What It Feels Like: an attempt to explain my world to NTs

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kotshka
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06 Oct 2012, 7:38 am

OK, I've done a rewrite. Just small changes to the beginning, but more and more the further through you go, and I've added quite a bit to the end. Thanks to Jinks for pointing out the importance of going through decades like this without even knowing - I've added that to the end as well. Again, I'd appreciate any feedback. I think I'm going to start a new blog (hopefully this weekend) aimed at sharing and documenting my experiences, and this can be the first entry.

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Imagine that you wake up to find your mind has been transplanted into an artificial brain in an experimental robot body. It’s a work of pure genius, really. It looks absolutely real, you can see and hear and feel and taste and smell everything, and you can control everything the same way you would your normal body without even thinking about it. It’s a perfect copy, really – except for just one or two kinks they’re still working out of the system.

First you have to test the controls. You tell the robot body to stand up straight, and you can feel that it do so, but when you stand in front of a mirror, you see that it doesn’t look the same way it feels. Your shoulders are rolled forward just a little too much, and you’re hunched down a bit. At first you can’t reconcile what you see in the mirror with how your body feels. Finally you start moving around randomly until the body in the mirror is standing up straight, like it should. But it doesn’t feel right at all. It feels like you’re leaning backwards, and you have to really stretch the artificial muscles to keep the shoulders back. It takes a surprising amount of concentration to keep it up.

Then you try walking, and it’s another disaster. The body in the mirror isn’t moving the way you intend at all. Yet another physical movement to train. And the more things you try, the more you realize – the controls are just not set right. Your only option if you don’t want to appear physically normal is to practice each and every bodily movement in front of a mirror for hours each day. It’s just not feasible, so for now you’ll have to accept that your body language and posture are going to look a bit weird.

As you’re experimenting with this, you discover another programming error: the sensitivity on the sensory input mechanisms is set way too high. The programmers were unable to simulate the unconscious filtering mechanism of a normal brain. That’s the thing that picks out what sensory input is important and sends that to your brain, discarding the rest, and the reason why you can see a field instead of a million blades of grass, a wooden table instead of a mess of brown squiggles, and a car coming at you instead of a splotch of red that slowly changes size. These robot eyes take 100% of the details of the images they receive and pipe them directly into your digital brain without any filtering whatsoever, and the buffer for processing this information is way too small. As you look into that mirror trying to make your body move properly, you keep getting distracted by your own unexpected movements in the mirror, flashes of color from a window where cars are passing by, shadows moving on the floor, and the flickering lights on the computer terminals around you. You really have to focus to keep your attention on the mirror while you try to learn how to move.

To make matters worse, the volume and light meters are not even set properly. You’re getting all the sounds in the surrounding area at the same volume, and it’s impossible to distinguish the conversation in the next room from the voice of the technician standing next to you trying to ask you questions. As your buffer fills up, the lights in the room seem to get brighter, and the sound seems to get louder. You just can’t process it all.

After giving you a few minutes to settle in to your new body, the technician asks you to step away from the mirror for a moment. He asks you to stand up straight, look him in the eye, and answer a few simple “common sense” questions to test your logic circuits. The mere suggestion that you should accomplish all of these things at once in this clumsy excuse for a body is overwhelming and frustrating. You’re having a hard time even making out the words he’s saying over the sound of computers beeping and humming and cars passing outside. You start to tell him that you *are* standing up straight, but then remember that your body doesn’t move properly and have to shift your concentration to try to fix it by remembering how you were standing before when the body in the mirror was standing up straight, all the while trying (and failing) to pay attention to what that tech is saying. He, in turn, gets impatient and starts tapping you on the shoulder to keep your attention, adding to the sensory overload. Once you think you have your body standing correctly, you try to look him in the eye, but you can’t stop your eyes from jumping to each change in any single strand of his hair, every blemish on his face, and the movement of his lips when he talks. It’s much easier to focus on the words he’s saying if you watch his mouth moving, but he keeps insisting that you look him in the eye so he can be sure you are paying attention. At long last, you can’t take it anymore. You squeeze your eyes shut, clamp your hands over your ears, and try to empty that processing buffer enough that you can at least manage a conversation.

