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    [Original date of posting unknown, due to the mess weblog.nl made when they moved from Typepad to Wordpress]
     

    People, for some reason, often don't realise I'm disabled (specifically, autistic). I think it's glaringly bloody obvious, but what the fuck do I know, eh? So sometimes they talk to me about how they're (studying to be) a psychologist, and/or they work/volunteer at [random institution or center] with 'those people'. Or they're teaching a class and I'm in it and they'll talk about people with brain disorders and the stuff that can go different, like problems with language. This is pretty logical, but they'll be less than fully respectful while talking about them (�us� from my perspctive).

    Confession:

    I like to let them talk just enough, let them really work their way in. And then I'll tell them I'm autistic; my brain does that stuff too; I receive help at home; why no I don't live independently; I have to take courses and visit centers sometimes; people like you have volunteered for me too; I participate in research like that as the object sometimes.
    And I *really love* watching them squirm and get flustered and make excuses of all the faily, disablist types, as they realise we're sitting right here and are listening to them.
    I could have clued them in before they really got started, but I don't. I find this more fun. I make sure to smile very obviously (have to work at that, my face is one of those blank ones) as I tell them. I make sure to grin as they putter about trying to talk it 'right' again.

    Lees meer...
    [Originally posted on 22 July 2009, when this blog was over at weblog.nl]
     
    (ok, that's probably not true, I bet there are even more infrequent and irregular posters out there, but it's such a nice title!)

    Ok, so what's happened over the past.... *goes to check* .... jeez, 6 months! (In no particular order)

    I made two guest posts on Change.org, autism.change.org to be precise: http://autism.change.org/blog/view/high_hopes_for_the_low_lands and http://autism.change.org/blog/view/high_hopes_for_the_low_lands_part_ii

    I (and a lot of other people too!) was interviewed by Elesia Ashkenazy, over at her blog Aspitude, which you should also read beyond this link because it's good: http://aspitude.blogspot.com/2009/03/world-autism-interviews-norah-vd-stel.html

    I went on holiday in Cornwall with my partner, parents and brothers and it was awesome. May post pictures later.

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    [Originally posted on 28 Oct. 2008, when the blog was over at weblog.nl]
     
    I attended this year's NVA Autisme Congres last Saturday. I was pretty satisfied with everything. There were several speakers, and I did not find a single one of them in any way offensive. The stands on the information market were generally nice too, but they're pretty much the same each year. With one exception. This year, there was one stand that had two tables full of all kinds of pills, and on the wall they had plastered the slogan 'Defeat Autism Now!". Stark contrast to the other tables full off generally good books, nice toys, weighted vests, helpful tools for teaching, info about alternative methods of communication, information about housing projects, information about how to get help in the household, etc.

    The NVA is, all in all, a pretty good autism organisation, in comparison. They talk about assistance, accommodation, stories about hardship too, but hardly ever in a way that makes me cringe. They're about opportunities, pointing people in the right direction when they need to find suitable housing and education and such. They also often promote groups completely by and for autistics. In the before last Engagement (NVA's magazine), they had a guest column by one of the Autism Hub bloggers. Not to say there aren't points for improvement (like the fact that within the organisation, there are, to my knowledge, no actual autistics, and though there are autistic speakers at the Congres, they are not represented in appropriate proportion. It's still mostly other people speaking about autistics. And they focus too much on children, though this year they had a section on adults and admitted on having been too child oriented in the past, with services and circumstances for adults being largely unexplored and not in very good state in the country), and so I let them know what I think in the yearly survey. They do seem to pay attention.

    So I wasn't expecting that DAN! stand. We kept an eye on it (my mom and me), and were glad to see hardly anyone even cast more than a passing glance at it, but I still feel very uneasy by it even being present.

    On to better stuff: the two autistic speakers they had this time were good. One was a man in his middle years, with a very successful job at an oil company and a university degree, who got a late diagnosis of Asperger and was finally able to work through problems in his marriage and work out accommodations at work. The other was a young man (19), with a diagnosis of MCDD, who had been institutionalised and much more. Two very different 'samples' of the population if you will.

    The young man has become a cabaretier (like a stand-up comedian but better :P), and he performed some of his act for us. He has a lot of potential; I thought he was already better than some professional cabaretiers whose shows I've seen.

    The first speaker was a scientist who addressed myths about autism. He stressed the need to accept the evidence and move on, that there is no good and much harm in staying with old theories that lead us nowhere. (And I mean the first speaker of the whole convention, not the first autistic speaker or anything)

    The second speaker addressed 'behaviours' autistic people might express, including harmful ones, and pointed out that 'attention seeking' is hardly ever what is going on. She said that, actually, she could not recall a single case where that was what was going on. She pointed out that behaviour is communication, and that the cause should be found and addressed.

    Though I didn't hear anything that was news to me (I try to follow latest news from all over the world and the science etc.), I was really pleased that I went, and I hope it was educational to other people who attended (it's mostly parents and professionals that attend, my mom and me are a minority together with a few more).

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    [Originally posted on 30 Sept. 2008, when the blogwas over at weblog.nl]
     
    I've realised, after taking a look at my own blog, that it might seem as though I only write about 'negative' topics, things that go wrong or that I have trouble with.

    This is not actually the case. Some of these things might bother me somewhat some of the time, but mostly they don't. I'm used to them. I write about them not because they bother me, but because I'm just very interested in and fascinated by them. Not just my own issues either, but others' too. I restrict myself to writing about myself, though, would feel rude to write about other people and it would be inaccurate anyway, since I can only observe from the outside.

    Diseases and disorders (or however you like to coin these things, I have to call them something so for now this is it) have always been one of my big 'perseverations.' (Neither that term nor any other sounds good to me, but ye gods, the Dutch word 'fiep' is the single worst of them, never have I heard a more derogatory and dismissive and looking-down-on term).

