Autism All the Time

Required Medical Leave PT 2

2009-07-07T22:26:00.000-07:00

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

2009-07-07T01:22:00.001-07:00

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.

No Shirt, No Speech, No Service?

2009-01-20T14:53:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

Transitions

2008-10-16T20:19:00.000-07:00

Transitions can be difficult.

Especially when you are sick when making them.

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

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

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

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

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

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

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

The R Word

2008-08-04T16:06:00.000-07:00

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

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

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

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

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

The Particles of Oppression

2008-08-04T03:38:00.000-07:00

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

2008-08-02T20:05:00.000-07:00

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.

Pushing Limits Interview

2008-08-01T18:29:00.000-07:00

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

The program can be listened to at:

www.kpfa.org/archives/index.php?arch=27634

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

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

What does neurodiversity mean?

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

Why did you join this AFF site? 

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

Do you know of the wider disability rights movement?

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

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

Where would you like Autism Rights to go?

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

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

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

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

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

Innocently Stereotypical

2008-06-21T03:08:00.000-07:00

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

THIS SITE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Autistic Pride Day!

2008-06-18T08:00:00.000-07:00

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

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

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

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

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

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

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

*shrugs*

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

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

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

You Are a Chihuahua Puppy

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

What Breed of Puppy Are You?

Evidence of Smarm

2008-06-04T22:26:00.001-07:00

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

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

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

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

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

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

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

Degraded or Just Degrading?

2008-05-21T18:21:00.000-07:00

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. :)

----

Meme-orable

2008-04-23T22:33:00.000-07:00

Abfh tagged me.

5 Things in my bag:

1-A ruler that also functions as a calculator

2-A print card for the local community college

3-Bubbles

4-a Straw

5-pamphlet from the Mars Society

5 Favorite things in my room:

1-My Invader Zim figure collection

2-Animator's clay and some figures made therof

3-my two tarantulas

4-Globe

5-Telescope

5 Things I have always wanted to do:

1-direct a documentary

2-establish a school primarily for autistic kids

3-publish a book (or two or three - some autiebiography, some science fiction and some mainstream fiction)

4-get a Ph.D. in physics (emphasis on astrophysics or particle physics)

5-make an animated cartoon

5 Things I am currently into:

1-astronomy

2-animation

3-writing (especially novel and sitcom)

4-Japanese language and culture

5-making up my own language (I invented an alphabet yesterday - now I just need the words and grammar!)

5 people I'd like to tag:

1-Marla

2-Casdok

3-abfh

4-Bev

5-Big Time Sysnaesthe

Consider yourselves tagged! :)

Bullying: How the "Other" Grows Up

2008-04-20T17:37:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

ON Growing Up One Arm in the Straitjacket

2008-04-19T17:09:00.000-07:00

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?

2008-04-17T16:24:00.000-07:00

(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

2008-03-26T13:45:00.001-07:00

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

2008-03-24T19:36:00.000-07:00

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

2008-03-24T19:09:00.001-07:00

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

2008-03-08T19:01:00.000-08:00

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

2008-03-03T20:55:00.000-08:00

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.

Strange Lights on Saturday

2008-01-27T22:36:00.000-08:00

This is a bit unusual for me, but something unusual happened, and I felt the need to write about it.

It happened on Saturday.

My mom was driving, and my dad sitting in the back seat, I was sitting in the front passengers seat, and we were going north on the 57 freeway, and the traffic started to slow down significantly, and people around us were looking at the sky. I looked ahead, and then a big light (close to the apparent size of the moon) appeared high up in the sky. It looked as though it had a trail of sparks behind it, and it was very slow in its descent.

Then, it went out, but another one appeared, just like the first. It seemed to veer off to the right, in a twirling motion. It went out again, and there was a pause, for about 3-5 seconds during which I couldn't see any. Then two more appeared, and a third, and they continued to do the same things. One went out, and another two appeared. At this time there were about four or five in the sky at once, all doing the exact same things, except at progressively lower heights. As they got lower, the impression that they were trailing sparks became much more distinct.

Towards the end of (what I saw of) the event, there was one which seemed to be very close to the ground - not so close as I would think it a few feet from the ground, but close enough that I grew the genuine concern that it might hit our car, or hit the freeway close enough to cause a crash that would cause damage to us as a result.

