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.

Required Medical Leave

This is a proposed new rule for my college (may have already gone through, my e-mail went on the fritz at about the worst time). It came, interestingly enough, after a proposal for the police to acquire rifles to deal with an active shooter failed, and during that discourse, many of the people against the proposal said that there should be preventive measures such as counseling instead, and in the listserv I warned of the potential for us to become overly vigilant for anyone who looks to be outside of the norm, to overly screen if prevention is our only means of addressing such a rare yet devastating situation (not that prevention would be 100% anyway, even if the schools excluded everyone who ever had a psych diagnosis before).

While this rule does not appear to be related (it includes physical disabilities as well), I cannot help but wonder how the culture will continue to evolve, here and elsewhere:

Issuing a required medical leave of absence.

(1) The dean of student and academic support services, or the dean's designee, (hereinafter collectively referred to as the "dean") may require a student to take a medical leave of absence if a student has a physical illness or a mental, emotional or psychological condition and as a result of the condition: (a) Is engaging in, or is threatening to engage in, behavior that poses a significant danger of causing substantial harm to the health, safety or welfare of the student or others; or (b) The student's behavior has resulted in substantial harm to the health, safety, or welfare of the student, or others and the behavior continues, or there is a risk the behavior will continue, posing a significant danger of causing substantial harm to the health, safety, or welfare of the student or others; or (c) The student's behavior has resulted in significant disruption of the teaching, learning or administrative activities of other members of the campus community and the behavior continues, or there is a risk the behavior will continue, with the likely result of such behavior substantially impeding the education processes or proper activities or functions of the college and its personnel.

(2) In determining whether to require a student to take a medical leave of absence, the dean shall consult with the director of health and counseling services, or the director's designee (hereinafter collectively referred to as "director of health and counseling services") and, where possible, other persons who can provide relevant information about a student's condition.

(3) Prior to the dean requiring a student to take a medical leave of absence, the student shall be provided an opportunity to present information about his or her circumstances, where reasonably possible, to the dean. A student waives their opportunity to provide information if he or she is unwilling or unable to meet with the dean in a timely manner.

(4) The dean shall issue the required medical leave of absence in writing to the student. The written notice shall include the effective date of the leave, the reasons for requiring the leave, the conditions for reenrollment, and any restrictions imposed on the student's access to the campus or college-sponsored activities.

(5) The required medical leave of absence shall be effective twenty-one days after it is served on the student, unless the student files a timely written appeal of the dean's decision as set forth in these rules. Service of the dean's decision shall be complete upon deposit in the United States mail to the student, postage prepaid and properly addressed to the student at the last known address on file with the registrar's office, or by personal service on the student.

Note that "danger of causing substantial harm to" is delineated as separate from "behavior has resulted in substantial harm to", and is a criterion for required medical leave as well. While I think it is the best course of action for a college to put students in touch with resources in the community if they are posing a danger to their health and safety (but not to anyone else) rather than to boot them off campus, it is the "welfare" criterion that seems widest and most vulnerable to abuse.

I think the main flaws in it is that it doesn't distinguish between procedures for requiring a student to leave who is posing risk to only themselves or to others as well. For instance, someone who has difficulty keeping their room clean and so it is a fire hazard, poses a (small) danger to themselves. But in this, they would be treated with the same procedures as someone who is violent in classes and has suicidal thoughts expressed.

It is also made clear that it may be difficult to reenroll:

Returning from a required medical leave of absence.

(1) A student wishing to be considered for reenrollment to the college shall submit an application for reenrollment to the dean at least one month prior to the start of the quarter in which the student wishes to reenroll. The student shall provide appropriate documentation with any conditions for reenrollment set forth in the dean's decision. If a student files an appeal of the dean's decision, and the conditions for reenrollment are modified by the review board, the student shall provide evidence that the conditions set forth in the review board's order have been met. A student must also meet all other admission or enrollment requirements of the college for reenrollment.

(2) The dean shall consult with the director of health and counseling prior to determining if the student may reenroll.

(3) The dean shall notify the student in writing of the decision and the conditions associated with the approval or denial for reenrollment. 

