April 3, 2009

World Autism Awareness Day

...Was yesterday, sorry for missing it but I'd like to post about it anyway.

Visit the World Autism Awareness Day site here and if you don't know what autism is, well head on over to the wikipedia article for only the briefest of understandings you can get.

I've been holding off on writing anything about this because I honestly don't and probably never will understand autism, and it's kind of personal. My boyfriend has Asperger Syndrome, which is on the autism spectrum. I've always felt weird talking about it with him because I don't want to be singling him out, or making him feel different. But I guess the fact is, our brains work differently, and I've always been a mixture of fascinated by how he thinks and upset that we can't understand each other in the way that I think of understanding.

From wikipedia:
"...people with AS therefore show significant difficulties in social interaction and restricted, stereotyped patterns of behavior and interests. AS differs from other ASDs by its relative preservation of linguistic and cognitive development. Although not mentioned in standard diagnostic criteria, physical clumsiness and atypical use of language are frequently reported."

"The lack of demonstrated empathy is possibly the most dysfunctional aspect of Asperger syndrome. Individuals with AS experience difficulties in basic elements of social interaction, which may include a failure to develop friendships or to seek shared enjoyments or achievements with others (for example, showing others objects of interest), a lack of social or emotional reciprocity, and impaired nonverbal behaviours in areas such as eye contact, facial expression, posture, and gesture"

Have a read of the wikipedia article because I'm going to have a hard time explaining it properly without feeling like I'm listing all the things I see my boyfriend doing because really, I have no idea what he does or thinks. So I'd most likely be totally wrong. Here's a part from the article which might give you an understanding of what it's like to talk to someone with AS:

"Speech may convey a sense of incoherence; the conversational style often includes monologues about topics that bore the listener, fails to provide context for comments, or fails to suppress internal thoughts. Individuals with AS may fail to monitor whether the listener is interested or engaged in the conversation. The speaker's conclusion or point may never be made, and attempts by the listener to elaborate on the speech's content or logic, or to shift to related topics, are often unsuccessful"

My boyfriend gets obsessed with things, and it'll usually get pretty intense, and go in phases, like for a few months all he did was buy Alien figurines and we'd watch the Alien movies, then it was all Terminator. He's really into film, and I'll often be on the receiving end of a monologue about camera lenses or setting up a scene. He collects DVD's obsessively and could probably start a video store with his collection. Wiki says: "Although these special interests may change from time to time, they typically become more unusual and narrowly focused, and often dominate social interaction so much that the entire family may become immersed."

I think the hardest part is that he's not very good at comforting me when I am upset, or realising that it's his fault that I'm upset. I get so annoyed sometimes because I'm not sure whether he really can't understand why I'm upset, or if he's just being an asshole. Sometimes I think maybe there's something wrong with me, why can't I feel nothing, why do I have to feel the way I do? Sometimes I want to just sit and talk with him for hours, but he is completely, entirely focused on something else and I can't even get into his peripheral view. Sometimes when we do talk, it feels like he completely ignores every thing I say, or if I try to argue a point, he tells me he doesn't want to talk about something if I'm going to get angry. We have extremely different viewpoints to begin with, and most of the time I feel very alone, and kind of worthless. He considers himself superior to a lot of people.

I don't really know where I was planning to go with this, except to say that it is hard. I've joined forums for people who have partners with AS, because I thought maybe they could tell me how they cope, and give me more understanding. What I found was actually extremely depressing, hundreds of unhappy wives planning to leave their relationships, mostly older women who have no way of caring for themselves, so they're stuck while they plan an "escape". There are a few good communities of people whose relationships are still together and strong, but there's really no rules, no list of things you can do to be happy, so I stopped visiting the sites. And I just stopped thinking about it. He now lives back at his old house, which is just around the corner from me, and we still see each other every day, and this has all reminded me how grateful I am that I know him. He's an awesome person. And that's all I have to say about that.

Here is a video I found a few months ago by an autistic woman (tried to embed but the linky didn't work). The first few minutes she is shaking doorknobs, moaning, rattling things, etc and the second half of the video is her explaining (through a voice synth) how she is interacting with her environment, and what she is thinking. It's pretty fascinating. Anyway...happy Friday!

2 comments:

  1. I have friends with Aspergers and I know how hard it can be to relate to them. Or for them to relate to me! But as well as bringing a lot of puzzling characteristics, it brings a lot of cool ones (like artistic ability, logic genius, the ability to get to the bare facts of things), so it kind of has it's good with it's bad.

    But sometimes it just gets really frustrating, I know.

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  2. Hey, finally get to comment. Thanks for yours, I didn't mean to make the whole post seem so depressing, and you're completely right, he does have awesome characteristics to be envied, such as the ability to be so goddamn rational all the time.
    I think I wanted to take a little longer writing this post, there's a lot more things I wanted to say about it but I guess I don't quite know how. Anyway, thanks for reading :)

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