Astrid’s Journal

Labels don’t modify a situation, they might just clarify it, so is the whole ASD thingy that recently emerged - note that this is after ten months of being at training home -, something about changing paradigms, or is it about conflicting paradigms? I must say I begin to think it’s the latter, in that there’s always been some form of conflict amongst the staff - notably, between Renee and Arda - about the “realism” of my situation. To put it very sharply, I would be not at all surprised if Arda didn’t even agree to the whole thing, just like Renee was only echoing Arda when “they” decided I couldn’t say I had poor sociaal skills anymore after the March 6 multidisciplinary discussion. If she does agree, it’s strange that she’s about the only one who openly defied me when I assumed I might have an ASD up till last Monday, when she clarified “their” plans from Friday to me. Now even if there isn’t disagreement amongst the people here, there’s still disagreement between them and my parents, so it still requires that I take a stand. What will this stand be?

I think there are two factors important to the situation and how I’m going to approach it:

1. I’m really getting stuck in my current situation and am at a loss for strategies of changing it;
2. Clarity is far more important than a label.

The former is my reason to agree to the plan; the latter is my reason why I’m refusing to indulge to the ASD obsession I was having in 2002 till 2004 - for so far that’s possible in a few weeks.

Of course, I’m well aware that how you voice your request for professional evaluation, changes its focus and, thereby, its outcome. The three different evaluations from 1997, 1998 and 1999 all pretty much illustrate this: I hadn’t changed all that much in these eighteen months, but the fact that each time the aim was different, caused there to be three different outcomes. On the other hand, vague questions will get vague answers, as my own experience over the years illustrates. So we have a rather focused question, but I don’t want to be as paradigmatic as I was in 2002 to 2004. Where do I stand?

The most logical answer to this question, obviously, is that I stand on the way I experience things and what I know about my behavioural, social and communicative characteristics. I don’t know what is and isn’t relevant and refuse to think about this, but here are some things that are part of my reality whether they’re related to ASDs or not:

1. Regarding the ASD suspection itself: my paradigms about my situation are very dependent on what others think. That’s why I started suspecting an ASD in the summer of 2002, after my father had said I might be autistic, and stopped my obsession after my mother said “she’d known for ages that I wasn’t” on April 11, 2004. The same goes for other paradigms, like the blindness-focused (1993 etc.) paradigm in 2001/2002. However, each paradigm offered insight in some aspects of my situation. If I’m autistic, I’m not *only* autistic and now that I’m blind, that isn’t necessarily the explanation for everything I experience. That’s why I adopted a “non-paradigmatic” stance in early 2006 - though the word comes from my resistance to being labelled DID based on the “ladies”. There is no particular incident that got me to agree to the recent ideas; the general reason is that I’m noticing I’m getting stuck in my current situation and don’t know to get unstuck (if that’s a word).
2. As for the anger/frustration problems: they’ve always existed in some form or another. When I lived with my parents, I used to be quite aggressive to my parents and sister - mostly verbally, but I’ve had some experiences of physical aggression. This was mostly cause I either did not understand a situation or cause things weren’t going my way. In as early as 1996, my parents requested (or were offered) professional help for this. In my memory, the problems existed before then, but I cannot validate that. On the other hand, when we look at a shorter term, the problems have increased noticeably. For example, I’d already been at training home for four months when I first broke an object intentionally.
3. Regarding social skills: the first time anyone ever mentioned the word “social skills” to me, was 2002, but I don’t know if anything changed shortly before then that made Mr. De B. come up with it - the antecedent was my troubles in ninth grade that, in my opinion, had nothing to do with social skills. By early 2003, as my tutor was expecting I change my social behaviour, I determined to think better about how I acted in different situations. This worked out to a limited extent. When I admitted to not understanding these situations, we got some situations clarified and settled, but the effect was limited cause of the limited frequency of the situations we settled - which were usually really difficult situations that had gone far out of hand. An example was an argument with a fitness instructor (the one from my old fitness centre) in early 2003; after this event and discussing it with my tutor, I had clear for myself what I should do next, but the situaiton (or one similar enough to it) never occurred again. I learnt more basic “rules” cause my family, classmates, teachers or staff at training home informed me of them or by reading about them online. It may surprise Renee and Arda, but introducing oneself (Renee’s pet topic in the early weeks of training home) was in fact one of these, though it was a relatively simple one.
4. Regarding social interactions: basically I don’t have the slightest idea of my style of doing so - the only reason I mention it, is cause, with an ASD paradigm, it’s an important thing. Some people say I’m one-sided, but many people don’t say this. Other alleged characteristics are vague, so I really cannot say much about this without resorting to any paradigm - which would essentially mean not being authentic, and I still prefer honesty over paradigms.
5. Regarding asking for help: even between 2002 and 2004, I never considered the “kept from” or “locked up inside” situations to have anything to do with ASDs. Not understanding a situation may be an issue in some of these examples, like yesterday’s argument about getting a student counsellor’s phone number: the way I understand it, we’d agreed that I would be looking for the number with Jutta at Saxion’s open day on Saturday. Before that, I remembered the number might be in the freshman guide, which I thought was easier, but it wasn’t there. After my attempt at getting the number on Saturday failed, I resolved to try it on Monday, but really had no idea whom to ask and when and the few situations I could think of (ie. asking Dannie or Elma), I didn’t find a moment to. Yesterday, Renee got really angry cause I didn’t have the phone number and told me to “just ask”. One factor was that I wondered when and whom and where and how, but there is another factor contributing to this that I never, ever connected to a lack of understanding, let alone any of its possible underlying factors, but that is simple (well, not so simple, as I haven’t yet overcome it) anxiety. The same goes for most situations where I get “locked up inside” and when not understanding is a factor, I can usually ask for clarification. I was in fact more than a little surprised that Arda got to mention the ASD thingy on Monday after the discussion with Elma and Dannie when I’d gotten really “locked up inside”, cause I don’t know what that has to do with ASDs.
6. Regarding expressing feelings or concerns: this is the big “You folks don’t listen to me” topic. I wanted to put it with the above topic about asking for help, but decided it needs its own topic cause it’s a little more complicated. On Friday, I told Renee why I feel they only listen to me when I’m acting out, cause I have a lot of difficulty expressing myself. There is some “locked up inside” component to this, which is why it’s far easier to express myself through writing than when speaking, but the “I don’t understand” factor is bigger than when asking for help, especially with practical things. The thing is, I really cannot think of any way to express concerns (even practical ones that aren’t direct requests for help), even though Renee correctly says she and others will allow me to. On the, obviously extremely difficult emotional level, there was the time when I cut off my hair. A few days later, Arda assumed I’d cut off my hair to show the folks that I wasn’t doing alright when they thought I was. I’d never really consciously thought anything like “I can’t make myself clear in any appropriate way, so let’s cut off my hair,” but of course it was an expression that got noticed. Like I said on Friday, what I have against the attention-seeking theory is not the idea that I seek attention - of course I do and this may be excessive, but well -, but the idea that I intentionally behave badly with the purpose of seeking attention. By the way, I assume this is a pretty common problem amongst people my age, especially the uncertain ones like me, adn its main problem is that it’s always gotten so far out of hand.
7. Regarding rigid behaviour etc.: that’s just something I have to mention cause we’re discussing an ASD paradigm. It’s my sister’s only knowledge of ASDs - “Isn’t that that you can’t get used to new things?” -, my father’s main reason for calling me autistic - usually, when I stick firmly with rules or plans, but I don’t know what exactly makes it a problem instead of a positive quality -, the thing I got most lost in looking “creatively” at in 2002-2004, and I really don’t know its scope or its relevance to my situation, so I ain’t even going to go into this. Some stereotypical behaviours of mine, including some (former) self-injurious behaviour, are in the DSM-IV within this category, but some of it falls within the scope of “blindisms” and some of it is directly related to my poor frustration tolerance.