(c) Washington State Code Reviser's Office

So one has to re-apply to the college, and then after that, the dean meets with the counselor and health people to see if they approve. In addition to meeting the normal requirements to admission. Unless someone is posing a danger to the community, I don't see how this can be construed as right. As an optional procedure to assist a student in determining preparedness, yes, great, I'm all for it. But what if external observations have enough distortion to put a decision out of your favor?


I was reading through an evaluation of me that was very detailed (some tests and interviews to ascertain dx and functioning), and while it captured the state of living and my general appearance and public approach to strangers, it was full of half-truths (not to imply deception, as in addition to being based on only a glimpse of my life and on the notes that were written down rather than on an amazing memory, but also that my approach to strangers is vastly different to how I am with others, mostly consisting of common stock pleasantries, echolalia, stimming, and stronger sensory experiences).

(In a further confirmation of this fact of life, they even wrote a half-truth that is concretely, verifiably false: that I'd never had an IEP based on a misunderstanding of my interview statements about how the high school delayed my IEP and never gave transition services other than a short paper detailing my strengths and weaknesses, which, while admittedly could have been clearer, were very detailed and repeated often enough. While this could just as well have been due to ambiguity in my account I gave - I do not recall such large extent of ambiguity as to grant such large discrepancies of accounts, but memory is fallible and it is quite possible - psychological consultations consist largely, almost entirely of statements of the individual and the interpretations made of them, so a clumsily constructed explanation should not be relied on, and hopefully such reports would be taken with large hills of salt).

Oddly enough, it was another half-truth, though one much more reflective of reality, when it was noted that I had never received transition services yet received some form of special education services.

Come to think of it, I have no idea what she thought I was trying to say based off what came out in that weird report! Just got back the report, GAF 40-45 and autism confirmed via ABAS and ADOS; WASI 3 in similarities, 17 vocab, 14 block design, 12 matrix reasoning; apparently they say I have a disability called chemical sensitivity when I referred to my being overstimulated by certain smells - yet another half-truth finding its way into report, my facts, perspectives on them, mixing with their interpretations and vantage points, this climate seems optimized to highlight the biases in human perspectives and reporting which makes a real problem when one person's report is seen as less valuable or reliable a contribution.

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.

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.

One reason that has been presented for the term "regression" to be inaccurate, as proposed by Amanda Baggs: "It is clouded by terms like regression (which implies that loss of skills is growing backwards), functioning level (which implies that all functioning is affected at the same level and that this can be measured in a linear fashion), and more autistic (which implies similar things to functioning level)"

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.

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. :)

----

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.

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.

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.

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.

Calling All Advocates

This is my first autism-related video.

http://www.youtube.com/watch?v=S0e8adgO06E

This is a call for responses of why you are active in autistic rights, whether by blogging, or using YouTube, or whatever you do and why you do it. It calls for a multitude of statements from our community as to why we believe the things we do and why we are worth fighting for them.

Here is my response:

We are living in a time where the voices of people long ignored are starting to be heard, if only faintly, for the first time by thousands or even millions of people. This is a movement not only for our rights, but a movement to address questions fundamental to human existence.

I blog because I can't let another moment go by where someone speaks for me.

I make videos because it is through motion and sound I most effectively communicate.

I organize because it is only through solidarity that we can achieve a better world not only for our generation, but for the generations now coming into being, and those I aim to preserve their ability to enter into being.

I make a statement not because I want to, but because I have the moral obligation to do so.

I must raise my voice, or who will defend me when I am silent?

Sick, and Other Thoughts

Club Rush is this week, which means I'm going to represent the clubs I lead (including Gay-Straight Alliance and Autistic Rights Advocacy). Hopefully more people will join and attend this semester, now that I've got things a little more organized.

I got a new magnifying glass from the Braille Institute this Friday, so I can actually read my textbooks now! :) I can now get to a backlog of work I have for some of my classes.

For the Club Rush day, I plan to have at the table a jar where people can put a dollar bill or coins into, to go towards our club's book fundraising drive to donate positive and informative books about autism to the local libraries. I am thinking of calling it Education For Autism.

I also want to hand out stickers, and I intend to have some informative videos playing on my computer. I am also putting together flyers and information sheets.

