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:
- I’m really getting stuck in my current situation and am at a loss for strategies of changing it;
- 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:
- 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).
- 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.
- 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.
- 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.
- 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.
- 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.
- 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).