as small as a world and as large as alone

3:50am June 24, 2014

arctic-hands:

youneedacat:

alliecat-person:

andromedalogic:

“is using stim toys if you’re not autistic appropriative?”

several things on the internet went VERY WRONG SOMEWHERE for this sentence to be able to exist

Someone asked this?!!! 

Also at one point an extremely prominent autistic blogger (I don’t know why I’m protecting her, but I am) went on kind of a rant that went like… sort of like this…

“…all these aspies who start typing and say it’s their ‘real voice’ when they don’t respect what this feels like for people who would give anything to be able to speak”

“people who go to toy stores and buy ‘stim toys’ that they then use in public in such and such a way”

“people who stim in public even though they never used to stim”

and just a list that made me furious because those are real things real people need to do, and it was like she was half mocking it and half disparaging it and certainly making anyone who did these things feel worse about themselves, and possibly too self-conscious to do the things they need or want to do, it made me really angry and upset.  I don’t remember the whole list, or even if what I said was on the list entirely, I just know this was the general shape of it and it upset me so much.

Because I know a woman who was in her fifties and had been on autopilot her entire life to the point of getting married without even quite realizing it, finally became able to show her true self, who had much more trouble funcitoning than her autopilot self, and needed to do a lot of those things, and she’s far from alone, and nobody should ridicule that or put it down.

And I hate the “if you can talk then you shouldn’t type because it’s disrespectful to people who would gladly give their legs if it meant they could speak”, because… the world shouldn’t work like that.

That can happen?  Someone can just be going through the automatic motions to the point where they don’t realize they got married at some point?  Yeesh, I can’t imagine what it would be like to “wake up” from that.

In extreme cases, yes.  Fortunately, she had an amazing husband who stuck by her as she was relearning everything.  What happened with the autopilot was that every single inch of her thinking was going into passing for normal, doing what normal people would do, and so literally none of it was connected with her own desires or anything like that.  And then finally it all came crashing down in her fifties or sixties, and she was left to pick up the pieces.  Things like that happen in extreme cases when people are forced to function beyond their actual capacity to function.

I’ve experienced things similar to that, when I was younger, except with me it was autopilot communication more than any other aspect of autopilot.  And I think it permanently ruined speech for me, I can make the actual speech sounds some of the time, but I can’t connect them to my thoughts except like… so rarely it doesn’t even count.  Because my brain learned that speech is an autopilot thing, not a communication thing.  Luckily, I was able to get typing to stop being autopilot and start being communication, or I’d still be stuck behind this wall of language that meant between 0% and 30% of what I was actually thinking, at best.   And that was a living hell, much worse than simply not being able to communicate at all.  I’ve experienced both.  If you can’t communicate at all, it sucks.  If you can seem to communicate, but what you’re saying has nothing to do with what you’re thinking (but sounds accurate enough people believe it), that feels almost like being possessed, by your own brain.  Which is why I now have to tell people “If you hear me typing, and talking, then always go for what’s typed over what’s spoken because the spoken language is more likely to be BS.”  But most of the time I can’t speak these days anyway, and when I can, I try to suppress it around people so as not to confuse them.

But doing things like that on an extreme version of autopilot – whether it’s speaking, making decisions, or other things – is a common thing when someone is trying to do more than their brain will actually tolerate.  So the autopilot takes over to the point where you don’t have enough brain left to even understand what you’re doing.  And in an extreme instance… imagine waking up 40 years later and realizing you’ve had this whole long life and have no real idea beyond fuzzy memories of what happened, none of which were your own decisions.  Or few of which.  Maybe you got a few chances here and there to be yourself, but not many.  And then you have to relearn how to be yourself.  The woman in question seriously amazes me the degree to which she pulled a life together so late in life and made it her own, finally, not her autopilot’s.  With the help of a husband who was unwaveringly supportive even though she could barely remember marrying him. 

These are the stories I wish that were being told when they tell “success stories” about young autistic people.  Because so many people end up in a robotic autopilot mode for some or all of their functioning, and it does so much devastating damage, but everyone thinks it’s wonderful because it allows them to be “successful”.  And instead it’s really sad and disturbing for the people who have to live through it.

I told a reporter about people like this.  She said that she’d spoken to an autism ‘expert’ who told her that anyone capable of figuring out what other people wanted to see and giving it to them (i.e. passing however robotically) couldn’t really be autistic.  I told her it didn’t take much to become an autism expert these days, and she laughed and said I was right.  But that kind of prejudice is what we’re up against when we try to tell these stories.

Anyway, these sorts of stories tend to end in severe, long-term burnout.  Autopilot itself is like a severe, long-term shutdown in the ability to monitor oneself and control one’s own actions connected to one’s own motivations.  But it always has devastating consequences.

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