Self-defense, not ego trips.

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The following is a quote (used with permission) from a chat with Laura Tisoncik tonight (all the the following are her words, not mine, but they express something I’ve been trying to express for awhile):

I just wish people would stop treating the autistic community as some kind of ego trip and start treating it as self-defense. We don’t have the luxury of creating heroes and rockstars and ward bosses… that’s for people whose lives are not on the line.

At the same time I understand why it happens — for most autistics the autistic community is the first place they feel “important” and for a lot of them it goes to their head. Not to mention that the only role models many of them have had (of authority) are abusers. It’s understandable, but inexcusable.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

10 responses »

  1. Not sure if this is a tangent or not. I’ve been re-drawn to looking at autism-related info online because of the death of Marcus Fiesel this summer in my town. He was 3. I will not post here how he died in case it might trigger someone. But it’s not fair, it’s not right. It’s an abuse of power.

    Personally, I am somewhat trying to reconcile my interest/belief in “the law of attraction” with, well – the problem of evil.

  2. Our verbal skills have been going irritatingly online and off all day, but:

    …yeah. That pretty much gets at it, I think. That’s also a big part of what bothers me about the aspiefication thing you talked about earlier, the fact that the people who do it seem to actually be in denial of the fact that it *could* ever become a life-and-death issue for them. Oh, no, we’re just a little odd and don’t have any use for social formalities, that’s all– this is just a matter of getting people to appreciate our wonderful qualities and not try to cure us; we could never, ever end up in a situation where our lives and freedom were actually put on the line.

    Which is downright dangerous even for a completely typical person to assume in a society which has been so deeply infiltrated by the psychiatric state. Hell, our most recent “close call” with police had nothing to do with acting autistic in public, it was because we were crying in public and someone decided that meant we were about to go off and kill ourselves, which was the last thing on our minds.

    And admittedly, this is opening a can of worms, but I’ve also sometimes thought that people approach skepticism of quack autism “cures” (of which, as I think you or someone else pointed out in another post, biomed is just the latest in a long line) with the wrong attitude. As it seems that sometimes the focus is less on the tragedy of those harmed and killed by these “cures,” and how the people who promote them manipulate both families and research to their own ends, and the focus turns into self-righteous snarking at the cranks and quacks and more generally at everyone who is seen as being too fuzzyheaded in their thinking– which, from my pov, makes it again about people’s egos rather than about the lives which are really on the line, and those who have already been harmed. Especially since I’ve seen some discussions turn into people patting each other on the back for their clever insults against the quacks. That seems like kind of a misplaced priority, at best.

  3. I wasn’t told I was autistic until I was 21 and
    thereby missed out a lot on stuff that could have helped me
    ( like an education that didn’t ignore my autism.) I think
    kids should be told but then again my parents were too scared
    to disclose to others. I was diagnosed with severe infantile
    autism as a baby but was told when older that I had been
    “cured” and had “residual” autism. Now they claim I cannot
    work when work is what I need because I need socialization more than anything.

  4. [tersemode] Wellput. Serious, self-defense important. Lives slip. What to do? Self-defense->Nicky Walker Aiki.:) Egoless! Leggo my ego? How? Self-deprecate:no. Self-promote: also no. Assist, answer, assert. Yes.

  5. The problem is with the categories.

    To begin with Autism was conceived of as a child psychosis, adults could not have it, that is what schizophrenia was for.

    The childhood label dogged autism for a long time since nobody had bothered in the early days to go looking for it in adults.

    Anyway this is how the category of residual autism came about, an artefact of the way DSiii was written I believe.

    Now residual autism does not exist as a category with subsequent revisions of the DSM.

    The problem is that people will believe that if you give a new name to something that it some how changes what was there to begin with.

    retrospectively the childhood psychosis thing was bunk, but it’s legacy lives on in many ways, just as we are all inheritors of Kraepelins paradigms. Without Kraepelins conceptions of mental illness we would not have had Bleulers “autism” without Bleulers “autism” we would not have had Kanners and Aspergers “autism” either.

    Without the 19th century passion for categorising and dividing we would not have the differential between mental illnesses, personality disorders and retardation.

    The most absurd thing about the current DSMIV is that it categorises dyslexia (or reading disorder, dyslexia cannot officially exist remember if it not catalogued in DSM) is that this developmental difference in ones capacity to decode text is considered to be pyschiatric.

  6. I’ve tried to point out before that in order to understand “autism” (the clinical label not people) you really need to look at the history not only of the term but of the whole concepts of mental illness and mental defectiveness. People have been conditioned to want catagories to put people into and those catagories are supposed to neatly explain everything. That is why there is so much confusion when people have multiple labels because it is defying the “logic” of the catagory. But if people insist on being defiant (and I use that term because there have been those who refuse to educate themselves) than they are going to believe that autism is “new” or an epidemic or any number of things that manipulative groups want to tell them. It is like trying to understand the world while refusing to learn about history.

  7. In my opinion, the whole DSM thing needs to be reworked. For example, rather than having the categories ADHD, reading disability, writing disability, math disability, dyspraxia and whatever else, they should study a large group of kids with school problems and start delineating syndromes based on cognitive profile, similar to NLD.

  8. I think the category PDD-NOS should be completely removed from the DSM as it only creates more questions than it answers. It took years for me to be diagnosed with Asperger’s syndrome and that only came about when the DSM definition of Asperger’s was updated to include some further traits.

    Before then, I was continually told I didn’t show all the classic signs and therefore didn’t have autism and so was not able to access assistance within my workplace.

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