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

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kotshka
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04 Oct 2012, 2:36 pm

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 of all, you have to test the controls. You tell the robot body to stand up straight, and you can feel that it’s straight, but when you stand in front of a mirror, you see that it’s not. 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 what you feel. Finally you start moving your body 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’s going to take a while to get used to that, and you might never manage it – it just takes so much of your 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 completely insane 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 forgot to take into account that a normal brain has a filtering mechanism that picks out what sensory input is important and sends that to your brain, discarding the rest. That’s 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 a swish of hair, a reflection from a window where cars are passing by, the smell of someone’s stale coffee, and the sound of footsteps in the next room.

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 questions the technician is asking you. 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.

Meanwhile, a technician is standing there with a clipboard trying to test your abilities. 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 break your eye contact and concentration to look back in that mirror and fix it, all the while trying (and failing) to pay attention to what that tech is saying. He, in turn, gets impatient and starts poking you with his pen to keep your attention, adding to the sensory overload. 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 buffer enough that you can at least manage a conversation.

But it’s no use. The environment is too stimulating, 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.

And that’s a damn shame, because you had so many interesting things to say.

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. Oh, and when you try to explain to others that you're only behaving weird because of this crazy robot experiment, they roll their eyes and call you a paranoid hypochondriac.

Background:

I’ve educated myself pretty well in the areas of social skills and body language. I’ve learned all the signals I can for when to enter a conversation, when to leave, when to stop talking, when the subject has been going on for too long. I’ve struggled to improve my posture and control my facial expressions, to be able to express the emotion I’m intending to those on the outside. One of the things I’ve had to accept, and am still coming to terms with, however, is that while I can always improve bit by bit, I will never be able to show the world who I really am inside.

I’ve tried time and time again to explain to others that I’m really not so strange. I’m not crazy or stupid or immature even that different. For the many years before I learned about my asperger syndrome, I could never understand why people didn’t like me. After all, I’m a very likeable person. I’m intelligent, funny, talented, kind-hearted, generous, honest, and caring. I always do my best to make other people happy and do the right thing. What’s not to like?

Then I finally learned that I lack “social skills” and unwittingly make other people uncomfortable. It was me, not them, that was the problem. The world is not full of as*holes: I’m just giving off all the wrong signals. My body and face do not look the way they seem to in my mind’s eye, and no matter how well I think I’ve learned the rules, I can never speak and act in an appropriate enough way for people to take me seriously. And no matter how well I train myself, I’ll never be able to process all the sensory input fast enough to keep up with the world. Even to those who know me well, I will always be, first and foremost, that strange girl who always acts inappropriately. And there will always be days when I have to hide in the closet until the flood of overstimulation slows to a manageable level.

I am not what you see. In fact, I really like who I am. I bet you would, too. But you can’t see who I am. You can only see the image I project, and I can never show you what’s inside. It’s not your fault any more than it is mine. But it’s such an intense feeling of loneliness, knowing that there is not now, nor will there ever be, any possible way for me to show people who I really am, how I really think, what I really see, and what I really have to offer. All I’ve ever really wanted is to make other people happy, and to feel loved. And I have so very many interesting things to share, if only I could figure out how.



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04 Oct 2012, 3:19 pm

A very interesting way of describing it. Thank you for posting it.

In my case, I would also add that I spent my life having no clue that I was a robot prototype and so it took me about 30 years to figure out what the heck was going on and eventually understand that other people didn't experience the world the way I do.

I completely understand what you mean about being unable to show anyone who you are or what you have to give. I feel the exact same way. Just about all of the friendships I have had in my adult life have been internet relationships, because when communicating using text I am finally on a level playing field with everyone else, and people tend to recognise warmth and intelligence in me and like to be around me. When I am face-to-face with people the exact opposite happens. They think I am peculiar or stupid and either walk all over me or can't get away fast enough.

I know it's probably not much in the way of condolence, but you're not alone.



iggy64
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04 Oct 2012, 3:34 pm

That is so perfect. It's sure to help people understand!


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philippepetit
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04 Oct 2012, 4:18 pm

meaningful understanding of another's internal experience is impossible regardless tho. so w/e



urbanpixie
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04 Oct 2012, 4:50 pm

kotshka wrote:
I am not what you see. In fact, I really like who I am. I bet you would, too. But you can’t see who I am. You can only see the image I project, and I can never show you what’s inside. It’s not your fault any more than it is mine. But it’s such an intense feeling of loneliness, knowing that there is not now, nor will there ever be, any possible way for me to show people who I really am, how I really think, what I really see, and what I really have to offer. All I’ve ever really wanted is to make other people happy, and to feel loved. And I have so very many interesting things to share, if only I could figure out how.


Kotshka,

Your post broke my heart. It was amazingly well-written and honest, and I can feel your loneliness and how strongly you want people to see you for your heart and who you really are. From what you wrote, I can see that you are intelligent and have a beautiful soul, even though I don't know you personally.

I know you want the people in your real life to see you for who you really are- would you ever consider showing some people who are close to you what you wrote here?