However, this, too, disappeared from sight, as though it had burnt out and lost its light.

At first, I thought it was pieces of a satellite, as the trails of sparks that gave them their fiery looks seemed to suggest, and it's far too slow to be a meteor, at least any meteor I've seen. I would think that such a case would involve the objects falling faster, though, so I do have some questions surrounding this idea.

I felt pretty neutral beforehand, pretty good, actually, as I was listening to Relayer, and was pretty shaken up during it, mostly relieved afterward that it hadn't caused us harm, whatever it was. I still don't know, don't think this is an extraterrestrial-controlled thing, but it is certainly very unusual (first thing I've seen like it, compared to any UFOs, stars, planets, meteors, planes, or satellites that I have seen), and I wouldn't rule this possibility out, particularly as I lack a better explanation as of this point. (Edit: It did turn out to be some people in balloons or parachutes, who were performing nearby.)

I am just furiously anxious to understand what happened. Apparently a whole bunch of people in the parking lot of the restaurant The Hat were all looking up and staring at it. I have seen nothing of it in the news, on YouTube, in image searches, news searches or general web searches, with the singular exception of a couple of people who reported it as UFO reports. I don't think it's extraterrestrial craft, though, and would be really eager to hear what it likely is.

The Penny Looks Sad

2008-01-21T13:47:00.000-08:00

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

2008-01-19T13:52:00.000-08:00

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

2008-01-02T23:39:00.000-08:00

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

2007-12-31T22:04:00.000-08:00

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

2007-12-29T00:30:00.000-08:00

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.

Tact and Advocacy

2007-12-15T19:56:00.000-08:00

I sincerely would like to apologize about some of the insensitive people who claim to speak for the autistic community but in truth don't.

I am not strictly describing pro-cure NTs. There are also autistics who get on my nerves because not only are they narrow-minded, but they show no interest in expanding their understanding and perspective.

Of course these people are in the minority. It is unfortunate, however, that Alison Tepper Singer can be put on a video claiming to raise "awareness" as she describes the only reason she didn't kill her autistic daughter was because she had a normal daughter too and even be praised for her "courage", while a few narrow-minded autistics who state their views without presenting them in any kind of logically comprehensible OR emotionally sensitive way are demonized as "nasty self-advocates who want to take our kids' services away."

Like extreme views of anything, people are far too prone to get rigid and nasty about them, autistic or NT. I do not consider myself a "radical" or "extremist" for opposing the idea of cure. I tend to define these terms by the way a group or individual goes about achieving their goals. Of course, there are cases when the goals themselves are extremist and dangerous: who would argue that the advocacy for genocide, racist Social Darwinism, or war-mongering are not of themselves dangerous? Likewise, just because there are dangers to the ways that religious fundamentalists, such as of Christian and Islamic denominations, doesn't mean that everybody who is Christian or Muslim advocates for death to America or persecuting gays.

I hate it when autistics who don't have much of any of the disability aspect try to speak for everybody just as much as I hate it when non-autistic people try to speak for us. It's just no use.

On the Internet, I have encountered many pro-cure people who viciously attacked me even when I wrote about understanding that it can be very difficult for parents; my NT mother has had much trouble with me, and I do not have as many special needs as some others (such as, I can't brush my hair, but I can do toileting; I can speak, but often get overloaded and can't).

Remember everyone: assholes are assholes. Some of them happen to be autistic, some of them happen to be NT. It doesn't mean that either group is more prone to such attitudes.

Autism, while a disability that should receive supports, accommodations, and adaptive skills, should not be eradicated or looked at as wholly negative. I don't want a cure, but I also don't assume that the people who say they want one are bad parents/hate their kids/insert other stereotype.

I believe in diplomacy. This doesn't mean we have to be wishy-washy, roll-over-and-do-what-the-NTs-all-tell-us autistics. We can criticize the foundations of the ideas in favor of cure without resorting to ad hominem attacks on those who support it. Especially this is true since the word "cure" is often used to describe developing adaptive skills (such as speech and toileting), which I do not believe is cure.

While it is still very important that we not concede on helping parents to understand that being nonverbal is not a jail sentence, if the individual is capable and willing, some of these things are useful skills. We should focus more on the WAY the skills are taught, to see that they are not being coerced, that the individual is not made to feel inferior for "autistic behaviors." These, after all, are requisite to human equality, and I have no intention of conceding these goals, which need not be compromised by employing some empathy.