But it’s no use. The environment is too stimulating, the controls are too imprecise, and the robot project is a failure. It would take years for you to even be able to manage all of this well enough to look someone in the eye and speak. It looks like they’ll scrap the project, junk the robot, and move on to other things.

Now imagine that you’re stuck in that robot body for the rest of your life. And while you train and train and train, it never really gets any easier. You get more skilled at maintaining the correct body language and even get faster at processing information and picking out which bits are important. There are even advantages to your situation: you notice details that others never would, have certain new talents in specific areas like math, language, and even art, and you come to appreciate a certain beauty to the world through your new perception which others can never see. But over time, you have to accept that the image you have of yourself in your mind’s eye, the person you always were before, is no longer the way others will see you. However charismatic and attractive you were in your former life, and no matter that you are still the same person on the inside, your outward appearance will now always be strange, clumsy, and awkward, and no one will ever again see you the way you see yourself. And there are always times when your processing buffer gets overloaded and you have a temporary meltdown.

Now let’s back up and make one very important change to this little hypothetical situation: let’s say you don’t know that you’ve been transferred into this artificial brain. Let’s say you’ve been this way all your life, but no one ever told you. All your life you saw yourself the same way you see yourself now, sitting at your computer reading this, but outside, the rest of the world saw the clumsy robot. All your life you assumed that everyone experienced the world in the same way as you, and not a word of explanation was ever offered as to why you were unable to do simple things that others seemed to find easy. No matter how much you insisted to those around you that something was not right, you were always told that it was fine, you were just imagining it or making it up for attention, and assumed that all your inappropriate behavior was intentional. It wasn’t their fault either, really – this is experimental technology and no one had ever heard of artificial robot brains. Let’s say you go through the first 20 or 30 years of your life this way before someone finally tells you what’s been going on all this time, that it’s not your fault, and you can start to learn to project a more “normal” outward appearance. But all the while you must live with the knowledge that it is never really going to change. You are who you are, and your brain will always function the way it does.

That is life with asperger syndrome. We are not robots, of course. We’re just as human as anyone else, but our brains just function differently. Since asperger syndrome is a relatively newly recognized condition, most adults with it (including myself) were never diagnosed when we were young and had to find out for ourselves many years later. (I was 24 when I learned of my condition, and I’ve spoken to others who were not diagnosed until much later.) Late diagnosis is especially common among females like myself, since we present differently than males and the symptoms are very often missed.

There are both advantages and disadvantages to this condition, but living in a world mostly full of neurotypical people can be very difficult, and understanding is often nearly impossible to find. While many people know the symptoms and appearance of autism spectrum disorders, few have ever really learned what it actually feels like. I hope this little experiment will provide at least a little bit of understanding.



musicforanna
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06 Oct 2012, 5:30 pm

When my sensory issues overload, I feel like I'm that cheap radio in the country side, where radio stations don't come in clear and I get untold amounts of interference from other stations from other hole-in-the-wall towns. It seems like the lights get brighter, my brain goes up or down in framerate to where I can even see them flickering (think, doing something that has lots of motion, like playing hula hoop under a flood light late at night for a similar effect), it's almost like I'm getting a migraine, I can hear the lights humming, and it seems like everything around me auditory-wise enters into what seems like a smeared doppler effect soundwise. All of the sounds blend into each other to where I can't pick one out and listen to it (like I'm being swarmed in the various noises), and it seems like the sound is typical of those scenes in movies where they slow down the sound to where it gets distorted and echoey, typical of those scenes where they turn the visuals into black and white to emphasize something horrible happening that the person, and usually they are recalling the incident in their mind or their dreams or it's something that happens in a split second and they slow it down to show people what happened (i.e. a man has something that falls into the street and goes *bellows smeared decending vocal* NOOOOOOOOOOO as it gets ran over by a car). And by doppler effect, think about an ambulance, how as it approaches, the rhythm of the siren gets chopped closer together, and the pitch of it goes up, and then it speeds past you and the pitch and rhythm go down. Even as a person moves a foot or two closer or farther from me can I detect differences in that regard. It's almost like you're working in a sound/music program on a computer where it shows the squiggles of the sound waves, and there's so much going on (lots of tracks) and it gets merged together in some kind of compressive way, that it cancels stuff out so the squiggles are basically lacking basic information that other people are able to get in different less compressed tracks.