What else is there to mention? I can’t think of anything except for some things in which it’s not whether I have the characteristic or not, that determines whether it’s an ASD trait, but how you interpret it, so I’ll just assume that there are no other things I need to write “objectively” about before I might take a biased stand based on what others think (or suggest).

Spoke my parents and sister this evening. My mother was the first to call me and was really vague about how I was doing at training home, why I was behaving badly and all. She said Renee had called, and I wondered what she’d said. On Friday, I agreed to a recent plan to contact the local mental health centre cause they think I might have a form of Autism. It later turned out that’s what she’d called for, but my mother didn’t say so, so I didn’t mention it. Later, I called my father to ask what he wanted for St. Nicholas (a celebration on December 5). Yet a while later, my sister called and almost immediately said: “I heard the folks want you to get tested to see if you’re autistic?” She doesn’t know what ASDs are and doesn’t believe in labels, but the way she presented it (plus the simple fact that I did agree with the idea) forced me into some defensive position. You see, I wish the world worked without labels, too. You know my support of natural multiples, who most definitely shouldn’t be labelled DID, to illustrate this. The thing is, these people are functioning and, hence, would indeed be damaged by labels. I don’t deny that labels would be damaging to some. I cannot do anything but agree with my sister’s allegation that, if I ever want to get hired, an ASD label wouldn’t quite be to my advantage. Neither is the label of blindness. The thing is, I can’t make myself sighted when I want to get a job just like I can’t make myself function better socially and communicatively (whether that needs a label or not) when I want a job. My school experience pretty much illustrates it all, and that’s why I was disappointed and frustrated so much on Monday: I really wanted to go into this year cause it interests me, so if I could’ve turned off my social/communicative oddities, I would’ve done so. The thing is, I can’t. My sister doesn’t believe that, by the way, cause she is convinced I’m only acting this way cause I’m shy. I don’t think that’s all, but well.

When people don’t function, will labels still damage them? In one particular situation, they will, which is the situation of excusing oneself cause one has this or that disability. I never, ever wanted to use this statement, and that’s a drawback to possibly being labelled, cause the reasons I have for not functioning, were never related to blindness, but always to why I (and most recently, others) have come to think of me as having an ASD. Still, you might wonder how much is giving reasons and how much is seeking excuses and differentiate between these. You will find that there are far fewer people who genuinely seek excuses than there are who give reasons - and, within my own situation, excuse-seeking has existed (not on blindness, but on social/communicative things) but by far not as often as genuine statements.

Does clarifying really help? Of course: it will allow you to seek alternative means of achieving things other people do or that you previously did. Parents will have to admit that their daughter has low vision to get to have her instructed in braille and the use of the white cane. If she’s treated like any sighted kid, she may seem to achieve on an equal level, but will fall behind in high school or college. Please note that it is not required to have an ophthalmologist see that low vision kid to have the parents realize that she needs braille and cane travel instruction, even though an ophthalmologist’s diangosis is required to actually get these services. The same works with ASDs: of course you don’t need a psychiatrist’s or spychologist’s diagnosis to browse the Internet and figure out strategies that work for autistics and may work for you - some strategies we used in eleventh grade were directly from Tony Attwood (Australian ASD specialist -, though a diagnosis would help you figure out these strategies and, possibly, get the necessary third parties involved. If you’re fine with your own situation - like I was to some extent in 2002 till 2004 -, there is no need for a professional to tell you whether you have the label you think you might be having (ie. an ASD), and this goes for mental health disorders more so than for medical disorders. The thing is, even though I find it hard to admit, I do not feel I’m fine with my own situation. I say this in really sharp terms to my sister this evening, which may make it unbelievable - if she ever believed I was having difficulties that were not due to other people imposing them on me. I’ve become more and more confused as time went by instead of less, cause my actual situation deviated more and more from what I thought it should be like. Why is this now? I think it’s related to the fact that, even though my parents claim to hold me accountable, really, they ultimately didn’t. Initially, they did, of course, but as the situation proceeded, they often jumped in. The Van O. issue was the first time when they didn’t step in and, eventually, my tutor did, though both he and Mrs. Van O. greatly simplified the situation for me. I don’t know if this makes my communicative/social difficulties to be something learnt - it’s possible quite well -, but how will I figure out this if determination doesn’t work?