An interesting thing about being sick, I've noticed, is that it takes longer for me to execute certain actions, such as brushing my teeth or going to the bathroom or fixing tea. My skin is really very sensitive right now, much more so than usual, and it is very difficult to coordinate my thoughts.

Hense the rambling nature of the post.

The other night I got frightened because I had had hardly any sleep, and on the ceiling I saw this circle of reflected light on the ceiling. I couldn't figure out the source, though, so I started walking around the room and the hallway, looking to see if I was blocking out the light source and making the ceiling reflection disappear. Twice I succeeded in this, but it wasn't until the second time that I realized what the light source was.

It was a light from the laundry room, which I soon discovered was bounding off of a CD left on top of the sofa. I put it in between the pages of a notebook, as my eyes would play tricks and make me think the light was moving.

It reminded me of when I was very little, maybe about three or four, and I would sit with these small rectangular mirrors, and bounce light from them onto the walls. My dad would join me, and one of us dubbed them UFOs.

A funny thing about the IEP meeting a few weeks ago -- apparently autism isn't even listed in it! They had just listed Speech and Language Impairment. The actual IEP report also has some other glaring omissions, such as saying that adaptive/daily living skills are "not an area of unique need" (even though I'm 18 and in less than a year supposed to live on my own).

It has some mention of social skills difficulty, and states that I have "difficulty to maintain detailed organization with [my] papers and materials". True enough, at least for the latter, but I find it ironic that the difficulties I have that are quite common among people my age get mentioned specifically, whereas my more unique needs are completely ignored, despite my specific input.

In fact, my only social skills deficit (that I can think of) is in cutting into a group that has already formed. My main thing is with figuring out what and how I need to do things in order to get around. How to maintain daily living skills. Why nobody but me (and occasionally, my parents) has been mentioning these things, which are the most important as I'm going to be living independently, I don't know.

My primary issue: Trouble organizing, I can get help from the tutoring and help center available for disabled students. Trouble getting into groups, might impact in lab work or if we have to choose groups for small discussions, but I can usually get around that by approaching the teacher and asking to be placed in a group.

But there isn't going to be a teacher in my dorm room reminding me to brush my teeth and take showers and eat and drink and do laundry. So far, my efforts in these things, even if starting successfully, have deteriorated and I stop doing them.

And so, being sick, I now factor in the additional difficulties of when I'm sick. These things take longer, and get done with far less frequency, when I'm sick and also alone. I usually spend a few weeks to a month or two out of the year sick to some degree (usually only 3-7 weeks a year of really bad -for me- sickness, which is what I'm in the middle of).

I also missed my astronomy class tonight. It's really too bad, since we're starting on new material, and I would've learned what my grade was on the last test.

The Penny Looks Sad

I don't know how common this is among autistics, but for many inanimate objects, I feel very emotionally connected to. Not as emotionally connected as with other people, but I seem to be able to express it much more clearly for non-human things and objects.

Today I apologized to a window decoration because I tore it. It was out of curiosity, as to how it would look and feel if I tore it, and it was a conscious decision I made to tear it. It made me feel sad, though.

I feel more sadness for people, when other people are hurt (either by me, other people, or other things, such as natural disasters). However, I don't show it in the ways other people seem to do, or expect me to do.

I'm not sure exactly in what ways my external appearance indicates to others that I am not emotionally connected, but I do know that these assessments are usually wrong (the exceptions being when I defended myself against someone attacking me, or if I do not feel sorry for someone who has done something awful and I feel they deserve it.

However, simply not liking someone is rarely grounds for me to feel that they "deserve what they get". I will still feel sorry for that chatty, materialistic girl who entered my class in sixth grade and made fun of me even though I told the boys, who criticized that she wore too much makeup, to give her a chance, when her next boyfriend treats her badly.

Unfortunately, because we express things differently, we are rarely listened to when we say that yes, indeed, we do care.

After only a few short years from when I was diagnosed at age 10, though, I had heard enough of the misconceptions about autism that by age 15 I was parroting back that I was practically emotionless, like a robot. I insisted that I had no empathy, that I was a strictly logical being, and that I had excellent rote memory.

