07 July 2009

Required Medical Leave PT 2

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

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

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

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

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

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

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

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

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

Adelaide Dupont:

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

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

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

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

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

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

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

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

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

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

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

Required Medical Leave

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

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

Issuing a required medical leave of absence.

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

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

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

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

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

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

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

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

Returning from a required medical leave of absence.

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

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

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

(c) Washington State Code Reviser's Office

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

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

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

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

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

20 January 2009

No Shirt, No Speech, No Service?

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

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

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

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

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

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

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

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

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

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

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

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

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

16 October 2008


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.