I have some big problems with some of the things Renee seems to have said. Like, she, according to my sister, said something about them being able to advise me against “certain things” with labels. Well, she should know better than this: I don’t listen to any advice, no matter how “realistic” it may be according to her, if I disagree. She should also know that she shouldn’t have said this to my parents, who already imagine their big dreams of me fading away. Their big dreams have been fading away ever since early 2004 already and that was exactly when I stopped caring about labels, so there.

Yesterday, I was having a very difficult discussion with Elma, Dannie and Arda. It started out with the usual studying stuff and that not being too difficult and blahblahblah. Well, tell me something I didn’t know yet. Then it got down to the social side of it all. For some reason, I’ve been thinking forever that I was doing better there than at home or formerly in high school without realizing how this was not my achievement, but my classmates’ sense of responsibility and kindness. Even though I couldn’t think of something being better here than it was in high school, I really didn’t realize that what was better, was the fact that my classmates aren’t (yet) letting me down. Honestly, I remember this same thing having happened in the early days of seventh grade; the main “problem” was that it was over after only a few weeks. Not that I was criticized - that didn’t happen till two months into the school year during an officially scheduled discussion on the topic -, but I was simply left to whomever was “on duty” (remember the schedule we had for this) that particular day. We have no schedule for helping me get to unfamiliar places now, and it’s mostly come down to pretty much trhe same four or five people.

The thing is, I never initially asked them to walk this route with me. There’ve been a few times when I asked them to wait for me and walk with me, but the very first class day it was their initiative. This was in part complicated by the fact that I’d insulted Renee and she’d left, so I didn’t know about the situation, but I’m pretty sure I wouldn’t have taken the initiative if it had been clear that I would have to get home by train, either. After a few times, it became more or less normal that the same three people were on the train with me: two girls from my group and one from another. I could’ve walked the route alone, I guess, and I would’ve done so after the psychology test if I’d been able to do it digitally and would most likely have needed some extra time. It never, for some reason, occurred to me that perhaps the girls were feeling it as their responsibility to make sure I would get home. I never, as far as I know, made it their duty like I used to way back in 1999, but Dannie assumed they were still feeling responsible for the situation cause I never clearly told them I either wanted help or could get home by myself. The thing is, really, I liked them travelling with me, but technically I can manage on my own. I’ve always been confused about the situation of being nice versus feeling obligated to help. I don’t want the latter, but greatly appreciate the former - though I’ve long realized that being nice can be a duty, too, as my sister’s often hanging out with me during lunch breaks in high school illustrates. I feel really troubled admitting to this feeling, cause in high school I resorted to withdrawal after I’d learnt all necessary routes and so didn’t need help anymore. I can ask strangers for the right classroom without freaking out now - or at least I think I can, or I should be able to -, so, really, I could use the same coping mechanism again. I could quit my studies cause a withdrawn girl doesn’t belong in a social environment like the AMA (my academy). Arda thinks it would have major impacts if I did, but I’m not sure why she thinks so, cause I’ll not be doing anything related to this anyway - they’re on “the list”, of course, but mostly to boost my ego - and I’ll be admitted to college/university based on my high school diploma anyway. I might be kicked out of here if I quit, but well, who cares? I’m only insulting staff and breaking their things in temper tantrums anyway. But I decided, at least for yesterday, to stay in the programme and I went to this new class called career psychology. That is really a stupid class and I have no idea what its use is. Besides, I’d missed half of the class already anyway.

We had job field orientation, too, and Dannie wanted to discuss the helping / unclarity / etc. thingy with my group. She gave a short introing thingy and I tried to add stuff, but got pretty much “locked up isnide” - though not as badly as I’d gotten earlier in the afternoon when she’d come up with the idea. I still don’t understand the situation quite a bit at all. I didn’t want to interpret the statement that I wasn’t clear about what I needed as meaning they weren’t willing to… well, whatever. Can’t get my thoughts clear on this. The whole discussion reminded me of that discussion we’d had in 1999 and it felt kind of annoying cause, at the time, just like yesterday, I really didn’t know what they wanted from me or how I could change. I still don’t. I know they want more clarity, but I’m not that good at imagining what they might or might not think of what I might or might not need. Michel, a guy in my class, gave the example when they pull me away from almost bumping into something. I told him to just let me bump into the thing, but apparently I wasn’t clear enough. I’m really not sure what we got at except that Carmenchita (one girl I travel home with) was kind of surprised about the highlighting of travelling. I got confused, cause apparently she and Elles didn’t mind travelling with me. I’m kind of scared to hope for this: that, while I told them yesterday that I will technically get home if you just leave me alone, they still don’t mind travelling with me. It feels kind of confusing: it’s the opposite of clarity and yet it has some positive connotations. I wonder where the line is between helping and just being nice, and whether you can ever really be just nice to me without feeling a duty to help. Carmenchita told me yesterday evening that we travel together cause it’s kind of logical if we all need to go the same way. Still, I feel kind of weird about this, but I decided to interpret it as something of being nice and hope she didn’t interpret it as something else. Man, this is confusing.