None of these were true.

So I would caution anyone against taking the assumptions found in the medical literature as a factual representation of how all (or most) autistics are. This goes for any autistic person reading just as much as any non-autistic person.

A Lesson on Embarrassment

When I was young, say 8 or 9 or so, I was in the waiting room of a doctor's office. I don't remember whose appointment it was, or why, but it doesn't really matter, I guess.

It was a long waiting time, and they always have those awful fluorescent bulbs. They use to bother me more when I was a kid, giving me headaches and making it hard to focus and process information and whatnot. The effect is the same now, but to a lesser degree.

There were other kids around. They played by the corner, where the kids' toys were. I wanted to go join them, but my mom said I was too old.

I love that thing where there are the beads, and there are the thin, plastic tracks they can follow in curvy paths to the bottom. I liked to envision it as an advanced public transportation system. Please board the Green Bead Line on its way to Chicago. Now boarding. Please have your ticket ready.

But I was too old, and certainly my sisters, one 2.5 years older than me, approximately, and one almost exactly 5 years and 4 days older than me, were too old, though they didn't express interest in these toys. When I was 13 visiting a neurologist for my seizures, there was a picture book about a Brain Cell. Or something like that. I should write fanfic for him.

The lights continued to glare, and people's names would be called, people picking up and flipping through magazines, babies crying. It was all so much. So, I made a dive for it, and I burrowed myself under the chair I had been sitting in and pretended I was in a Bomb Shelter, hiding from horrible and yet unknown threats from above.

My mom tried to get me out from under there, and tried to recruit my sisters for help. But no, they must be only clones of my family, trying to get me out of there so that I wouldn't be safe from the attack!

My sisters ended up joining in my play. Or at least, I thought so. Turns out they were just making excuses to be rowdy, but I didn't know, and I thought of them as the intruding army. I covered my ears so they wouldn't use their brainwashing propaganda tactics to turn me into a vampiric zombie. As presumably they would.

So I got out of the shelter and started pacing about in circles, humming to keep their threatening broadcasts from reaching my ears.

My mom whispers loudly, in that frantic-type voice, "Melody, you're embarrassing me!"

Without pausing in my circuit, I say, matter-of-factly, the wisest thing I believe came out of my mouth during my youth: "I can't embarrass you. You can only embarrass yourself."

Of course, what I meant was: The fact that I'm doing something doesn't embarrass you. It's that the thing I'm doing is something you don't look at as socially acceptable, because of what others might think, and so because of your attitudes, you are becoming embarrassed.

I thought of this as I took my written exam for taekwondo, and there was a question about attitude, and how it's important how you react to stuff.

"Life is 10% what happens to me, and 90% how I react to it."

I knew how I would react to it. My mom now knows how she will react to it. How will you react to it?

A Rant About Entitlement

Some people act like they're entitled to a certain standard of living, a certain child, or a certain material gain. To me it seems to be a version of that whole "American Dream" concept and the glass ceiling - but with a twist. The thing is, under certain unexpected circumstances, the privileged find themselves in a situation where one of their assumptions about how their life would turn out is not met. Rather than look at things as challenges or part of life, they look at it as an attack of their entitlement.

What spurred this rant?

The only part of Autism Every Day I laughted out loud was when that woman was complaining about her poor, leaking roof, where she had this elaborate setup to catch the water. Ha! Try not having running water and leaks so that when you need a bucket of water to wash your hair or do dishes you have to go outside in the rain and turn the water on, but you only have a few minutes and no heating and, hm, here's a thought, put a TARP over your roof.

Maybe that's harsh, and I don't think I particularly have any business levelling this claim of "whininess". I felt similarly to this when I read the book "Nickel and Dimed: On (not) Getting By in America".

The author, while well-intentioned, and I wouldn't criticize her motives, seemed to make a big deal out of difficulties that are part of the everyday living experience for myself and a large percentage of the human population. It almost had the undertone of "Let's pity these unfortunate poor people who must work for minimum wage."

