wanted to do:
1-direct a documentary
2-establish a school primarily for autistic kids
3-publish a book (or two or three - some autiebiography, some science fiction and some mainstream fiction)
4-get a Ph.D. in physics (emphasis on astrophysics or particle physics)
5-make an animated cartoon

5 Things I am currently into:
1-astronomy
2-animation
3-writing (especially novel and sitcom)
4-Japanese language and culture
5-making up my own language (I invented an alphabet yesterday - now I just need the words and grammar!)

5 people I'd like to tag:

1-Marla
2-Casdok
3-abfh
4-Bev
5-Big Time Sysnaesthe

Consider yourselves tagged! :)

20 April 2008

Bullying: How the "Other" Grows Up

This is from a comment I made on a blog about bullying. It describes some of the physical violence done to me (hence the angry tone), and has a few expletives. If you believe that all bullying is "just a part of growing up", "makes the victim stronger" or that "victims just ask for it", then please, by all means, read this.

I was bullied throughout from kindergarten through 8th grade when I transferred to a charter school whose students are more accepting. Mostly the kids made fun of me because I'm autistic and I don't wear "popular clothes" - just jeans and a T-shirt, can't afford anything else. One girl harassed me for not going to church, which I didn't at the time. There were many rumors that I was a lesbian, which was true but I still denied. They also made fun of my seizures. The worst thing about that year, though, was that the physical violence elements of the bullying I'd experienced all my life intensified much more compared to previous years.

There would be usually five boys ganging up on me, beating me and at times trying to rape me. Luckily I could get away at that point, but it was pretty awful. They would slam my head against the water fountain and the sinks, and push me to the ground, and one time because of this for a week I could barely walk (all the while I had to listen to my sister complain that she needed a chiropractor because of pain from washing dishes). They made fun of my special interests, which at the time were quantum mechanics and UFOs. One thing I learned at this time is that when you're dealing with serious bullying, even when it's still just at the verbal stage, ignoring just makes things worst. Maybe it works with little kids just making typical insults, maybe they tire quick, but I know that I spent three weeks not even acknowledging them, just looking through, and it just persuaded them to up the ante, so to speak, to try to provoke me.

Running away and fighting back were my best bets, though as I was out of shape running wouldn't do me much good (in elementary school and junior high I most often did not get to participate in PE because it was easier for the school to sit me out than to deal with the bullies on the field, and I was in adaptive PE anyway, and motor tasks are difficult to co-ordinate). Fighting wasn't much good, either, since I hadn't been formally trained (though my dad did teach me the right way to punch) as we couldn't afford lessons, and I wasn't nearly as strong as five boys.

When I reported these things to the office (I would litterally spend a couple hours out of class each day in her office pleading to have something done about this, but I was refused the right to file a report, and she would just ignore me, lecture me about the importance of being in class, or tell me it's all my fault because I rock, walk oddly, have seizures, and don't wear designer jeans. Yes this is really what I was told. And they told me I shouldn't defend myself because it doesn't get me anywhere.

Well, as long as they're taking me down, I'm at least going to cut them down a notch too. Cussing at a jerk can be all you have when they otherwise have grabbed so much control over you. Throwing things at them, hitting them, threatening them, sometimes it's all you have to keep yourself from lashing out in more drastic ways. It's been five fucking years and while I no longer have flashbacks and nightmares about it, it still makes me angry.

An exact quote from the counselor: "There are three things you don't talk about: religion, politics, and space aliens". The visiting counselor agreed with a nod and an mm-hm and then added, "Abortion, too". She echoed, "And abortion." These are the people who are supposed to be advising me?! In the United States of America? Fuck that! It's not even me who would bring these things up; I rarely spoke at school before high school, and approaching someone I don't already know to expend the huge amount of energy it takes for me to talk; these people are just unbelievable. They broke into my locker and saw books about UFOs which is why they knew that interest, and I usually had physics books with me.