Yesterday as I found myself thinking about college/university programmes, living arrangements (not written about that but I thought about it) and the actual situation with my social/behavioural problems, ie. “realism”, I realized that “realism” can be looked upon in several ways:

1. Collecting every little detail about my situation, from my high school GPA calculated to three decimals to exactly how many minutes it’ll take me to clean the bathroom;
2. Believing that, with time and experience, the right picture of my situation will form itself;
3. Actively experimenting, for example by experimental scheduling, in order to create the most workable picture of my situation;
4. Exploring different pictures to see which fit(s), and/or letting others do that for me (ie. label me).

All of these have their good points and their bad points and have, to different extents, been used by me in the process of getting my situation clarified in the past nearly nine years.

In the early days of trying to clarify my situation, I focused on my behavioural problems, cause at the time (1998), these were what blocked my transfer to regular educaiton. At this moment, I wonder how bad they really were, cause I cannot remember having been physically aggressive to people or objects nearly as often as I’ve been recently (to objects) in the past four to seven years and my difficulty communicating didn’t become really serious till sometime in late 2005 or even 2006, but that may’ve been cause people didn’t demand as much self-sufficiency in my communication as they do now and/or the people in my environment were more eager to react to inappropriate/unclear ways of communicating. Probably, still, the behaviour was quite bad, cause I used to identify with a mildly intellectually impaired and autistic adolescent who was in the news in 1997 or 1998 cause she was tied to her bed in an institution cause no-one knew how to handle her behaviour. In fact, I think I have to admit to wanting my behaviour to have been less severe then than it is now, cause a clear increase in behavioural problems still allows for a decrease. That’s a form of second-type approach logic, which is in different ways the opposite of the first type and the fourth type: it’s opposite to the first type in that it’s looking at the whole picture instead of the details, and it’s opposite to the fourth type in that it uses an individual situation that should be unfolding itself instead of labels that should be stuck on me or that I should find. In any case, in my approach to the questions of 1998, I used the fourth type of “realism”, as the identification with the girl in the news illustrates. I didn’t know about labels at the time yet, so I just used the terminology from the 1998 report and made up my own fictional interventions that I thought might work if only there were people willing to recognize I had an actual problem.

I kept my half-scientific labels (interpretations from the 1998 report with the knowledge and understanding of a 12-year-old) till sometime in 1999 just after starting regular high school. What approach I started using then, I don’t remember, but it was less label-focused and more situation-focused. Like, in 2000 when I was in Russia acting curtly (not aggressively, I might say), I explained the behaviour from the point of view from the actual situations in which it was happening. At the same time, I started looking historically at my behaviour and came up with the famous 1993 thingy, but that never got to be a real theory till sometime in the second half of 2001. Mostly, the way I looked at my behaviour was similar to the way I’ve been looking at it recently: what factors in the current situation contribute to my acting this way? I classify this as a “type two” approach cause it is very open-ended: this is my situation in the here and now and that may or may not remain the same for a certain period of time. The advantage of this way of looking, that is the main reason why I’ve used it primarily in 2006, is the open-endedness: it assumes that change can always happen if I set my mind to it or if I learn certain coping mechanisms. It is an attractive approach, cause it claims that I can essentially become whoever I want to be or think I should be or think I can at least be, or whatever. That may sound like a drawback cause I don’t know who I want to be, but actually, it isn’t, cause I am far more in control of my situation if I say I behave badly cause I am confused about my situation, than when it’s the other way around.

In one sense, the approach I silently used in 2006 - and that I used between 1999 and 2001 -, is not looking for “realism” at all, but hoping for some magic change to occur. Look at the college programmes in yesterday’s list: even though there is no consistency amongst them and the most important confusion revolves not around *which* programme I want to enroll into, but around whether I can actually hold on in college at all, they all have a more or less relevant social component, which is exactly my weakness. There is no point in being confused about not knowing into which of these seven (well, two) programmes I want to enroll in, even though this is exactly what has triggered several recent tantrums. There is far more logic in wondeirng whether I could actually hold on in college and whether my two selected programmes aren’t still too socially demanding for me and whether I feel there is any use in studying anyway and in what living arrangement I belong. These questions cannot be solved in a type two approach, cause this approach includes neither decision-making (which is essential, cause neither labels nor details have any intrinsic value as for their implications) nor definite conclusions (which are necessary for predicting my future), but it *is* really appealing to use this approach for an indecisive person like me who also has a lot of inner contradictions in herself, cause it means a kind of “anything goes” approach - which is simply not true.

By 2001, I started using a more historically-focused approach to my situation, with the well-known 1993 and adjustment to blindness etc. paradigm at the centre. It was more definite than the former paradigm, but was still grounded in the belief that anything that has been learnt, can be unlearnt. This is, of course, not in line with the psychodynamic perspective the theory presumed, but at the time I hadn’t heard of that yet and was using “here and now” problems related to blindness and all that as the focus, where I presumed the general approach to be learnt years earlier but never forgot that the behaviour took place in 2001/2002. I was more clear in terms of broad theories for explaining my behaviour than I’d been before, but still used a pretty open-ended approach to how my situation would evolve, in that I believed that I could change my behaviour radically by learning better coping mechanisms, and I in fact believed that learning better coping mechanisms was a relatively simple thing if I had the support/resources for it. In early November, 2002, as I wrote my article What I Realised, I genuinely believed that realizing some of my recent thinking errors could get me to pretty radically change my situation. This is the exact approach I was using in October, 2006, too, even though the 2002 type of looking at “realism” can be said to be the second, while in October, 2006 it was obviously the third. I think these approaches lie on a continuum.

In June, 2002, of course, another paradigm emerged, which was the idea that I had an Autistic Spectrum Disorder. This led to a revival of the same approaches I’d been using in 1998/1999, but now with a lot more knowledge of official terminology and the perspective of an intelligent 16-year-old, in other words, a lot more defined and refined ways of looking at myself through ASD-coloured glasses.