I am familiar with the very real struggles of being poor, at varying levels, but there is a difference between someone who CANNOT feed themselves and their family, and someone who can but faces additional difficulties and cannot afford most of the amenities that many Americans seem to take for granted. In fact, many of the minimum-wage workers she worked alongside didn't have much interest in creating a (minor) revolution in the system, and got by fine. (Remember, we're talking minimum-wage, not below-means. Multiple jobs are sometimes just a fact of life.)

Of course, someone who's got things a lot worse than I do, if they read a life story of mine, would probably respond similarly "If she thinks this is tough..." And they'd be right in that.

So what is the usefulness of such a line of thought?

Often, those who have enough disposable income that they don't have to worry about not getting the kids fed, or about getting the rent paid on time, their concerns go to the expectation of their kids going to (a prestigious?) university, to get the kids driving at age 16, and all those other measures that society looks at for material success. People who aren't so focused on just surviving experience the added pressure of having an "ideal" family setup.

Not that the poorer parents would have any less difficulty raising an autistic child - more would be the standard fare, I'd presume. But the attitude that something is "missing" or that the child would somehow bring embarassment to the family's image just doesn't seem to be so rampant among people who just want to make sure their kids survive, rather than spending additional energy trying to get them "near-normal" or anything like that.

Maybe I'm wrong. And in any case, it would be just a trend, and trends never do tell anything especially useful for individuals, except as relating to the societal attitudes and how these may or may not impact. It would certainly explain some of the marketing strategies employed in videos such as Autism Every Day. If the largest dollar amount in donations is going to come from wealthy or semi-wealthy people, it would make sense to appeal to the expectations and fears of the upper-middle class. If the potential donors can identify with the prospect of the "horror" of having an "aberrant" child, then they'll probably identify with the goals and support them.

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.

She'll Come Quietly, But Let's Grab Her Anyway

It was the day before school let off for winter break, and since I have to wait awhile (an hour usually) before school starts, I wanted to wait inside. This is fine, as during the first two weeks of December, the school administration lets us inside the first floor of the building.

What was not fine.

It was noisy. There were a number of students crowded in the lobby. I had a computer, an alphasmart, a camcorder, a tripod, a book bag and a purse, three items in each hand. And it was noisy.

It was too difficult to navigate my way outside, as there were so many people, and I was so disoriented that I would've probably dropped the equipment I was carrying (I didn't own the camcorder). So I stayed where I was, shifted myself to an area where not so many people were congregating, and I shut my eyes.

Even this, though, I couldn't concentrate enough effort to keep my stuff up in my hands (it was quite heavy). And I could still hear the unbearably loud noise, but because of the stuff I had to hold, I couldn't clasp my hands over my ears like usual.

So I dropped slowly down to the ground, set the stuff to the floor, and covered my ears.

Next thing I know, the guidance counselor is there in front of me, and while another administrator takes my stuff, she grabs me by my arm, leading me to her office. I fling my arm away, make a sound of anguish, and she grabs me again. I get out of it, and she grabs me again. And again. And again.

Now all this time, I'm fighting myself to not hit her. I keep my eyes closed. I struggle again and again, but also this is through a crowd of my peers. While I don't particularly care about what gets said about me, and there hasn't been any real bullying of me at this high school, I'd hate people to think I'm acting irrationally in not wanting to be led and grabbed by this woman who, while nice, doesn't seem to be getting something.

Except, she says she does. As I struggle to get out of her grasp, she says something along the lines of, "I know, you don't want me touching you." I get out of her grasp. She grabs me again. I get led to the office, which is much quieter and a better place to be, but why all this trouble?

What I don't understand is why was I forced through? I was not banging my head, or showing signs of being angry or aggressive. And during the time I was struggling, I was never running off or inflicting damage to her. I was trying to follow, as I had done before being forcibly picked up and removed.

None of it makes sense to me. I could understand the other counselor, who didn't know beans about responding to a person in distress, let alone anything about autism. But, unless I am drastically mistaken, this particular counselor is very privy to the fact that I am autistic, and I have been in regular contact with her regarding the scheduling of my classes and college preparation.

I'm not sure what I should do, let alone what could I do. I just feel wrong about all this, and have not made any attempt to describe, by writing or otherwise, this to anybody, even though it happened a couple of weeks ago.

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.