Required Medical Leave PT 2

OK, even when I trimmed it way down, it was too much for blooger to accept in the commets. So here I post it (I aslo expanded quite a lot, beyong just responding to the commets.

(This is an expansion on the topic of Required Medical Leave rules, as addressed at my last post.)

Club 166: I agree, that struck me as well. and I have wondered at the back of my head if my mentions of autistic-self advocacy (as opposed to pity awareness) have stirred any fears in the administration at the top, whether this rule is a reflection of that or the implementation of it is a reflection of that culture. My first version of my post addressed this, but I lost it somewhere on my computer.

In any case, even if they won't let me pursue my studies there (they will probably be especially taken aback when they learn that I am intending to become a doctor - from this point on I will probably be judged from the standpoint of how they perceived my functioning at the time of my second quarter at college, regardless of all the cooking and cleaning skills my parents are going to work with me on).

While I will try my best to minimize communication between disability services and professors, which is too bad that I feel compelled to this but that's the world, the community I live in, there are many misconceptions floating about me, due to the very jagged skill profile I have in almost all areas academic, social, and self-care, and the way that people resist these apparent contradictions and try to make the picture fit neatly in their heads.

One thing interesting, is that when my skills fall apart in other areas (such as, not folding the laundry and not having a place to store it so it's everywhere, the trash isn't taken out since I don't know how to sort it, less hygiene), then it's my speech, academics, and so forth that fall apart first, but I ramp up the socializing and other leisure activities.

So it was interesting, on the ABAS, when comparing my ratings to the disability services director, that while most of the ratings more or less agreed, when it came to leisure, mine was much higher than her rating (like 9 or 11 compared to, say, 3), as my extracurriculars like the gay rights and disability rights clubs and my social life were the only things that were strong at that time, aside from my obsession with Cabaret and my own musical I am writing (Aspielicious).

It made me wonder: she knew I was active in the clubs and knew people in them and interacted with them, so - did she rate me so low, on the assumption that someone whose life skills were so much less than most people my age have mastered cannot attain a satisfactory leisure life?

Is it that someone who listens to the same musical soundtrack over and over MUST become bored with it just like someone who is NT probably would in that time, and only repeats the activity because they have a joyless compulsion towards it, rather than it giving them true pleasure or instilling any passion? (That can be true of OCD, sure, but this is neither here nor there, and I have never been identified under that umbrella.)



Adelaide Dupont:

The GAF was determined based on the ABAS score (I answered a questionnaire and so did the disability services director). I took the ABAS with my parents, a teacher and I believe a neuropsychologist rating, the month before graduating high school, so if they give me trouble over it, we can try to dig up that paperwork and show it to them (it ought to be a higher score since I wasn't living alone then - while it doesn't really prove anything other than functioning fluctuates that anyone worth their salt in the educational/disability fields ought to know, it would be worth it to demonstrate that I am not in developmental stasis, especially after my parents have had the time to teach me some other life skills so that I can manage better on my own. (I'm going to ask my mom to get me a flip fold!)

As for half-truths, for instance - I don't have problems with all fragrances, but it seems to have to do with how mild it is, or how familiar (like an orange fragrance lotion). Also, there were things like when I mentioned bullying in junior high, the report describes classmates locking me in a room for hours, when I very clearly stated it was a counselor (whether it was typo, memory fault, wrongly noted in haste, or whatever - it's not that the authors of these reports are deceptive, its that details, sometimes major ones, get misunderstood or changed, and the problem arises when such a report is used as more than just an impressionist painting of the state of living at the time for me, but is used as a basis for future decisions about my life).

Another example of half-truth, for instance, is this little gem of misinterpretation: according to the report "Melody wanted it known that she cannot do 'stranger talk'. When someone approaches her she doesn't know or barely knows and begins to talk with her she becomes totally overwhelmed. Then that feeling of being overwhelmed gets attached to layers of more anxiety based on stimuli (color, smell, noise) and Melody has to stop what she's doing and try to recover. At times the ending result is she has to return home when she can and recover."