When I was being bullied ferociously in 7th grade, I told those guys in a serious, yet shaky voice that I wanted to fucking kill them, and that I could do it, too. Not a wise thing, of course, and if I were an adult and knew that someone had said that I would contact the authorities. But because someone says that, while it's wrong and warrants attention, doesn't mean they are the bully whose "fault" this is. I in no way antagonized those kids throughout my life, yet I was driven to that point (though fortunately I was able to resist actually doing something like that - I doubt that I could've done it, even if I had access to a weapon).

It's not okay when you saw a rape victim had it coming because she was attractive, or was in a certain area. Likewise, it's not okay when you blame bullying on the victim because their behavior was odd.

To people who think it makes the victim stronger - when you see and hear people who became stronger for their experiences, mind that these are the ones who survived and who have now overcome it to the point that they can be successful. That doesn't mean they represent the reality of all - or even most - people who are bullied. The only purpose that bullying and discrimination have served me in my life is to motivate me to fight against them.

And, while to some extent "bullying" (as in insults and general nasty things) is a part of growing up. However, being terrified to go to school (or other places, and rightly so), living in an environment where fear and intimidation are your only tutor of social skills, and where you are consistently, sometimes even quite blatantly, told that you are an inferior kind that deserves this treatment - no. This is not "common". This is not "encouragement". This is not "natural".

19 April 2008

ON Growing Up One Arm in the Straitjacket

There is a spiral, a pattern that embeds itself into the order of the natural world. A mathematical oddity. An improbability. The Greeks saw in it truth and beauty. Today it has applications in the stock market. To most, it is just a pattern unfolding in a patch of dead, scattered sand.

The sand is what gets me. It’s what draws my attention, as does the lone paperclip that catches a small bit of light as it rests in the slight shadow of the nearby desk. The pattern, the golden spiral, is to me the ripple of an ocean wave transposed to a dream. A pure expression unbound by linguistic ambiguities, one that transcends definition and yields to unadulterated communication.

I spent most of my childhood afternoons in class gazing in various directions. Sometimes up the front of the classroom, sometimes the window. Sometimes a wall. Didn’t matter, really. It was the gazing - the thinking - that was the point. However I managed to elude the misperception that I was disengaged from reality as long as I did remains as mysterious to me as is the hidden meaning I am supposed to extract from such written expression as “;)”.

If my teachers didn’t notice anything unusual, my sisters sure did. And while not saying so outright, my mom certainly must have noticed, for all of her exasperated attempts to understand why “simple” things were so much more difficult for me than other things, things that would typically be considered complicated and challenging. I quickly ascertained that I was some different kind of person, a foreign person within the only home I’d ever known. Culture clashes were inevitable, but it was hard for either party to not feel personally targeted, as there was no clear physical indicator that my culture even existed.

Before anyone ever uttered the word “autism”, I was keenly aware that people like me were routinely shoved into institutions under the premise that their lives were not worth the trouble of accommodating them independently, and that such effort would be wasted on individuals perceived to be clearly incapable of enjoying it. I still remember watching a program on TV in the early 1990s, and all the gloom and doom predictions people made for the people featured, the people I pointed at and said, “They’re like me!” with childlike enthusiasm. My mom corrected me, said that I wasn’t like them, as they were severely disabled and would bang their heads. I wondered what made me so different from them.

Whatever my perceptions, the message was clear: there is a set pattern of development that typical children follow like a map with only one road. And if these milestones are not met within given ranges, then that is sign of disease process. Not a sign of having a different sort of body than people expected, not a sign of having a different sort of mind. Not a sign of difference or disability, but of disease.

This as the backdrop of my childhood, I made the unconscious yet purposeful effort to watch myself every second of my life that I was in public. Make eye contact, no matter how much it hurts, just do it. Explaining that the lack of eye contact means you’re paying attention isn’t good enough. No hand gestures, either. And don’t rock, but talk even if it pains you. You have to walk a certain way that is unnatural and difficult, you must keep your head at a proper, normal angle, and don’t let your mouth hang open. If you don’t keep this up, you look retarded, and you know how much your peers belittle the mentally retarded, as if they’re somehow lesser. If a loud noise scares you, or an offending touch hurts you, you cannot shout or move away. You must bear all intrusions, no matter how violent, with silence and good behavior.

