21 May 2008

Degraded or Just Degrading?

This is something I typed up at school following a frustrating series of events involving the school psychologist.

Today I got to school late, arriving in time for my second class.

Last week.

I had finished up the IQ testing from the psychologist, and he told me that the following Wednesday during 5th block, that I would be in that room with some other people for further testing, and he asked if I liked donuts. I said no (actually I shook my head). They're okay, but I'm trying to get myself off of sweets for awhile. He asked what I wanted, and after long while, I said, "Goldfish". He said, "Nah, we're not going to bring goldfish." I wondered if he thought I'd meant actual fish, but I doubted it by the way he was acting. I guess he had been thinking in terms of sweets. Never mind the fact that I had no idea what they were for, except that it was supposed to be on Wednesday at fifth block (my second class of that day).

Wednesday fifth block I had a final exam scheduled. So I said this and he said he'd take care of it with my teacher. I was so busy double checking that this was going to get taken care of that I forgot to ask if I should come straight to the room or if I'd wait for a call slip. I told my instructor for that class and scheduled my final exam to take place on Monday instead of Wednesday.

So this Wednesday morning. I was still sick in the morning, and because of having part of my tongue chewed up (must've been overnight), it hurt a lot to eat breakfast, particularly as grains of rice would keep going to the side of my tongue that's sore and red and hurts a fair amount. It takes me quite awhile to get ready in the morning anyway, and my mom had to get to work (she was already running late), so I would take two buses to get to school, despite being tired, having a sore throat, and my tongue aching like heck, making it practically impossible to speak with my mom this morning. But I know I've got to get there by fifth block, which starts a few minutes after ten. So I struggle to keep awake and eat my food and leave for the bus, even rushing to catch the right connections so I could get to school by 10. It wasn't easy, considering that normally it takes two hours by bus to get to school, but if the first bus gets there on time (a very rare occurence) and the second bus happens to arrive less than five minutes after I leave the first bus, I can just make it to school in an hour and a half.

So things work out, and I get to school at 10:00 - the start of fifth block. I wasn't sure if I was supposed to wait for a call slip or just go there right away, so I went to his office to find out. As soon as I get there, without any other word or explanation, he looks away, gives a slight shake of the head, and says, "This is unacceptable" in what is clearly an angry tone. I'm utterly confused. I struggled and worked my hardest this morning to get ready, even without someone to help me brush my hair or prompt me to the things I need to do. Even when I was sick and really tired and had to fight most instincts of mine to get to school at all.

I'm about to get a "huh?" in, when he says, "Where were you? Did you just get here? They were here at 8:30. I just asked one thing, and you didn't do it."

At this point, I ascertain that there had been a miscommunication about when the testing thing was supposed to happen. I didn't even really know what it was, or how important it was (it had almost sounded like a mini-party or something when he'd last described it, and I'd speculated that there was about 50/50 chance that it'd be a "hooray for a graduating senior who's using special services" type thing to congratulate my hard efforts to make up so much work from my classes that I'd been sick during, and the other side of that probability was that it was some testing thing that they were trying to dress up by adding a sweet in it as a reward or something. It was very vague, not only the time, the way I'd get there, but also what exactly was going on or if it was important at all. I motivated myself this morning partially by wondering if it'd show how I did on the IQ test, and however much I question the validity of such a test (particularly using the WAIS on an autistic person with verbal difficulties), I have an affinity for data analysis and was highly curious. That was mainly what I thought was going to happen this morning.

So he is clearly mad, and I try to explain that I was told it was during fifth block, which is why I rescheduled my final exam with my instructor to be two days earlier and hadn't brought my taekwondo uniform with me that day, as I was told it'd last the whole block. He then proceeded to say, "I don't know why you did that."

The most frustrating thing was that I wasn't trying to put blame on something, but merely figure out what was going on, but he was very angry, and it was clear that I was stuck: I couldn't participate in class, but clearly I had nothing to do here.

I was upset and didn't want to start cursing or anything to make my situation worse, so I went into the bathroom and called my mom, who happened to be in a meeting, but I did not know what to do at all, and I felt that if I talked to the director of special services or the other teachers that I'd get more of the blame game, as had happened the last time I'd inquired about when the testing would happen, at a time when I was about to graduate in less than a month and nothing had begun and I had been told that it would start two days before, but no call slip came. Both the psychologist and the director of special services got quite noticeably upset that time, and seemed to think I was being too rigid and pushy, while meantime I was still drowning in mountains of homework packets that were finished with exceptions of some in-class notes but that I couldn't seem to organize, and no one responded to my requests for help with this.