At the same time, the way I was looking at myself scared me, cause, as I said then, “I already have a story”. The actual thing is that an ASD, or any other mental health problem (by the summer of 2003, I was obsessed with about half the DSM-IV, but ASDs remained my main concern), creates a definition of my situation that is incorrectable. I resisted the idea that I might be autistic on the basis that an ASD is a pervasive part of one’s personality and you can’t “unlearn” an ASD (unlike what the behaviourists think). Still, as 2002 and 2003 went by, I got more and more accompanied to the idea that really, behaviural problems, social awkwardness and communicative difficulties were an essential part of who I was and how I had to approach my situation. I never really got to approach my situation in any way, cause the ASD thingy was only one picture I’d selected to be “me”, while others had selected completely different pictures and weren’t going to allow this form of “realism” to dominate. Besides, I wasn’t busy thinking about my future or anything yet - all I wanted was an explanation of why I was getting stuck everywhere in the here and now.

Of course, this paradigm ceased to exist on April 11, 2004 after already having been dormant for several months, cause by then I realized that I’d gone too far in my obsession with ASDs. Still, I realized that my difficulties were real even if they didn’t need labels. I still used the fourth type of approach to “realism”, cause I still believed my profile was defined even though it didn’t have a DSM-IV label anymore.

I kept using the labelist focus - or the “selecting a picture” way of looking at my situation - till sometime in late 2004. Then I learnt about rehab and decided this might be a good way to improve my situation. Of course, I was mostly talking about my practical skills deficits, but in 2002-2004 I’d pretty much presumed my daily living skills problems being due to a disorder (other than blindness, like ASD), too. Also, by then, I adopted a more blindness-focused paradigm about my behavioural problems, so it fit quite neatly in the general way of viewing my situation.

I started future planning in late 2003, but never really took it seriously. I had gone to the info evening in 2002, of course (that same thing that was last Tuesday), but I’d only been to psychology and pedagogical studies info rounds (cause the ones I actually wanted to go to weren’t being held) and was wise enough to conclude that I wasn’t the type of person for them, even though I found them interesting of course. So planning actually started with my visit to Radboud in 2003, and I immediately picked English/American studies as my major and never let go of it till March, 2006. That was - and is - not the main problem: the problem was that I couldn’t cope in a college environment and I couldn’t live on my own. The first was cause, in high school, I didn’t need to be as communicative / assertive as I would have to be in college (cause, even though initially my parents always expected me to solve my own problems, they almost always ended up solving them for me), and the second was cause of my lack of daily living skills. So I went for rehab and completed the programme but, till about my fourteenth week, never let go of my determination to be an American studies major in Nijmegen and live on my own there by September, 2006. This was my parents’ perception of me and it was my teachers’ perception and it was what the NFB expected blind people with no other disabilities to be, so there.

Of course, the question whether I had these additional disabilities, remained, but more silently than it’d been before. I used the hydro thingy in 2005 to dig into possible neurological complications of my prematurity, but stopped this in January, 2006 as I got to know a fellow client here whose hydro led to brain damage and to whom I didn’t want to compare myself. It wasn’t a major factor in my looking at myself, cause that is not what rehab or training home were/are meant for.

My first use of the word “realism”, of course, relates to my vision impairment and was of the first type of approach: by now, I feel ashamed about all the detailed questions I asked Kira last year, that really hold no relevance. Vision and the lack thereof is the clearest example of why details say nothing about their implications: it was the fact that I, apparently noticeably, used my vision that sometimes made it necessary to explain, not the details about my visual acuity or field of vision.

“Realism” got a broader meaning in the spring of 2006, when it was in my list of reasons why I didn’t want to go to university by September yet. I thought that “realism” could be achieved eventually, but I kept using the second type of approach for half a year and never got a step closer to actually clarifying my situation. This is in part due to my black-and-white way of thinking - whatever I found was either too easy/low-level or too difficult/high-level or both, so I defied any attemtp at clarifying my situation routinely -, but it is also related to the fact that my situation is the integration of my behaviour, my abilities and difficulties, etc., and these have been quite unstable over the months, and can look different depending on how I approach them, so I think that if I keep using this approach, I’ll never get a step forward.

In October, I started experimental scheduling, which is the third type of approaching “realism”. This is based on the idea that, no matter the technicalities (labels and/or details) of my situation, what I make of it all depends on decision-making through experience. It is different from the second approach, in that experimetnal scheduling requires actively manipulating the situation, while achieving “realism” solely through experience is a passive process. I fell back onto the second type after several weeks, but realized that this was as much my decision as my decision to schedule experimentally had been - or, at least, I couldn’t blame anyone else for it. This has, for me, triggered a “type four” tendency, in that, if my current situation is “realism”, I want to know why. I’ve always wanted explanations and I in one way hate that, but it makes some sense, in that everyone I know says that a blind person whose only disability is blindness shouldn’t achieve as little as I do. I’m not sure if my current situation is the final one - I still hope it isn’t - and some form of explanation (like “You’re blind, so …”) cannot solve this, but that’s why I said that each of these four approaches have their good parts and their bad parts.

