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.


Club 166 said...

I actually suspect that this college's rule was originally intended to give them a mechanism for weeding out acutely psychotic students who they thought might put other students/faculty in danger.

What I am afraid of is that it is so vague, and leaves so much to their interpretation, that it might become a vehicle to weed out anyone remotely perceived as being "different". After all, better to weed out several harmless autistic geeks than to let one potentially violent psychopath stay.


geosaru said...

My suspicion exactly. However, due to all the discussion made about preventing active shooters (since they didn't approve the equipment that would allow the police to effectively deal with a shooter who is already shooting on campus), including mention of counseling, people who act autistic may be mistaken for being "unbalanced, disturbed, psychotic", and referred to the counseling center, possibly resulting in a required medical leave in they find out / decide that the student is too unusual looking or has significant independent living issues, and rather than going to accept or assist, may respond with fear and exclusion, placing autistics and others who are outside the norm but do not pose a significant threat (as the guidelines are sufficiently subjective to be open to interpretation and abuse along these lines) to self or others.

So that is what I meant, that I fear that this growing climate (much like people who seem to think that they can prevent all diseases and never take a medicine in their lives) of encouraging "prevention" of an attack above all else, as I had predicted during the debate about the earlier proposal, would likely be implemented in such a way as to create suspicion of those who act unusually yet harmlessly, which negatively stigmatizes people. This was even before my GAF came back as saying I am relatively low functioning (even though the dx is HFA), which was a bit of a surprise being told that I am so very high functioning by all these school people (not that I place much weight on the functioning labels, although that one was at least based on a test of how I was at the moment in order to access services, rather than an exceedingly arbitrary impression based upon an assessment of my academic intellect).

This problem I see is that the culture of rooting out the weeds is being encouraged as prevention. 'If only we could counsel them'...and then boot them out. But while it does have really vague wording that I could see the danger of its ambiguity had it been introduced before, I see how even a totally non-violent, non-suicidal person like me could be booted under the "danger to self" clause, since the DVR report included the health and safety dangers of my cluttered room (it was severely cluttered, but what I needed was a better time organization system and some help in the short term to get it in order, not to be taken out of school - I tend to get a bit restless when not constantly involved in stuff, a bit like when Sheldon Cooper of Big Bang Theory lost his job, if you've seen it, or if you care to wiki The Luminous Fish Effect, although perhaps a bit moreso).

geosaru said...

Addendum: in fact, my room was so cluttered, that one of the police officers, when going to my room in assisting me to an ambulance for a medical issue, yelled out that my room was a filthy pigsty. She repeated this loudly, and from one room to another, just talking above a medium voice, you can hear EVERYTHING. It was mortifying. Declared a safety hazard, there were some student workers sent to take some clothes or stuff off the radiator vent that fell there behind the desk, and left a note on the outside of the door about removing the pile of clothes and plastic, but it wouldn't be until later when my mom would visit that my stuff would get cleaner.

Adelaide Dupont said...

Joe: I didn't like that last sentence at all. It made me think of weeding out six people to get the one person out. The 'trolley theory' it would be called in logic and philosophy. But there! I act on my emotions!

Fortunately I was able to have some counselling at the end of 2005, but I did not receive psychiatric care until June 2006. (And that was outside the institution I was attending at the time). I was able to walk away before I was acutely psychotic, though I had already some signs of depression, and for that matter mania. It was in fact my first (and hopefully last) psychotic episode.

No, haven't seen the Big Bang Theory - yet! Would love to.

The whole clutter thing: reminds me of the material of Passive-Aggressive Notes. Fully appreciate that in your situation it was just not funny. Though it may well be a distraction.

Monica Swain said...

I know you don't know me but I found your blog on a search engine for Autism bloggers and I had to tell that you your blog gives me hope for my six year old. Thank you.