As to the divisions. They are Everywhere.

HFA, LFA, AS? Touch of AS? ND or curebie? Retards and computer geeks. I get pretty sick of it. Especially it annoys me when people use the word 'retard' as an insult. It is to me like using the word 'gay' as an insult. When I was in elementary school, I heard people say, "That is SO GAY - you're so GAY" so much that I preferred the word homosexual. It surprised me much when this summer I got my hands on a copy of The Advocate and some books about the gay rights movement, and I learned that the preferred term in the gay community is just that - gay. Why? Because 'homosexual' was too medicalized a term, one used often when it was a diagnosable disorder voted in by the APA and voted out again in 1973.

Why did I bring this up?

I am not sure at this point if I really forgot my topic or if I was trying to utilise a rhetorical strategy. In any case, the existence of a word alone does not make it offensive or acceptable. In fact, devoid of the usage and origin and other available context, a word has absolutlely no meaning, and is merely a string of the shapes of the letters to form it, and the sounds it would make if one were to produce it.

The problem lies with kids growing up thinking that if someone is gay or retarded, then they are less valuable and worth mocking. Growing up, I frequently got called both. I wonder how many grade-school kids get called "retarded lesbo?"

The fact is, whatever category people try to group me (or anybody else) into, to force-fit like the puzzle piece so many seem to think goes well with autistics into the narrow configuration so many would like to see me fit, I just can't, and I won't. Even though on the surface I resemble the math-and-science-obsessed Aspie stereotype, and that aspect of it is true, it is impossible to put someone in so narrow a box without losing a few chunks of the individual.

I tend to relate more to nonverbal auties who use a speech device than to the highly verbal aspie who has trouble with social skills. My social skills are actually pretty good; though eye contact and body language for me are atypical (in the case of eye contact, virtually nonexistent), and these are not instruments I use to augment my social understanding. Fortunately, the high school I attend is generally accepting of different people, so the fact that I spend 90%+ of my time at school rocking and moving my hands and occasionally getting up to pace, or those days in tae kwon do that I just can't speak at all, these don't affect friendships adversely for me. At my other school, where I repressed most of these behaviors to the best of my ability out of fear, I had the understanding of a select few, the sympathy of a few more onlookers who recognized injustice - most of whom did nothing to support my efforts, however.

So as we recognize that these labels are often used as dividing lines and demeaning labels, that we are not so simplistic as to fit them - no one is - we must also consider that not everybody is being a big NT meanie who wants to take away our rights and abort us. True, we cannot be weak and submissive, or we will only be worse than ignored, but being rude will work to this unfavourable end as well.

So please, I urge all budding activists, who seek to impact the posautive change that I have begun my journey to realize, to employ tact wherever it is necessary. Of course someone who outright insults you with an ad hominem attack loses that privilege, but where the individual is not making a direct attack that is meant to villify, then please employ this tact. It is difficult at times, and what helps me is to write my angry, emotional stuff down on a separate file, then post a logical, tactful reply. (Not that I always succeed - I am sure that I have slipped up. My crowning achievement in this area is when in response to a YouTube video in which a parent referred to the autism "epidemic" as a "slaughter" I kept my cool for a 500 word response limit.)

Autistic Self-Advocacy Myths

2007-11-24T17:21:00.001-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

The Transparency of Hysteria

2007-11-24T13:16:00.000-08:00

This was an essay I wrote for my Literature and Composition class. It is about Arthur Miller's play The Crucible, and I relate it to autism issues. Hillary Clinton at one point is mentioned; it could have been many people I would have mentioned, but as she is influencial in politics in general, I chose her mention.

The odd page numbers used in citations are from our class textbook. This essay, minus grammatical and spelling corrections and the like, took approximately one hour ten minutes and was restricted to about three pages double spaced in length, so it is not so thorough as it could be, but rather serves more as an outline for a project of greater depth.