Esther
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06 Oct 2012, 7:14 pm

The clothes designer you linked to on your tumblr, the word NANAY from my original country could mean either mother or grandmother. Does it mean something else in Czech?

I love the crayon that swallowed the balloon, but I don't quite get some of the rules from Book 1. Green border is good and red is bad?



StarTrekker
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07 Oct 2012, 1:52 am

Wow, this is a perfect way of explaining it, it makes so much sense!


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kotshka
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07 Oct 2012, 3:06 am

Esther: The woman who runs that site goes by Nanay and she's not Czech, she's from Azerbaijan. So I don't know what it means. :) The rules comics are red = bad, green = good, yes. One of them has been replaced, actually, and I should update the tumblr as well. The rule to say "STOP" when someone does something you don't like had too much emphasis on the girl being violent rather than the boy stopping her, so I've changed it to the girl just sticking out her tongue. The rule is to say stop rather than reacting with violence or name-calling. If you click the pictures, each has a caption that explains the rule.

Anyway I've sent this essay to a couple of NT friends for feedback and I'm planning to start my new blog today. I'm just deciding which host to use. I like Tumblr but it's not good for getting feedback. Blogger works well but it's owned by Google and I'm wary of letting them control too much of my information, since I've heard several stories (even from close friends) about them randomly deleting accounts without giving a reason or listening to appeals. Can anyone suggest another site that would suit my purposes?



DerStadtschutz
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07 Oct 2012, 3:44 am

musicforanna wrote:
When my sensory issues overload, I feel like I'm that cheap radio in the country side, where radio stations don't come in clear and I get untold amounts of interference from other stations from other hole-in-the-wall towns. It seems like the lights get brighter, my brain goes up or down in framerate to where I can even see them flickering (think, doing something that has lots of motion, like playing hula hoop under a flood light late at night for a similar effect), it's almost like I'm getting a migraine, I can hear the lights humming, and it seems like everything around me auditory-wise enters into what seems like a smeared doppler effect soundwise. All of the sounds blend into each other to where I can't pick one out and listen to it (like I'm being swarmed in the various noises), and it seems like the sound is typical of those scenes in movies where they slow down the sound to where it gets distorted and echoey, typical of those scenes where they turn the visuals into black and white to emphasize something horrible happening that the person, and usually they are recalling the incident in their mind or their dreams or it's something that happens in a split second and they slow it down to show people what happened (i.e. a man has something that falls into the street and goes *bellows smeared decending vocal* NOOOOOOOOOOO as it gets ran over by a car). And by doppler effect, think about an ambulance, how as it approaches, the rhythm of the siren gets chopped closer together, and the pitch of it goes up, and then it speeds past you and the pitch and rhythm go down. Even as a person moves a foot or two closer or farther from me can I detect differences in that regard. It's almost like you're working in a sound/music program on a computer where it shows the squiggles of the sound waves, and there's so much going on (lots of tracks) and it gets merged together in some kind of compressive way, that it cancels stuff out so the squiggles are basically lacking basic information that other people are able to get in different less compressed tracks.


Even though it's not exactly what I hear when dealing with auditory sensory overload, I think a much easier to understand way to describe that sort of thing would be to reference the scene in saving private ryan where tom hanks loses his helmet and his hearing, and all he hears is this wind tunnel-like noise, and everything else is completely drowned out. I never hear that actual sound, but that's basically what it's like. There are all these stupid machines and whatnot around me, or other conversations, and i can't focus on one, so I can't focus on any.

My girlfriend gets annoyed with me often(as do lots of people) because I have to ask them to repeat things often, and I simply can't help it. Especially when we're trying to watch a movie together, and she starts talking. I have to either turn the volume down to where it's barely audible at all, or I have to pause the movie. Either way, I can't follow her conversation with me and the movie at the same time. It just doesn't work, and I wish people would understand that. I get accused of not paying attention, or people ask me if I'm deaf or whatever, or I also get a lot of "I'm not repeating myself, I know you heard me." No I didn't, a**hole; I wouldn't be asking you to repeat it if I got it the first time... Do NTs like to ask each other to repeat things to annoy one another or something?

To the OP, thank you for sharing this. I can relate to a great deal of it. Reading it made me a little sad, but at the same time it made me feel a little better that I'm not alone. I hope every aspie finds his/her place in the world. I'm still looking for mine.