Requested journalism flyers from Windesheim (Zwolle) and Utrecht’s School of Journalism. The former turns out to have a less strict selection procedure than I thought: it is something called a “numerus fixus” programme, which means students will be selected based on lot, but the website says mostly all students will be enrolled and I might even have an advantage due to my high GPA in high school, and there doesn’t seem to be some admission exam. Other great thing is that Windesheim has an accelerated route (three years instead of four), should I turn out to be a great student (which I ain’t, but well) and you can easily go to graduate school at VU University in Amsterdam (they have no Bachelor’s programme in journalism, but they do have a graduate programme). Utrecht, by the way, does have an admission exam; don’t know details about their programme. Threw away communication studies flyer. Said at least ten times that I had to throw away the pedagogical studies and social work and services flyers but never did. When do I finally realize that there isn’t a social, communicative me hidden under some cover of uncommunicative, socially awkward and behaviourally disturbed me-ness? The good thing is that realizing something at the gut level is not required to work on the practical implications of this realization. So I reduced the number of possible college/university programmes to four. I have some feeling that eventually I’ll throw away sociology based on interest (or the lack thereof). Remaining are three, of which I’ll probably throw away social legal services, too, based on the social component and not loving law all that much anyway. Makes for only two, with one (linguistics) having a potential social component but being more theoretical and the other (journalism) having some social component that is not too demanding and being very practical. That’s a question I haven’t answered yet, but two is a lot less than seven. In fact, these are two of the original programmes selected just after I started doubting American studies, the only other being philosophy, which I am *only* going to major in if I realize I really ain’t fit for anything, just as a form of keeping myself occupied cause I can’t sit in my room doing nothing 24/7. Hope I’ll still think this way tomorrow - but am afraid I won’t as Monday, school day, is the day of the week when I am most naive about my social abilities. Still need that student counsellor folk Renee requested I get contact info for? Not sure how to get contact info (it wasn’t in the freshman guide or at Saxion on Saturday), so probably won’t have it by Wednesday anyway.

You Are 40% Politically Radical

You’ve got a few unusual political ideas, but overall you’re a pretty mainstream person. Chances are that you’re turned off by both the radical right and looney left.

The Socialist Party is considered radical left in the Netherlands - at least, now that it has 25 seats (probably lost one to Labour due to Dutch citizens abroad voting) in the Dutch lower house. There was a programme on TV this evening in which voters for the SP as well as Wilders (radical right) were interviewed cause it’s believed that the increase in votes for the SP (from nine to 25 seats) and the fact that Wilders got nine seats as they first participated in elections, signify unsatisfaction with established parties like the 26 seats for the List Pim Fortuyn (which has meanwhile lost all of its seats due to fighting amongst the members) did in 2002.

People complain about the election outcome and the difficulty in forming a government now. Maybe, for them (but not for me!), the U.S. system is better. Figure how I should vote.

You Are 4% Republican

If you have anything in common with the Republican party, it’s by sheer chance. You’re a staunch liberal, and nothing is going to change that!

Hmmm, I’m a socialist, but after the recent elections I feel more ashamed of admitting this than I did before, cause it’s becone synonymous with “Fortuyn” for the reasons I mentioned above. GroenLinks has a far better image, in this sense.

You Are 76% Democrat

You have a good deal of donkey running through your blood, and you’re proud to be liberal. You don’t fit every Democrat stereotype, but you definitely belong in the Democrat party.

Well, I’m a little more conservative than the Democrats. I’ve alwasy hated the idea that “liberal” is left and “conservative” is right-wing, cause it just doesn’t work that way in the Netherlands: the SP is more conservative than GroenLinks, but it’s also more socialist, ie. “left”.

You Should Have Voted for Ralph Nader.

Sorry - Shirts and Shoes are Required in the Voting Booth.

One word: duh! Even so, in the U.S., where “strategic voting” (eg. voting Labour cause you hate Balkenende for prime minister) is the norm, I would most likely just vote Democrat except if I lived in some state where an independent candidate runs a good chance of winning anyway.

Scarily accurate. Except the thing about a best friend - I have no friends, but quizzes never ever get it that there *are* people out there who really are too unsociable for that, so I always pretend I have friends when it’s needed to fill out questionnaires.

How You Live Your Life

You seem to be straight forward, but you keep a lot inside. You’re laid back and chill, but sometimes you care too much about what others think. You tend to have one best friend you hang with, as opposed to many aquaintences. You tend to dream big, but you worry that your dreams aren’t attainable.

Went to Saxion’s open house today and read info flyers with Jutta. I feel kind of confused about this, cause, even though I was doing alright today, I know that in general I’m not functioning all that fine and this is not completely a new thing. Really, is college/university going to be about “realism” or is it about making decisions, or is it about both?

I didn’t start being troubled about my college/university education cause of decision-making problems, that are thought to be the most significant in the situation now. The reason I was troubled, is cause I doubted my ability to study in general and at university in Nijmegen for 2006 in particular. If it had been about decision-making - ie. “I just don’t like American studies” -, I could’ve visited some info rounds in March/April and revised my decision before it’d be too late. In fact, I did get a college education arranged for this year, so there’s no reason why I couldn’t have done this as an alternative. Well, there is a difference, in that this is a one-year programme, but if it were all about decision-making, I could simply have said that I was going to do this full-time now, moving out of training home and going to see what I would study next year - something related to this or not. After all, I liked this education, and still do, so the “I don’t know what I want to major in” problem was solved by early August and it’s not training home people’s task to be involved in a 20-year-old’s choice of college programmes, let alone that training home staff are required for this.

The situation, however, is more complicated. In March, 2006 I found myself confronted with questions about my situation that I had been facing for years - ie. is something so fundamentally wrong with me that it impacts my daily living abilities to a greater extent than what my parents, teachers and NFB members have always said? - and that I had been pushing away for equally many years because my parents, teachers and the NFB had always intrinsically defeated these beliefs. The way I thought of it then, was that experience would teach me the answer to this question, cause if I experienced the duties of independent living and studying to be too demanding on me, then the answer would obviously be “yes”, and if I could handle these duties, the answer would be “No”. This philosophy of finding “realism” through experience has stood out ever since then till sometime in late October, even though it existed in different forms, from merely surviving the now open-ended situation in March till June to routinely defying every attempt at clarifying my situation from June till early October to experimental scheduling in the month of October. And I think it has value, especially as in experimental scheduling, but there are real drawbacks. These are related to the fact that I cannot schedule experimentally sometimes - ie. my schedule has been astonishingly similar ever since late October. Does that mean I’ve reached “realism”? In one way, I might think so, but in another there still remains the feeling that this can’t be all. It’s coloured - I could complete a whole college education part-time without having to work in the field (with some programmes), there might be possibilities for exactly the same assistance I get now, etc. -, but, firstly, it’s not coloured enough, in that there are quite many people who would let me down if this were the definite situation, and secondly, even now I and the staff are at a loss for an appropriate approach to my situation. The first can be settled, in that, if it’s really the way my situation is, abandoning me over it can be said to be unreasonable, but the second thing so far can’t, and I’m really skeptical I will ever find an answer to this, even though I’ve not yet given up.