Last year, when the blame game had been put so pointedly to me, it had escalated to a teacher berating me about unwillingness to complete a test which did not exist, and that I had been saying I didn't have a pencil with me, and that instance led me to being close to jumping off the second story balcony, mainly because I couldn't handle everything that's misunderstood always being put down to my being autistic because of course non-autistic people can't have communication problems, and my head felt like it was about to explode and I just needed to dull the emotional explosiveness of the verbal abuse that lasted for almost an hour. Fortunately I ran into the bathroom instead. If they can so easily misconstrue my lack of materials for stubborn unwillingness, then who knows how they would've misinterpreted such an act and put it down to being neurotic or psychotic or something?

So I knew I couldn't confront these staff-type people, not at the moment, so I called my mom while in the bathroom, tried to explain the situation, but it was exceedingly difficult, as the morning announcements were playing, my throat was sore, and the room was quite echoey, in addition to a bad connection and my frustrated emotional state. I really felt like I'd been f***d over.

My mom said that she had about ten more minutes to the meeting, then she'd come to the school and help me sort it out, so when I left her phone call, I called my dad at work and briefly explained some of this, though it was hard to get across over a bad reception. It helped a lot to explain the situation, though, as I could look at just what had happened and was right in front of me, rather than including all the past history of negativity, silencing, and ignoring of me that had gone on over the years in my list of "to take care of in the next hour".

She arrived shortly, and after I briefly appraised her of the situation, we went into his office.

He explained the situation in the context of my extended absences, and the fact that these people who came this morning were supposed to be autism specialists who are booked up from now to graduation, so that they couldn't complete the evaluations. He described me as, from teacher reports, having "degraded" - by which I could only assume was measured by outward behavior such as stims and how I act in crowds. Indeed, in the last four years, while I wouldn't describe the gain or loss of abilities as degradation, I have become more emotionally well, more accomodating of changes, and don't seem to have any more or less of difficulties with the comprehension and expression of communicative speech. While I was more vocal (to my impression) in the first couple year of high school, most of this was echoed from TV, or parts of programmed scripts that did not wholly or accurately reflect my attempts to communicate particular things. In the previous years of my life, I would mask my incomprehension of particular speech, or my inability at a particular time to produce non-echoed speech, by recycling a part of a script, or by echoing something, and masked my incomprehension by guesswork and maneuvering. It is only recently that I have come to shed the pretense that I can do more than in fact I can, and now seek help when I need it for instance in academic classes.

In fact, my increase of outward behaviors such as rocking, is a reflection of my increased ability to regulate my stress, and the fact that I no longer hide where my abilities may be less than other people expected them to be, does not mean that I have suddenly have lost those abilities (which I either never had in the first place or which have been tenuously in place).

It is no surprise that he is speculating that autism (by which I'm sure he means the diagnostic category of Autistic Disorder) fits me - I could've told him that when I was 13 and knew practically nothing about the autism spectrum or what it means to me as far as my ability and disability may be. There is significant overlap between the Asperger diagnosis and the Autistic diagnosis, and if the Asperger diagnosis didn't exist then there would not be sufficient differential diagnosis for them to avoid the Autistic Disorder diagnosis (though likely I would've been instead put in PDD-NOS, despite matching the other two diagnoses). It was confusing at first when he was talking, since I'm used to thinking of autism as referring to the commonality among autistics, rather than as a separate diagnostic subgroup. 

WHen asked if she'd noticed this "degratation" pattern, my mom responded that "well, I've been called to the school to pick her up more, than in the first two years". It is important to note that the primary reasons for getting taken home from the school have been: spinning during independent study, sitting under a desk during animation (this one specifically mentioned by the psychologist as an example of said "degradation"), and being sick. None of these things sound like degradation to me, aside from being sick, but that doesn't have to do with autism, so I find it highly unlikely that this might be what he's referring to.

The use of this term degradation (which occurred more than once) intrigued me, particularly as the medicalized term for being more obviously autistic is regression. Not that I agree with that term either (In fact my senior quote had to do with this), but it struck me as odd.