Literature and Composition III
7 November 2007

The Transparency of Hysteria

As significant spatial and temporal distance removes people from personal involvement from a situation, the relevance of historical incidents of injustice increases in direct proportion with the time passed since the injustice occurred. Human history is smattered with repeats of mistakes – lessons learned, then promptly again forgotten. An illustration: the international community, following the Holocaust, responded with the vow of “never again.” Yet, less than a century later, the same community has taken little to no action in response to the genocide in Sudan. Another lesson briefly learned, studied, and then forgotten to move on to the next stage of the progress of civilization. In the same way as the importance of remembering the misdeeds of the past increases for such events as genocide, so must humanity step up to the commitments made upon the apologies and restitution made following the Salem witch trials.

Arthur Miller’s The Crucible is a perfect example.

Those who exist along the fringes of societal norms – be they women or communists, the homeless or the disabled – are used as the scapegoats for society’s problems. In the case of Salem, the fear lay with the sin and discontent of the community; in more modern times, the fear lies with the very same, though it manifests in various and less obvious guises.

In the United States today, secular values are at the very least tolerated, and a politician (or most other public figures) would face mockery for claiming that the Devil has infiltrated the country and poisoned the national community with sin. However, few who have made equivalent claims, substituting Devil with (insert unpopular ideology) and sin with (insert whatever condition or state is feared – and indeed it often still is sin), have been recognized as practitioners of quackery or purveyors of paranoid thought. Rather, such individuals are lauded for their obscenely ignorant claims, as society is “pulling Heaven down and raising up a whore” (876; Act III), allowing the culture of conformity to strengthen, feed upon its own fiery flesh. Such a lauded individual was Abigail Williams; more recently, Senator McCarthy (for his perpetuation of the Red Scare) and Hilary Clinton (for her propagation of eugenics ideals with regard to the autistic community) stand out. These signs of modern hysteria are evident, at least as evident as they were during the time of the Salem witch hunt. Just as one can justify the ignorance of Hilary Clinton by placing the blame on the conviction of the autism cure charities that they are working to save children, so can one divert the blame from Judge Danforth and Hathorne, as they were working under the belief that they were instruments of God. It is far easier to condemn in retrospect the irresponsible actions of a society, just as it is far easier to forgive in the current times actions of equivalent irresponsibility.

During the time of The Crucible, however, secular ideals were not at all valued. The idea that witches may not exist in the world was outside of the societal expectation, and surely any belief outside of the realm of the mainstream must represent a belief outside the realm of humanity. Such a person as could not remember every commandment, or who might lie or grumble or act in any way that would break conformity of belief, was automatically transferred to a lesser status, a status of rank lesser than that of a true human being. Elizabeth acknowledges this degradation of character when she firmly stands by her beliefs and tells Reverend Hale that “if you think that I am one, then I say there are none.” (858; Act II). It was for this reason that it wasn’t until those with “weighty names” were hanged that people began to question the validity of the trials. Similar to this precedent, until the “higher-functioning” range of the autistic spectrum was made known, there were essentially no non-autistic people arguing against a cure. On the artificial hierarchy, those who look and act so vastly differently from the expectations to which human beings are socially judged may be disregarded as not even people, whereas someone on the spectrum who earns a college degree is held at a more “respectable” level, and so by mere academic merits the worth of the whole person elevates in the eyes of others. No one even took notice of even the possibility that there is an unjust war being waged against a group until someone of “weighty name” (such as Albert Einstein or Bill Gates) is speculated as being part of the group that the majority wishes to eradicate. This mechanism was the driving force behind John Proctor’s dilemma. Just as this is relevant to the characters of The Crucible, to those implicated in the HUAC, and to autistics, so it is relevant to many other groups and other time periods. Surely the pattern will not cease after the vogue hysterias of the day subside.

When Miller wrote The Crucible, many were pointed to as the source of America’s vulnerabilities and struggles. These supposed communists were said to be undermining the country, weakening its foundation. These strategies of diverting attention from issues and their solutions to the seductive proposal that “it’s their fault; let’s get rid of them” rings startlingly in resonance to the key of propaganda as was promulgated in Nazi Germany. It is fortunate that the United States did not set out to create death camps for communists or anything along these lines, but it is nonetheless built upon the same strategies of ideology that led to those tragedies, particularly when one keeps in mind that the eugenics movement got its tremendously popular start in early twentieth century America, and that the kind of sterilization laws that Nazi Germany implemented were modeled after equivalent laws in the United States. Miller addresses this by the testimony from Giles Corey’s anonymous informant that Thomas Putnam instructed his daughter to vilify the name of Jacobs in order to acquire personal gain (Act III). For this reason, such tactics cannot be dismissed. Miller intended to use this play to warn future generations of this fact, that travesties of justice recur, and recur with a greater frequency than it is preferable to believe. In order to avoid this scapegoating of people, we should evaluate prejudices towards the unfamiliar, and to look at the marginalization of those who lack power (for they may revolt), and to regard such people as much people as any other, for if there is no one to scapegoat, then people must look to themselves and to their society that they have created as the source of their discontent and the promise for their future, for any person may next fall into that category of the undesirable person and become a casualty of the cracking foundation.