    I used to read medical magazines (that they publish those official article thingies in written by doctors and scientists) from a young age, and any other books on the subject. If they had pictures, all the better, since I couldn't always understand medical lingo.

    Long before I recognised myself in the descriptions and lists of symptoms, I had been reading about autism (some of those books were pretty bad, too, but I didn't realise that then). Finding out I was autistic myself was actually quite... exciting to me. For a lot of people this may seem strange, but I was quite glad. So, apart from being autistic, autism is now one of my big interests, grown out of the still standing interest mentioned above, to be a special interest all on its own. And that is mostly why I write about it and stuff I think might be related.

    A lot of stuff might seem horrible or negative to outsiders, but to me it's mostly neutral, sometimes not so nice, sometimes very nice, and almost always fascinating. Outsiders will not always be able to tell which of the three/four I'm feeling about a particular subject. For instance, not having a feeling of 'this is me' when you look in a mirror and your reflection seeming like a stranger to yourself might seem pretty bad, but to me this is a neutral-to-positive-madly-fascinating thing. So, far from a bad thing.

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    [Originally posted on 13 Sept. 2008, when my blog was over at weblog.nl]
     
    I was brushing my hair this morning, standing in front of the mirror. Something struck me again, and I figured, why not write this down in my blog? If anything, I'll be able to read back my own thoughts later.

    My face is not mine. By that I mean, when I look in the mirror and see my face, that is not me. I do not see 'me'. Every time, still, I go: "Oh yeah, this is what my face looks like." It's like looking at the face of a close friend or relative: I know it well, I recognise it, I'm used to looking at it, but it isn't 'me', it doesn't give me a feeling of 'this is myself.' This goes for the rest of my body too, really. And I've always had this. It actually used to be worse when I was younger. It got a bit better after I dyed my hair a different colour.

    It's not that I have problems with face recognition (including my own), quite the opposite. I also have a superb memory for faces. I'll forget your name in the blink of an eye though, once we don't have regular contact. I can recognise which one is me in photo's without problem, but it's just that I know that the one that looks like that is me. The way that body+face looks in that photo looks very odd and sometimes jarring when it hits how I felt like I was in that photo, in my memory. It doesn't look like what I felt. It looks like I'm watching this other person whose face of course I know well is there, only that person that looks like that is me. I know it's me, but it feels a bit like someone I know very well is standing in the spot where 'me' should be. Only what should that 'me' look like?

    I don't really have an image of me at all. Maybe two hands in front of me and the frame of my glasses at the height of my eyes. Mostly nothing. When I think of me there is no physical thing there. I wish I could play life the way I play computer games: in third person. Other people have physical presence in my mind, but I don't. But then when I see my body, I know that I do. Of course I always 'know'. But in my mind I don't, in my deepest sense of my presence (not talking about sense of identity/personality, by the way, I dare say that is very well defined indeed here). So, there I have to look at this body that rationally I know is mine and I recognise it, but... it's just not me.

    Now, I'm not explaining it as well as I wish. I'm coming close to describing it, but it's like I just can't really hit the bullseye. So I hope that it's somewhat understandable or imaginable for anyone else but me that happens to read it.

    I have always had a poor sense of body. It is hard to tell what exactly is wrong or hurting when I am in pain or ill, and it was even harder when I was little. It's hard to tell what and where sensations are in general. I used to feel like I was in some sort of cell, or maybe locked into some hunk of flesh, and looking out of two little windows. I can still feel like that, but I've worked very hard at 'being' in my body more, and there has been some improvement there, though it's still not very good. My coordination and gross motor skills are also quite bad (fine motor skills not so bad, though slower than others). I wonder if that is at all related.

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    [Originally posted on 9 Sep. 2008, when my blog was still at weblog.nl]
     
    So, recently I've had to face the fact that I wasn't able to keep up doing my job in the same way as before.

    Recognised the signs of major breakdown/shutdown just in time (as opposed to the usual 'way too late'), and had my BF call up my job coach. I dragged myself through a rough couple of weeks (with help); stuff has been arranged, and now I'm working from home for the remainder of my contract. (Note: the job was fun and so were the co-workers, not to make anyone think something negative happened. Will try to explain all about the job situation in a follow-up post).

    What this made me think of, was the way I used to (and still) get so frustrated/angry when someone asked me a question about my day or some such, or asked me to explain about a situation I was in. I'd slide right into meltdown, unless I could get myself to just walk away, or half-yell just the word "no", or something like 'don't ask me questions.'

    I have finally figured out what happens. Here it is:

    It's one of two things: either the question is too vague/unspecific or whatever for me to answer (too many things they might mean, or can't figure out what they mean, like "How was your day" or "How are you"), or people ask me to put something into words that I am unable to put into words, but they expect me to be able to. The realisation that they might think I'm deliberately not answering for some other reason just makes it worse, adds anguish to the mix. That they think I'm unwilling to answer instead of unable is not far-fetched: I am verbal and usually 'good with language'. Equally frustrating is the thought that they might think I'm not answering because I don't really know what's going on myself - I do know, I just can't frame words around it.

    Being verbal, even being good with language in general (picking up new languages, my own language), does not mean you don't have problems with both language expression and language comprehension (both in speech and in writing, by the way). Many of these blog posts may therefore look messy and might be hard to understand, while I was capable of getting A's for essays and fictional pieces when I was still in university. This is because here, I try to explain things I wouldn't be able to say to someone face to face at all, but still have problems in writing too, even if it's easier.

    So maybe now I can come up with two stock phrases/scripts for when someone asks me a question that's unanswerable for either of the above reasons and prevent the frustration, since that's as unpleasant for me as it is for the recipient (really, it is).

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