It is so difficult to talk to these people because it isn't just that they misinterpret things about me, which is to be expected in the human world, even amongst NTs. The problem is that these misinterpretations fall under and are condoned by the structural radar of the psychological and educational systems, and one must alter the structure in order to fully understand the context in which these objections arise.

In this context, objections are incredibly difficult. Online, when debating, even if the other person is so misinformed about autistic rights and neurodiversity that they think it means we want kids to bang their heads all day and sit in institutions all their lives, that still is far easier to correct misinterpretations and alter their understanding of the structures, for in this case the other person acknowledges my position exists, even if they deny the existence of my culture and its framework for interpreting the world. In the case of the psychological and educational systems, however, theirs is default and yours doesn't even exist, and it would take too long to explain it, and most are unwilling to hear such a lengthy introduction to my existence and perspectives, whereas I am supposed to take for granted their perspectives and the alleged fact that theirs are superior and that I am to conform to them.

People who are high school students at my high school, whether they're ADD, NVLD, or NT, they are much better on average to understand and be  willing to listen to my understanding of myself, which is far greater than could be the perspectives of a leading autism researcher, for even such a person has such grand misunderstanding of several key areas of understanding autistic people in  general, much less for this to be applied to an individual.

Perhaps it is that people whose temperaments are more inclined to not reach into another person's perspectives, but are rather much more socially adept when among those whose brains work roughly similarly with regard to social perception, are gravitated toward this field. Certainly the structure of the psychological/educational fields encourages this thinking, and if it was not before present, then surely during this stage it becomes cultivated. One cannot work within such a restrictive system without being altered somewhat by the experience in their perceptions of the individuals with whom they work, particularly if their first acquantaince with such individuals is through this course of study and practice.

This is what is unacceptable.

Note: When transferring this file to the computer, I also got this weird little malfunction:

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I think I will use it as the basis for a language I make up. :)



Bev said...

You are so right about so many things here. I have often been accused of "giving up" or some such nonsense just when I am actually at my best in terms of coping skills. To the uninformed, our ways of regulating stress can look pathological. Then they want to drug us or otherwise mess with our minds. Stay strong. You know yourself and what you need; you won't have these people trying to run your life forever.

Maybe you should send a copy of this post to the offending parties. It is so clearly written and explanatory.

abfh said...

The reason for the donuts/goldfish is that there have been studies showing that people tend to perform better on tests if they eat breakfast first.

The psychologist should have given you written instructions about when and where to arrive for the testing, how to prepare, etc. If he knows anything at all about autism, he ought to know that complex spoken instructions are easily misunderstood.

Unfortunately, most people who are comfortable with speech don't even think about the fact that someone else may not be. It never crosses their mind.

I always carry a notebook with me, and when I make an appointment for something, I write down the details and read it back to the person. "I need to be in this room at 10:00 on Wednesday, is that correct?" This goes a long way toward avoiding misunderstandings in spoken language.

geosaru said...

In fact, I did have my alphasmart with me, and did write a note down. And he knew that I have speech/language difficulties, especially as on some parts of the test I couldn't do because I couldn't come up with the words. I confirmed it multiple times with him, so what I'm thinking is that after I told him about my taekwondo exam on Wednesday that he changed it to 8:30 instead without confirming the change with me. Because I certainly double-checked a lot.

I talked a bit to my dad about it, and my mom filled him in on some other things, and my dad also agreed it is silly that they were so fixed on the idea of me being in a different diagnosistic category than Asperger's. The clinical world of autism is so alien to me.

Casdok said...

How totaly frustrating for you. The so calld specialists have so much to learn dont they.
As Bev says this posts explaines very well all the considerable efforts you have made.

Wishing you the best too :)

storkdok said...

I have never heard of the term "degraded" used in reference to autism spectrum or in medicine. I think that word needs to be explained, at least I would ask for it to be explained.

I can understand how you are feeling, completely blindsided and confused with sudden unexpected hostility for something completely out of your control. I grew up with a CAPD diagnosis, who knows if I was really on the spectrum, it was over 30 years ago. But I constantly had to write notes and carry a calender around with me (no Palm Pilot like I have now) to try to remember my schedule. And people always screwed with my schedule, didn't tell me things changed, and I got the blame. I felt like I had a target on my back sometimes.