I like to try this thought experiment with people who don’t understand how stressful this can be, people who think that if someone is capable of imitating “normal” behavior, that they should act that way all the time. Now imagine that you are a child, and I am a doctor. A teacher. A parent. I tell you that it is absolutely imperative to rock back and forth for most of your waking life, despite your never having had the inclination or the thought to do so. Although too much is forbidden, you may talk sometimes. But only on one subject, and you must never look at someone’s eyes, or even their face. If you do, you must stare “through” and not “at” – whether or not you actually understand this distinction. And whenever you screw up, I am going to correct you, and withhold rewards. After all, these things are good behavior. Only good behavior gets rewards. Bad behavior never gets a reward, because we don’t really want to see that anymore.

When I advanced to seventh grade, the reward for good behavior changed from approval to safety, as if the junior high were operating as a miniature institution. While the total population of the institution was about 500, only a small handful of us were held captive to its most prized tenet of conformity beyond possibility. If someone threatened my life, it was because I could not afford designer jeans. If someone stole from me, it was because I look strange when having a seizure. If someone beat me up, it was because I failed to acquiesce to the moral superiority of my verbally abusive peers, but rather entertained the foolish thought of defending my dignity.

I sometimes like to think I have permanently overcome the flashbacks I still from time to time experience, that I am strong enough to stare my memories in the face as they creep along at my heels and to say “no more.” I sometimes like to think that once these personal emotions are resolved that I have defeated the problem. I sometimes like to think that my experiences were aberrations. As I face school, public transportation, job interviews, dating, adoption and parenting, though, I cannot ever ignore the fact that what has happened to me is a mere appendage of a wider phenomenon. Regardless of my own circumstances, through the collective experiences of the autistic community, I will always have one arm tucked firmly out of sight in the straitjacket.

17 April 2008

A Mild Form of What?


(Picture is of a book cover, which reads: "The Bisexual Syndrome: A mild form of gayness" and has a review quote that reads: "A fascinating look into the world of the high-functioning homosexual.")


As per the forecast of the Autistic Bitch from Hell in this post.

26 March 2008

My Neighbor Autism


When I describe the ways I perceive things, or the reasons why I misunderstand non-autistic cues, when I react to painful stimuli or have trouble understanding something "simple", people will often point to my invisible neighbor autism.

They may give that "ohhh...I see" look that tells me they really didn't see, but rather were imagining, my neighbor autism. They may shake their head, get frustrated, or walk out of the room to leave me to my devices because they don't want to deal with someone who is self-injuring. Then later when talking to a friend over a cup of coffee in the lounge they may say, "Do you know who her neighbor is?"

Sometimes, they say, my neighbor moves in, and then in a hushed, whispered voice, say, "She lives with autism, you know."

The fact is that I have no neighbor called autism. But that is not what disheartens me most. It is the fact that people tell me - and not always overtly - that I ought to be ashamed of that neighbor. There are a few things I would like these people to know:

It is not more politically correct (or dare I say - Appropriate?) to address autistic people as "persons with autism". The rationale for this is that in using "person-first" language, you are not defining the person by the fact that they're autistic. It is supposed to be an acknowledgement that - yes, we really are human just like everybody else.

All this sounds very nice and good and all. But it's not that simple.

That and besides, political correctness means nothing if that's the only way you attempt to respect someone. For instance, it doesn't matter if you say "mentally challenged" or whatever is the latest term in preference to retarded; if you treat the same people as a nuisance or an embarrassment then your two cents of political correctness have been wasted.

The fact is, using an adjective descriptor of a person is not itself an insult, a denial of the person's humanity, or somehow supposed to define the entire person. It can be used that way (as in the man who sees a woman upset and says sneeringly, "typical female"), but that's not how it's usually applied. It is usually applied just as a plain descriptor ("I am female", "I am gay", "I am tall", etc.). The fact that the average person would have a much larger reaction to "I am autistic" than to "I am tall" mainly has to do with the fact that most people are not familiar with autistics and the fact that the only knowledge most people have of autistics tends to be skewed to the highly negative perceptions.