Sympathy For Murderers

2007-11-24T00:23:00.000-08:00

It has happened a number of times, too many times. A parent who kills their disabled child and then receives not only unbearably light sentence, but receives compassion for the situation of the murderer in such a way that the portrait is painted of a sad but justifiable action.

Why does this happen then? It is easy to point to ableism at work, much as racism when someone who is part of a racial minority is killed. This only looks to the surface, though. It looks to the cause of the misplaced compassion as being the original devaluation of disabled people.

Most people acknowledge murder as wrong, and absolutely reprehensible in most circumstances. It becomes incomprehensible to conceive of a parent murdering their own child or children. So incomprehensible that there must be some reason. Some look for mental illness - in turn casting the misconceptions to people themselves with disability. Some look for traumatic background of the murderer.

Probably you'll scoff at the latter. "What kind of excuse is that?!" -- This is just the thing that I would respond to either of these diversions of blame. Neither of them excuse the action, or make it "more understandable" as in lending some justifiable predisposition towards.

So here I present my conjecture: In being unable to conceive of a parent killing their own kid, they feel that there must be some reason that the parent acted this way, some justification that would propel someone into something impossible to conceive.

And disability makes the perfect scapegoat.

Rather than being fueled by the inherent ableist prejudices of the society (which doubtless exist), this looking to disability as a justifying circumstance is fueled by the desire to not believe people are capable of such evil as would ordinarily connote murder of (especially one's own) children. Of course, the unfortunate by-product of this line of thinking is an illogical jump to the thinking that puts the life of a disabled person as less valuable than that of a "normal" person. And so contributes to prejudices about people such as mercy killings, fault of the insufficient services, the torment inherent to the disability itself, and other such nonsense.

This is far less in-depth than I had intended, and probably much less clearly stated than I had intended.

High scores = high-functioning?

2007-11-12T16:15:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

Some basic myths about autism

2007-11-11T19:41:00.000-08:00

Keep in mind that, in any of my posts, inevitably there will be issues not addressed, or those that are barely elaborated. Anything less than a book is necessarily incomplete in this manner.

This is what I wrote in the comments/discussion section of an article in The Guardian about autism (some writing added, especially near end):

Anti-cure doesn't mean anti-support. I am autistic, and I am in speech therapy, since even though I write coherently, I rarely speak well (especially when I am to speak spontaneously, this is mostly impossible). I took until I was about 10 to be fully toilet trained, and I couldn't dress myself until I was about 8. I still can't brush my hair without help. The sound of my mother or sister making a phone call in the other room with the door shut was often a sensory overload. I scored in the bottom 8% of people my age in the Test Of Problem-Solving, with a social age level at <11 years, 4 months (I am 18). I have seizures and have head banged for a good portion of my life (not as common now, but still sometimes). I was diagnosed Asperger's at age 10 through the elementary school, and my dad has some autistic traits.

Anti-cure perspective is not only by Aspies or HFA people. Look to Amanda Baggs, who is a nonspeaking, autistic woman who stims very much. She is against cure.We do not believe that autism-related difficulties should be ignored. We believe that there should be a balance between adaptation (of the autistic person to a non-autistic society) and acceptance (of the autistic person by other people in society). One of the myths is that autistics are constantly suffering of autism. We suffer when adults at the school, or sometimes in the home, yell in our ears thinking that we are disobeying them, when in fact we simply are not hearing or are not understanding the specific instructions given.

