My attempt to help NT's grasp our inner lives better.

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justMax
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Joined: 23 Nov 2009
Age: 43
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23 Feb 2010, 5:05 am

From another message board I frequent (palladiumbooks.org), I think it was one of the Aspies on there that gave me the link here actually, after I mentioned suspecting myself of being one.

Anyways, to the post, which was partially a rant about autismspeaks.org, and assumes a largely NT set of readers:

I am not broken, I do not need or want a cure, I am autistic, but I'm lucky enough to be on the higher functioning end of the spectrum, however that carries with it a duty to use that gift (of basic communication abilities) to help those who are unable to explain their thoughts and feelings as readily.

I think I may be somewhat able to help NT's (neurotypical, most of you reading this are most likely within the range of NT brain structure/development) grasp what we go through a bit better.


Your sense of self, your awareness, it is located inside your head just like everyone else's.

You are able to readily empathize, exercise theory of mind, and perform a wide range of social communication methods, to various degrees of course. Not everyone is a social wizard, but you possess the toolbox nonetheless.

I would describe your awareness as residing in a house in your mind, lots of windows, the doors are easily opened, and you're able to project yourself outside to a common neighborhood area, or even into someone elses house if their door is open.

My door is locked shut, but I found out I can climb out a window, though people react badly if I try it at their house, and in general my theory of mind is based on raw calculation power, rote memory, and a logical/thinking self-based projection onto another person.

It doesn't allow me to transmit subtle verbal or physical cues like body language, and just running the "program" is tiring.

I do much better just chatting with people outside my window while remaining inside.

This young man: http://www.youtube.com/watch?v=rc5E6SBFgYs is trapped inside his house.

The windows are shut tight, the blinds are drawn, the doors are locked, and all he can do is peek out through the blinds. He is unable to communicate through them easily, and when he gets frustrated he pounds on the walls (self-injury, I used to bang my forehead on the wall/floor, I still punch my thighs sometimes when I get extremely agitated) hoping to be understood.

If no one knows he is in there, it is easier for him to avoid the windows unless he notices a shadow right outside them (you see when he stops pacing the net and turns to walk towards his mom), he doesn't know fully that we are able to come and go freely from our houses, he has never been outside.

He does have a nice comfortable little place though, the TV is huge (we are usually visual thinkers), lots of reminders of things which fascinate and interest him, and a quiet place to rest and think.


It made me cry when she said she doesn't think he is reasoning in there, that he is simply moving towards her because he thinks she might have food or something, it literally hurt my heart to think that he has never had anyone who knew how to tap on his window and show him how to pull the blinds back a bit.

While I can't easily place myself inside your mental house, I can barely see them, I can see his, and I know how to talk through the walls pretty well.


Infants start out in a similar state, and rapidly develop the ability to open their doors and windows, but they start out unaware of this ability, and in a similar sort of trapped state.

Even if they had the door open, they're not sure how to communicate verbally and such, I can see the little mind in there desperate to interact though, and have always had an intuitive bond with babies. They see that I'm not reacting to them in the normal adult "goo-goo-gaa-gaa" fashion, but that I'm tapping on the windows, showing them how to tap back.

Unfortunately, babies grow up, and by the time they're 5 or 6, they've surpassed my social abilities. Usually people stop reacting as if they're not fully aware around the second year or so, and once you begin treating them like little people they blossom rapidly into normal little kids.

It was always an odd assumption for me though, the way people act as if babies can't think or reason, just because they can't communicate.

Learning that this is applied to locked in autistics is so sad it hurts, and I'm typically unable to properly apply empathy.


Anyways, the source of this rambling post was to correct a misconception, autismspeaks.org does not speak for autistics, it speaks for those around them, while acting as if autism is both curable, and vile.


I wonder, if I made a site called NeuroTypicalitySpeaks, and went around talking about how evil and wrong it is to socialize freely, how people should be forced to stim (hand flapping, pacing, picking skin), to adopt a specialized interest, and stop using their accurate models of other peoples minds to their advantage... how would that go over?

If I began a crusade to cure you of your urge to hang out with your friends, and force you to sit around alone and flap your hands, because you're broken, and you have to be fixed before we're required to throw away your entire generation...

How would that be received?

There are several groups which actually have autistic people involved in them, but none have quite the public face of autismspeaks, but they all share a common theme: nothing about us, without us. I am autistic, and autismspeaks does not speak for me.


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