Now that I am older, and I understand myself and others better, I just tell everyone if you don't write it down, I won't remember it, it has to go on my peripheral brain, my Palm Pilot. I am still the "absent minded Professor". I misunderstand what people say a lot, I have learned to listen and ask a lot of questions to clarify things. But if someone gets pissy with me, I basically say to myself, piss off, you didn't write it down or make sure it was on my peripheral brain. I'm not perfect and neither is anyone else.

I learned young to take copious notes or I would forget things in the lectures. If I can read something, I remember it. But I have a very hard time with lectures and interpreting what they are saying and what the important points are. My husband, who got me through medical school with his superior skills in listening and interpreting, could listen to a lecture and say what the teacher would test on, give us sample questions. He was always right. I never have understood how he figures that out.

But at 46 years of age, I still have a lot of misunderstandings because people do not clarify things or they change things and tell me but don't write it down. Before I retired, I just followed my nurses' instructions on when and where to be. I can't organize things well. I constantly tell my husband we need a wife! LOL

In my 20's I learned/figured out what was "big stuff" and what was "small stuff". I am still learning to let the small stuff go, getting much better at it. You will find this experience is like the "small stuff" in life. It is hard and took me years, but I have learned not to obsess on experiences like this. I used to obsess for months on incidents like this. Now I visualize it like water dripping off my back and it's gone!

Oh, as a physician and mother, I say to people who make a big deal out of a diagnosis, hey, they call it a spectrum for a reason. There isn't that much difference between Autistic Disorder, Asperger's and PDD-NOS. Each person is unique and has different needs. It isn't the diagnosis that will help to clarify your needs, that is just a list of symptoms. It doesn't say who a person is, what they are like. So to make a big deal out of what the particular diagnosis is is really quite bogus. Does that sound medical enough for you? LOL

It sounds like graduation is almost here for you. Congratulations! You have accomplished a lot! Best of luck!


geosaru said...

Yeah, I knew even at the time that it was a pretty minor incident (I've been put through a heck of a lot more stress than that by adults and peers, and I remember in fact thinking how lucky I was that I could call a day like this one of my bad days).

What really sent the emotional impact home was because this felt like a culminating factor of years of being put down, misunderstood, wrongfully blamed, and degraded, and never having the opportunity to voice my discontent, but to take it with "good behavior".

That's one reason I have this blog. During the school day I may be at the mercy of people who treat me slightly less than optimally, with a dash of condescension, but when I write, I can speak directly to my thoughts and passions without fear of chronic retaliation or further injustice of far greater magnitude.

I learned in junior high that all too often, the boldness that comes with my natural disposition, is often rewarded with making even fairly severe abuses of power look petty and insignificant.

But I refuse to give up the strength to call them out on their ignorance, their wrongful actions, and reserving for a venue such as this those incidents which are infuriating enough to demonstrate a broken system, yet not enough of a violation to take it on with the requisite force to end victoriously.

Anonymous said...

They say that we lack empathy--the ability to hear what another is saying and then respond that you've heard--but actually, they are the ones who lack empathy.

Only they are in denial.

Dr. Tony Attwood, one of the leading researchers in autism, is an exception to what you said. He does seem to understand what we're really going through. He is my new hero. :D

geosaru said...

Yeah, they're not ALL so misguided. It's just that so many are, that it really is a frustrating phenomenon, especially when they point to their degree to discount anything you might want to say. I've gotten that kind of guff from people who don't even work as a psychologist but rather as a junior high guidance counselor.

It's kind of ironic: in my own personal experience, the greater degree of formal education / specialization in autism, the more it is a risk factor that the individual is not going to "get" me in some important way, whereas people who lack that kind of specialization are much less likelier (again, in my own experience) to have this kind of problem, at least not so frequently (everyone, regardless of neurotype, will have clashes with people that involve not trying to understand their perspective).

Whether this not-specialist person is a teenage friend, a relative, a psychotherapist, there is much more willingness to look at my perspectives. I think it's also a power structure thing, as it's not like I encounter the special ed. teachers on a peer level.

bombaygirl said...

I found you through Autism Vox. My son is 4, and is PDD-NOS, and maybe CAPD. Re: your experience with the school staff, I find that even as a neurotypical person, it is very hard to talk to them. They expect conflict and so get their defenses up right away. And once they are up, that's it, really. No getting through to them. I'm glad you have this outlet, and that you have such a good self-understanding that you remove yourself from the situation without getting into the blame-game, like you said. I enjoyed your smarm video, by the way!