Just because someone isn't smiling doesn't mean the happiness isn't there. I have tremendous difficulty hugging my parents, but they have been educated as to the realities of autism, that because I do not want physical contact does not mean that I don't care, or don't love them, or am cold and aloof or simply not trying.We are also said to be doomed to a life without friends. This is not true, although yes, it is harder for us than for others, and our friendships tend to have a different texture to them than NT relationships.

In elementary and junior high school, I never really had friends. I was beaten horribly by my peers, in fact, for my difference, for the way I rocked in history class, or needed clarification on so-called "simple" instructions that for me were incredibly vague. But the answer is not to get rid of autism, but rather to enforce the school counselors to follow the law. By law, those bullies should have been suspended (for some), expelled (for many others), or even faced criminal charges (for one or two of them). The counselor told me that if I behaved more "normally", then I wouldn't have these problems. She seemed to think that, since my test scores were high, then I must be high-functioning in all areas - and even if I could have changed, I made on that day the difficult resolve that even if I had the ability to change, and that this change would make my life so much easier, that I would not want to be anyone else.

In high school, I switched to an arts high school, where the student body was radically different from the other schools - they were incredibly accepting of differences, and when I got out of my seat in my literature class and spun around in the room, people didn't laugh at me, nor did they pity me. I was just being me, and people at the school thought it was cool - whether they knew it was in my neurological nature to behave this way, or whether they thought I was just nonconforming, I found a place where I was accepted as myself - as the person I was and wanted to be.

Nowadays, three years from when I entered the school, I have several friends, and I never make eye contact, I often break the flow of conversation with my silence, at not knowing what to say or how to say it, I rock and spin and have difficulty doing simple things unless everything is broken down into detailed instructions, I meltdown when the fire alarm rings, or when it is crowded and noisy, and my friends show me compassion just as they would if a "normal" friend had been assaulted (or insulted) and needed help, emotionally or physically. I am treated as a social equal, despite my social and speech ineptitude.

Helping an autistic person to function does not mean training him or her to make eye contact, or to stop spinning or rocking. When I do manage, to somehow, for some few seconds at a time, to make eye contact, I have an even harder time than usual in processing spoken speech. Stimming helps me to not get quite as stressed out from fluorescent lighting, or that grating buzzing sound I'm hearing now, from a machine not too distant.

It disturbs me is that much of the autism research supposedly going towards a cure and "prevention" is going toward the development of a pre-natal test for autism, so that parents can selectively abort their autistic children, an action that would amount to the eugenic screening out of autistics.

And do not think this is just an Aspie issue.

I would be just as saddened, and disheartened, to hear that autistics who don't speak, have IQ scores in the range of mentally retarded, and who have poor self-help skills were no longer being born as if the speaking, Nobel-prize-winning Aspies were no longer being born. The fact that I am compelled to state this is enough to show how bad the culture of perfection is gearing us to believe that none but those fitting the narrow mold of "perfect" and "high-functioning" are worth living their lives.

The truth is, functioning levels are often arbitrary, and offer no more use than a common stereotype when it comes to getting to know and helping people. I have heard/read things far more intelligent from some people who have IQ in the retarded range than some ignorant and stupid things I have heard/read from people with a Ph.D. in psychology. Our definitions of intelligence are flawed, as are our ideas of the inherent relationship between functioning level and value of person's existence as they are.

If you still believe that "low-functioning" people and the mentally retarded are not valuable enough people that they should be given opportunity to life as much as any "normal" person, I suggest that you expand your views. Peruse the blogs of the many intelligent autism and disability activists (ballastexistenz and Rett Devil come to mind). Learn about people by getting to know them, rather than going by first impressions and the words of outside professionals who may not have ever looked into the perspectives of the people they claimed to understand so well.

With regards to the issue of "should we try to prevent/cure people we deem to be less perfect than most", an example of fiction I recommend is the book Flowers For Algernon by Daniel Keyes. It is about a mentally retarded man who wants to be more like his "normal" friends and get smarter and so participates in an experimental surgery to increase his intelligence. I read it in eighth grade, and we had many discussions about genetic engineering and whether we should abort people with disabilities or try to make retarded people "smarter" (I feel that "smart" is a bit of a loaded word). These discussions basically set the foundations for my passion of advocacy I am beginning to take to a more serious interest. Mr. Williams (my language arts teacher of grade 8) was a great teacher and I thank him very much!

My two cents (whatever that means).