It also alarms me that somehow by separating autism from a person that this is supposed to reaffirm the individual's humanity. Perhaps this is part of the ghost of refrigerator mother theories and mythic interpretations of autistics as changelings. Our differing body language, our misunderstanding of non-autistic social cues, and the idea that we are autistic because of cold, un-nurturing mothers, have all been incorporated into the distortion that depicts us as less human.

But the best way to fight this ignorance is to inform people that because we act different doesn't mean we're uncaring or indifferent to people. Not to claim that our imagined neighbor autism really is something to be ashamed of.

24 March 2008

The Burden of Children's Health

I was watching the news when they started discussing people who elect not to vaccinate their children, with mention of the fear that vaccines may cause autism.

First of all, it made me sad that people are so uninformed and/or misinformed about autistic people that they'd rather not have one of us as their kids.

Second, I had to fight my natural inclination to blame plain, ordinary human stupidity and paranoia. The fact is that like the burden of proof that exists in a court of law, there is a burden of the health of not only our children, but those of future generations. We each carry a bit of this burden in the responsibility we exercise in our decisions, but there are others whose burden in protecting children's health is far greater than any individual alone.

Yes, the people who decry the vaccines for this connection they claim to have undeniable proof of, they carry a large portion of this (ir)responsibility. I hate it when people lie to other people, particularly those people who lie to parents, teachers, and others who have authority over the lives of children. While I am sure that some of the main anti-vaccine people actually believe what they are saying, there are many who are abusing the concern parents have for their children and using the lack of good information about autistics to this end.

In reading this blog post, I have come to a startling realization: the alternate vaccine schedule promoted, which omits vaccinations for measles, mumps, and rubella (doesn't even include them separately), in leaving children unprotected from measles, would result in 1-2 in 1,000 children infected to die of measles. If every child (or even a majority) weren't vaccinated, that would be a lot of kids overall. Maybe to the anti-vaccine people this is rare, but would these same people consider telling that same thing to each parent of the future children who would die this way?

Likewise, any individual or organization takes a larger share of the burden when they put out negative and misleading propaganda. Being autistic is not a ride on the merry-go-round (however many times we may spin!) but it is not a hell either (though oftentimes we are told it so much that we become depressed and begin to believe that some monster called autism is the cause of our sadness). And showing purely the negatives, and misinforming people about autistics leads to a parent fear having an autistic child more than a dead one.

For even if it was a well-accepted, completely verified fact that the vaccines cause autism, autistics can and do have good quality of life (which is remarkable not because we're autistic, but because the majority of autistics have been abused). A dead person cannot have a good quality of life. There is no opportunity for life. And there is no way to mitigate the disadvantages of being dead.

Funds Lost

As you may probably know, recently Autism Speaks sent a notice from its team of about 30 lawyers to a 14-year-old autistic advocate who had set up a parody website of Autism Speaks. One of the things they were suing for was funds lost (in the amount of $90,000, if I'm not mistaken).

Aside from the obvious irony of an organization that purports to speak for autistics suing an autistic person for speaking out, it struck me as hilarious that they were claiming they should be reimbursed for funds lost. Even if the amount they claimed weren't so ridiculously high, isn't the whole point of speaking out against an organization to persuade people not to support it (which would include financially)?

Yeah, funds lost is kind of a goal. Well, funds lost isn't quite specific enough.

Funds redirected is our goal.

I would be fine with the continued existence of Autism Speaks if they stopped funding genetic research and seeking a cure (that money would be much better spent on services that help autistics today, rather than never). And a name change would be nice, too. Unless they had a significant number of people on the spectrum in positions of real power to guide and direct the organization, they shouldn't claim to speak for us (anyone know of the organization Voice of the Retarded, a parent-led organization that lobbied for institutionalization).

Basically, to claim that your organization deserved compensation because someone else spoke out against your organization and thus people have been persuaded not to donate to your organization, would be like if George Bush sued that website that compares him to a monkey for "votes lost". Absurd, isn't it? I thought so too.