What this is likely based on, was when I said that I have much more difficulty initiating speech with strangers and people I don't know well, than with people I know well, and may try to wait or get the other person to initiate speech first, unless it's some situation where it's very important for me to initiate speech, and that in those cases I have to pay more attention to the surrounding senses and this is why I tend to stim more around strangers than with people I'm close to, so that I am able to recover my words for conversation. So I may rock or flap or spin or make noise like echolalia or whatever is most practical at the time.

I may be more fortunate about how these reports are taken, since it states near the beginning that I've never had an IEP, a couple times, even though I had an IEP for a couple years, and a 504 accommodation plan since I was 10 or 11 from the ASD evaluation that occurred between the ages of 9 and 10, and we have copies of the papers that prove it. Most reports that have the similar half-truths about people's lives do not have such a glaring inaccuracy, so a person disputing a therapist's report may be considered to have much less credibility when critiquing the report to other professionals than I would have, and even I may not be taken seriously since it could be blamed on "me not being clear" (but then again, so is just about every other statement and interpretation made in the report about me - just as prone, if not more, to biases and miscommunications on mine and the psychologist's part).

So this report certainly has its valid uses, namely its original purpose of identifying services I would be eligible for, and the diagnosis, but the problem is that in order to have the director of disability services participate in the survey of ABAS, I had to sign a form that information could be shared with her (or so I was led to believe anyway). With this new rule implemented and what I perceive to be a growing climate of fear towards people who act atypically, and an impulse to boot them off campus instead of connecting them to services that can help them, as happened with me, all too slowly.

Myself, I was studying physics, planning to study theoretical particle physics, but I lost my passion for it, and decided to pursue my true love, despite all the flak I am sure to face: medicine. See, I've wanted to be a doctor since at least junior high when I realized what it was really like (and not like the silly TV dramas), and especially catapulted towards it when I was 16 and a neurologist presented to our school (I was in the bio-medical club) and described his experiences as an intern. I remember thinking, "Wow, with my lack of social life, I could spend all day studying with some breaks to leisure so I can maintain sanity!"

Unfortunately, in the report, they wrote that "it seems clear that teaching would be a very challenging and unlikely career path...as it would likely depend heavily on her weaknesses" I do agree that it would be challenging and unlikely, but for entirely different reasons. They think me very rigid because I like routines and derive great pleasure from them, but I am not disturbed when they are broken, as I was when I was a child, and I have always loved spontaneous breaks in routine, if I had a moment's notice or was in control and it was not an unpleasant activity I would actually enjoy the spontaneity (forever an odd autistic - spontaneity-loving routine-making autistics are out there!!! :) ).

So while I think that, provided that I learn life skills more (and even the report acknowledges that I will likely have "a significant degree of independence as an adult" with skills teaching - the phrase "as an adult" initially gave me pause, but given that I was scarcely 19 and referred to as a young woman elsewhere, I don't think it is being suggestive of a perception of youth, even if such perceptions exist in her mind), so that I can be successful on my own, that I could be successful as a doctor, I now hesitate to consult with academic or student advising about things such as course selection (due to my extensive illnesses - really I think that rather than the illnesses the main thing that kept me out of school was the crisis I was going through, in wanting to pursue a subject where people wouldn't have confidence in me - people almost expect autistic theoretical physicists these days, but not autistic medical doctors, who work clinically rather than in research).

I think I can manage on my own mostly, correspond with professors (for some reason I am generally more comfortable contacting professors by visiting their office in person than by e-mailing, whereas for certain social and professional interactions I am more comfortable in e-mail).

However, I do think that the prejudices will be difficult to manage - I started out the year out and proud, faced certain consequences, some expected some unexpected, and now I plan to lay low around the professors, yet wish to continue advocacy work and encourage other neurodivergent students - I feel myself caught in a vortex, a paradox of ideals and aspirations, seeking out a pattern for reconciliations. Odd that in this age of acceptance my peers have lost the subtext.

No Shirt, No Speech, No Service?

Well...I was wearing a shirt. It was pretty chilly that night after all.

In the recent times at the cafeteria, I have had difficulty with telling what's what on the menu. Given that I am vegan with a probable dairy allergy or intolerance, this can delay me a bit.
So we, as part of the student disability organization, put in a request for individual labelling of all the items.
Which has not come to pass. So I will put in another request of this.