There are real reasons why I’m not sure I can study at all, hence making it impossible to even think about choosing a major. There are times when I feel completely unmotivated about college/university majors cause I feel completely incapable of ever studying at college. Sure I am in college now, but I can’t say my situation is quite what it should be. And besides, what’s the use in studying if I will never be working anyway - for other reasons than the 75% unemployment rate among the blind.

Then there’s the part about the contradictio in terminis being involved in studying. Like, it feels completely illogical to be in college and do perfectly fine there (when I do), while at home I completely freak out. This may be irrational thinking, but I just can’t get myself out of it.

There’s a more specific factor in this whole thing, and that is related to the simple fact that whatever I’m going to major in, it always has some social component, while that’s exactly my weakness. My current programme is the most extreme example of this - it’s the most socially-related college programme in Deventer. Other very socially-involved majors, like pedagogical studies, are still on my list of interesting programmes based on decision-making (ie. what interests me), but are on the “unlikely” portion of it cause of “realism”, ie. my inability to function in these fields. However, every programme that is on the list, does have a strong “people” component, whether it’s linguistics or communication studies (Jutta sort of got me to keeping it on my interesting list cause the flyer is better than the info round was) or sociology or journalism or even languages that I’ve abandoned cause of the strong literary component. Is the real problem that I want to study something I’m really unfit for? Then why on Earth did I let my situation go so far out-of-hand that people have come to doubt my sanity? Did I really “let it go out-of-hand” or is my current situation “real(istic)”? Does it matter? Cause, really, if I am too socially awkward even for journalism or linguistics - the least socially-involved programmes on my list -, wouldn’t I have been this way forever? Cause “letting it go out-of-hand” implies some deliberateness or at least a lack of determination to behaviour that wouldn’t have gotten people to doubt my sanity, and, hence, would imply that, if I really determine to be a social person cause I want to be a student in some socially-involved programme, I would be one. Of course, I’ve walked the Earth and questioned the nature of my behaviour problems long enough to know this is not the case. I’ve also experienced the year 2006 well enough to know that confusion and a subsequent lack of determination does play a part in the situation. To what extent each contributes - or what my situation is really like, if you disconnect it from aggressive behaviour apparently unrelated to it (according to Renee’s theory) -, is an important factor that simple decision-making cannot solve. In one way,it can, in the context Renee described yesterday: I pick a major (she requested I get an appointment with the student counsellor, but I haven’t been able to find contact info yet) and then we figure out whether it’s realistic. Well, maybe I’m scared to be left with the conclusion that what I want is, indeed, unrealistic and I failed to look into other possibilities.

I have six flyers in my pocket now and will be requesting a seventh one (journalism) tomorrow. Here is the list:

• Pedagogical studies (university): unlikely on two grounds, the first being the fact that I’m too socially unskilled / behaviourally disturbed for that and the second being a lack of interest in the employment field (other than to radically change it…). The big plus is a huge interest in the field of study.
• Social work and services (college): very unlikely on the social skills ground. In my pocket cause of interest in programme and employment field (to radically change it, partly), though the programme at Saxion is really unclear.
• Sociology (university): on the list cause of moderate interest in the programme. Figured out a new advantage today, which is the fact that there are only about 35-40 new students each year, so no big classes except for the classes you’ll have together with communication studies and cultural anthropology. Not sure about social skills component. Dislike huge research portion.
• Social legal services (college): picked that one up today at Saxion. Like the programme and employment perspective. Unlikely cause of actual illogicality (it falls within the college law school and no-one expects me to go into that), social skills thingy (though I’m not sure about that) and not liking each aspect of the programme.
• Linguistics (university): moderately interesting programme (more interesting than sociology, I think). No image of employment field but doesn’t really matter with university programmes. No idea about social skills component; communication can be a big problem for me but that’s one of the things I’m most uncertain about as to made up cause of confusion vs. real skills deficit.
• Communication studies (university): don’t know why it’s still on the list cause I really don’t seem to be liking it. Falls within social sciences and I therefore assume a bigger social involvement than I expect at first glance.
• Journalism (college): on the list cause of love of writing and interest in society. Heard that there’s a very strict selection procedure so that’s a big drawback. Journalists work with people all the time, but they are not usually the most socially skilled persons in daily life, so about the least problems on that front (of the programmes on the list).

Yes, maybe in my case it *is* a lot easier if you’re the technical type like my father, have your high school education in the natural sciences and doubt between airplane construction and physics and eventually end up in system management like my father did. What I’m going to major in if I’m too socially awkward for journalism or linguistics, I don’t know, but let’s keep Michelle Dawson in mind, who is autistic (so obviously socially awkward) and works as a journalist.

This week has been rather confusing on the personal front. Of course, I’ve been confused for months and that’s what I keep highlighting when people react only to my angry outbursts - that have been rather frequent and serious this week -, but this whole thing can’t be separated into so many different pieces: my confusion triggers stress which triggers frustration which I’ve always had trouble handling, hence the increase in behavioural problems (that in themselves have existed for years), but it also works the other way round. Last Tuesday, I freaked out quite majorly over something I can’t even remember and, as I got back to Marjan, initially to apologize, but unfortunately it never works this way, I got into a crying tantrum cause I’m too intelligent for the “severely behaviourally distrubed, mildy intellectually impaired” (SGLVG, in Dutch) label (not a diagnosis, but a label used to indicate services) and there is no such label, and there are no services, for folks with these behavioural problems who aren’t intellectually disabled, especially if they have no official diagnosis of mental illness (though maybe the mentally retarded require additional diagnosis to be labelled SGLVG, too). You can’t talk about getting images of my situation sorted out without realizing that anger tantrums and aggressive behaviour are part of that same situation, and it goes the other way round, too: if you make a statement about my (current) behavioural problems, this statement will have implications for my situation in general.