But in the meantime, what was supposed to happen if I was confused about
what an item was, is I was supposed to get help from someone there.
Since I often can't talk in there, I go near to somebody and point to
the location, and use body language and such. Which usually takes a long
time because I have a hard time identifying somebody who works there,
but once I see them then they see me and help me and no problem.

However, today right from the start I was in front of somebody working
there (who was the cashier working, so busy I understand, but still
there were several times when there was a lull of people coming in and
she went to do other things such as going to the coffee and wiping
tables, walking past me, giving me a look and then passing me by).

I start to think, after 10 minutes or so, that in the off chance she
hasn't seen me standing there, and after 20 minutes try to exaggerate my
expressions and flapping and rocking more. Now by this time I didn't
even care about the dessert anymore, but I just didn't want this whole
"ignoring me to go right past me and do tables and stuff"
to go on.

After about 40 minutes when she does acknowledge me (after having walked
past me, cleaned the dessert table I was standing right next to), she
said, "Okay, what do you want?" Indicating, aside from the eye contact,
that she had indeed seen me trying to get her attention.
I pointed to the dessert I was interested in and to the sign that read
"vegan" to the side of it and postured myself questioningly, as I wasn't
sure that it was referring to that dessert or not (there was no board
listing the desserts tonight).

She said, "Yes, you can have a dessert if you want."

And walked off. Then she said to another adult there, "She's always
acting like this."

Then later on she kept going to clean tables and glancing at a newspaper
as I kept trying to get her attention, using the body language of the
sentence of "But that doesn't really answer my question" and continuing
to flap my hands and look and point at the dessert table and the "vegan"
sign, as well as to look in her direction.

When she finally did come back, she said, "What do you want?" and picked
up a dessert. I pointed at the dessert, then pointed at the "vegan"
sign, and then she said, "Yes, it's vegan. Do you want it or not?" and
held it in front of me. I took one from the table top. She then said,
"You have to talk louder so I can hear." I then touched my throat and
moved my hands around so that she may understand that I was unable to
speak, not speaking softly. She then said, "There's nothing wrong with
your throat." Which A) she didn't know even that because I didn't talk
in the greenery today and B) obviously she doesn't know about interacting with autistic people.

I'm not sure what to do except for there to be better understanding
among school staff (including dining venues) about how interacting with
someone who's partially non-verbal doesn't mean you have to freak out or
think that they're non-communicative, particularly when clearly communicating
about something this simple. I hate this myth that NV = not
communicating, and even though I'm mostly verbal I run into it a lot.
It's not that you don't notice that the person who is rocking and waving
and pointing at the table and looking back at you needs help - it's that
you think their method of communicating their need is lesser, and
therefore not in need of attention. That's exactly the kind of attitude
I'm constantly up against, and the kind we need to educate out of
existence, so that we prevent consequences that are far more serious
than waiting an hour for a meal or a dessert.

Note: In another correspondence about this matter, there appeared to be a bit of misperception about where my complaint lies. I wrote the following to clarify:

This kind of dismissal of nonverbal communication and derision of the individual who communicates atypically, has led in the past and if not address will continue to lead to, far more serious repercussions to the individuals experiencing these attitudes (some of them from a non-school setting such as institutional abuses, whereas many, many others may also occur in a school setting). It is like a parallel to a woman who is forever considered a "little girl" and not considered capable of (or deserves protection from) making decisions for themselves.

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.

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.

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!

What Breed of Puppy Are You?

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.

Behaviorism on the Playground

If I were to write that parents were specifically instructing their children to be agents of social control to enforce social norms among their peers, I would have accusation after accusation leveled against my sanity.

They would call me paranoid. And I'd likely agree.

While perhaps a grand-scale conspiracy to purposefully train children to behave "typically" and suppress creativity or originality of expression would sound scarier, more Orwellian, I would argue that the system we are placed in does just that, but is more dangerous, as it is not specifically mandated. If it were specifically mandated, then people would recognize what it is.

Kids grow up with the ideas that some kinds of people are inferior. Some kinds of people just don't have a future. Some kinds, even if the individual doesn't have any specific problem with them, are "just begging" to get harassed, "just asking for" a theft. A beating. A rape. A murder.

Some have asked me why there is a need for an Autistic Rights organization, such as the one I have established at my school with the help and inspiration from my friends. It wasn't until the seventh grade that I started to catch on to the fact that this kind of abuse is inherent to the institution.

I started to understand why I had been refused the right to file a report for the attacks committed against me, and then a year later, when expressing my anger at having been refused, given the token privilege of writing a report which would have no real legitimacy, as it was filed approximately six months after the actual incident. "Too bad that you didn't file it last year, or we could've done something about it."

Ha. What a fucking crock. However hard it was for me, even though I had to spend day after day going into the office, being unable to summon words to speak (I had no means to type at the time), and then after a week of sitting and doing nothing, missing the classes which would only bore and torment me (the offenders were in nearly every class), I finally asked to file a report, when I realized this might be an option when seeing a girl come in to file a report after a boy said some nasty things to her, and being flatly refused, even though I told her that the offenses included assault and sexual harassment (in retrospect, sexual assault would also apply).

So how was the response? I told her a couple of the tame things that had been said to me. I told her there were some worse things, but I couldn't say them. She set her pen to one of the pink slips used to call students out of class, and once she had progressed to the fourth one, I asked what she was doing. She replied she was calling them in here, to let them speak for themselves, face to face with me. In utter horror, I fled. Ran out of her office, wandered for who knows how many hours around campus, unable to even find my way back anywhere at this point.

This same counselor was the one who told me that, because I rocked, because I had seizures, because I didn't dress in popular clothing (hand-me-downs, such as plain t-shirts and jeans that hardly fit, don't exactly count as popular among teenage girls, I suppose), because I was rumored to be lesbian, because I didn't talk much, because I was politically considered radically liberal (only because most of the population of the area is very conservative), because I had an odd gait, etc. etc. These were all reasons she told me I had to expect getting beaten up and insulted.

"I never asked to be popular. I just want to have what I am legally entitled to, and that is a safe educational environment." Ignored again. Not that it should have surprised me. She is, after all, the same counselor who told me, "There are three things you don't talk about: religion, politics, and space aliens." (UFOs were a special interest of mine.) To which the other, visiting counselor from the high school replied, "And abortion."

Such strange advice, considering that, outside of a close acquaintance or two, I did not in fact discuss any of these. Though, the first year of high school, I prided myself in engaging in intelligent conversations with my peers on these as well as a number of other subjects. But when it comes right down to it, when you rarely talk, and you never approach people you're not well acquainted with, you don't even get much opportunity to go at length on discussing interests. The only people I got to do that with, really, were my family.

If someone told a woman, "It's your fault you got raped because you're attractive - you have to expect that kind of treatment when you're attractive" wouldn't there be an outrage? Likewise, isn't telling someone that it's their fault they've been assaulted because they're autistic and look weird as much an outrage?

The problem here, is that the social control here implemented is implicit to the people and the institutions that run them. There needs to be watchdogs for this kind of discrimination. Every person should know that their rights in the school or in the workplace or out on the streets should be secured, regardless of neurological status. Such a thing should also cover people who don't have a diagnosis, but who have been made to feel that it is their fault for not conforming.

The main thing to get across here is that there is a difference between a person being unpopular and a person who is having crimes committed against them because of that unpopularity. Such a policy as I wrote isn't some attempt to make everybody feel like they're accepted by everybody else. Such is a noble goal, but it is not a goal that can be attained by passing a law. Attaining acceptance is the job of advocacy. The job of laws is legal protection.

If such a law were in place, I would not have been petrified night after night of what punishment the next day I might face for being who I cannot help but be - who I wouldn't want an alternative but to be. Such a law would mean that, while I know it is hard to be part of an "unwanted" class, a burden to the normal, "deserving" people, at least I will have assurance that it is really, truly not my fault.

The problem here is access. Students, particularly disabled students, need a clear route by which to access the safe education they are legally entitled to, and by consequence to the safe existence to which they are morally entitled. Just like we run tapes and distribute brochures to educate students about sexual harassment and their rights, we should actively reach out to students who are autistic or otherwise disabled, different, or considered damaged.

Until then, we will always have students providing a negative stimulus, and teachers and counselors reinforcing, and regardless of capacity or desire for change the students at the hands of such treatment will forever remain clinging to the chainlink fence in hopes of escaping to the other side.

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.

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.

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).