This is something pretty relevant in people’s, and my own, attempts at getting answers to the question what my situation is like and how they/I can live/work with it. The most annoying is how people keep separating these two things - my unclear situation in general and their/my lack of answers to my behaviour -, when they decide they have no knowledge of one thing and yet at the same time presume knowledge of the other. This is complicated, of course, by the fact that my behavioural problems hurt others and, hence, need to stop no matter what. No-one cares for their own sake whether I stop being confused about my situation, but it’s different for my behaviour problems, cause those hurt the staff quite a bit. Still, in my opinion, that doesn’t mean people have the right to presume knowledge about my behaviour problems that they can’t observe while admitting to not having knowledge about my general situation that they can’t observe. The classic example, that I also encountered this afternoon in an argument/discussion with Renee, is the “you are acting this way for attention” statement. It was an exaggerated and inaccurate interpretation of correct observations about what happens before, during and after my aggressive behaviour and some statements I made. The thing is, I sure want attention. Who doesn’t? And, yes, I do act inappropriately. And, yes, I am pretty eager to assume a relationship between these two in this form: when I am stressed or tired or emotional or whatever, I usually have problems communicating (”locked up inside” stuff, etc.), especially when I’m trying my best not to act out (but well, acting out is in a way inappropriate communication, too). People can’t deal with these difficulties and usually get to ignore them based on the fact that they don’t have ages to wait for me to get my point across or to understand theirs. Renee kept saying, this afternoon, that they don’t want perfection, but it feels this way: in any case, it’s better communication than what I can do at that moment. The whole thing changes quite radically when I’m throwing an anger tantrum: Renee says folks will ignore this behaviour, but, honestly, I wish they did. I’m pretty sure it could’ve saved them a lot of time and energy. Like, yesterday afternoon I had this communicating problem over some little situation and was kind of frustrated. I acted out, which was mostly ignored by the staff, until I walked to the sink with my soup to throw it away (we were having lunch) cause I was too frustrated to eat much of it anyway. Then one folk said I’d have to pay for that, which I think is unreasonable, cause it doesn’t matter whether I eat a little bit or all of it - no-one can eat it if I’ve already eaten from it, so it will be thrown away anyway. *That* was quite exactly what caused me to verbally abuse that staff member. I’m not saying that makes it acceptable - my behaviour is unacceptable no matter what -, but, if we’re going to believe attention-seeking theories anyway, I would’ve achieved exactly what I wanted. I then went to my apartment and stayed there for about an hour, acting out there (not intended to be heard by others, but people can hear every whisper in neighbouring apartments), until Renee came to my place. I was still sort of frustrated (less than I’d been before, but still) so still acting curtly. Then, later, Marianne came to my place and I got in an argument, insulting her further. The thing is, she did listen to what I screamed - what do you mean ignore? And this afternoon, Renee suddenly showed interest in how I was not doing alright, while she’d not shown any concern for my situation in weeks (and I assumed she didn’t want to cause she can’t settle the issue anyway). Well, yes, apparently acting out works, so am I ever glad for the staff and for me that it’s not all or even mostly about attention. Anger is about anger and frustration is about frustration, got it? And there are many factors contributing to my poorly handling frustration/anger: the fact that I’ve always handled this poorly, my general confusion about my situation, the study info thingy and related stress, pretty bad insomnia and subsequent tiredness once again, an possibly even the fact that I’m having my period this week. Does that make my behaviour acceptable? No way! But does it mean I’m deliberately acting this way, especially for one particular purpose? Not at all.

Maybe, still, people have come to assume attention-seeking theories or anything else deliberate, cause they at least used to believe there was a time when I was not quite behaviourally disturbed in this sense. I never believe this: I’ve always had abnormally poor frustration tolerance, for example, it’s only gotten worse over the past so many months. This realization also impacts why I feel you can’t make statements about the why of my behaviour without making statements about my situation in general: my behaviour is a quite major part of my situation and, while this is more so recently than it was before, it’s always been a significant part (well, so far I’ve been unable to figure out whether it’s significant, but for me, it is). This being the case, behaviour has a strange dual role in my questions about my situation: it is part of my situation - and quite contradictory to other parts of my situation, like my intelligence, hence creating confusion -, yet at the same time, my confusion about my situation is a factor in its increase. So, if you say that you don’t understand my situation, how can you pretend to understand my behaviour? In fact, understanding my behaviour is quite a major factor in understanding my situation in general, so big thanks to the one figuring out a workable concept for my behaviour.

So, the elections are over and the votes have almost been counted. The SP got 26 seats!!! I’m not sure how they’re going to do this, as the members number 25-29 were different for each region, but at least, we now have 26 people in the Lower House. Isn’t this great?

Unfortunately, Labour lost ten seats (it now got 32) and GroenLinks lost one (now having seven seats). The former is probably due to the SP, the latter, I’m not sure. Balkenende will still be the largest with 41 seats, but we have more seats than the VVD (who have 22). Geert Wilders, an extremely right-wing party, got nine seats. The Christian Union got six and Democrats ‘66 got three and the rest seems roughly the same. Oh, no, cause the Animal Party got two seats - couldn’t they have given them to GroenLinks?

Now what government do we get? Rouvoet was already eager to claim a “christian social” government, ie. CDA-Labour-CU, but journalists are saying that the forming of a government will be extremely difficult. I’m not sure when I want new elections, cause, even though I want a left-wing government, I realize that we’re not going to retain our 26 seats.