Lastly, I think it's wonderful that you want to "make people happy," but I don't think that anyone can specifically set out to make another person happy. I would say that happiness as an emotion is just something organic that you happen to feel in reaction to a person, thing, experience, or mindset. I know this is very cliche, but the best way to 'make others happy' is to focus on your own happiness- and then people can see that happiness and feel the same way around you.



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04 Oct 2012, 4:52 pm

I like to compare being an Aspie to Battlestar Galactica (a Sci-Fi-TV series, in case you don't know). :D It's like feeling different all your life and one day you find out you're a Cylon and everything is making sense. If anyone gets what I'm talking about.



emimeni
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04 Oct 2012, 6:00 pm

You think of posting someplace where NTs tend to congregate? A blog, maybe?


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jlym
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04 Oct 2012, 10:45 pm

Sanctus wrote:
I like to compare being an Aspie to Battlestar Galactica (a Sci-Fi-TV series, in case you don't know). :D It's like feeling different all your life and one day you find out you're a Cylon and everything is making sense. If anyone gets what I'm talking about.


I have nothing to add to your comment, just wanted to say that I agree! And I love it <3 So say we all!


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Last edited by jlym on 05 Oct 2012, 10:10 pm, edited 1 time in total.

btbnnyr
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04 Oct 2012, 10:58 pm

I think that you are too focused on holding yourself to some impossibly high standard of appearing NT in order to be socially accepted by NTs. I don't think that this is going to work for an autistic person, as you are finding too. I think that it is bester for you to drop some of the things that you do to appear NT and let some of yourself leak out, even if this causes some people to reject you. What you are doing now doesn't sound healthy to me. It sounds unmanageable, unsustainable, miserable on a daily basis.



kotshka
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05 Oct 2012, 12:06 am

Thanks for the support, guys. I am thinking of sharing this with some non-aspie groups of people, maybe via my tumblr, but I'm concerned about how people I'm close to (especially my family) will react. Many people in my life don't know I have AS and I'm not sure they will accept it if I tell them in this way. Also, I was obviously feeling very down when I wrote it, and I don't want people to suddenly feel like they have to take care of me or be careful around me. The worst thing about my boss knowing about it is that when I do anything unusual she asks if I need anything or if she can help. Mostly I'd prefer that it just not be focused on all the time.

In any case, I didn't write this just to vent about how tough my life is, blah blah blah. Actually I do pretty well, have a good job, my own apartment, several close friends, etc. I've just been hormonal for the past week and feeling frustrated that it will never be possible for anyone to see me the way I see myself. Hence the "background" section of the post (which will be removed if I publish the essay).

The point of this little essay is an attempt to explain how it feels to be autistic. Most NTs who think they know something about autism just know the symptoms. They know how we act, and maybe some slight explanation about why, like "sensory overload." But I think very few of them have ever really learned what that really means, or how it really feels. They think "so you learn to make eye contact and stand up straight, and that problem is solved." From conversations with my NT friends I've come to realize that they truly don't understand that it's neverending and doesn't get easier, and not only are we trying to remember to make eye contact and stand up straight, we're trying to filter an incredible barrage of information *and* carry on a conversation. At any given moment, we're trying to do consciously what they all do automatically, and it's a huge drain on our systems. And I do it so well that no one guesses what's going on, and when I finally have a meltdown none of them can comprehend what has happened. They think of it as some sort of attack, like something suddenly just *snapped* rather than it being a gradual buildup of what I have to deal with every second of my life.

I plan to write more things like this, and also produce some visual and digital art showing other aspects. It's always been important to me to help people understand each other (not just myself), and I think that I have a lot of ways that can help improve communication and understanding in this matter. I'm a little tired of seeing videos on youtube entitled "THIS IS AUTISM" filled with pictures of their autistic kids smiling. I'm sure they mean well, but most of them really have no idea. That's not their fault. This site is great for people both on and off the spectrum to help each other, vent, and understand each other better. I think I can go beyond that and bring this world to more than just a closed group who happened to all find the same web site.



emimeni
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05 Oct 2012, 5:12 pm

Have you tried trying what btbnnyr suggested? Letting "your autism" leak through, and then after that, maybe coming out?


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Mirror21
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05 Oct 2012, 5:50 pm

Wow OP. This Made me cry. Because that is totally me and that is why I feel my gf will leave me any day now and I love her sooo much and it seems like I will never be able to love her like she needs or that I will never be able to show her, at least.

It is lonely and crazy. I feel like an alien.



opal
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05 Oct 2012, 9:34 pm

Totally agree that NTs need to see it. It describes it so well.



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05 Oct 2012, 11:23 pm

Thank you for this.

I bookmarked your blog. :)



Kaelynn
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06 Oct 2012, 12:11 am

I loved this!! Very well writen!



kotshka
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06 Oct 2012, 1:37 am

Thanks again, guys!

btbnnyr and emimeni, yes, I "leak out" quite a lot, in fact. :) As a preschool teacher I'm with kids all day and they think I'm just fantastic without any social pretending. The other teachers are great as well, and I have a few close friends, all of whom are odd in their own ways and enjoy my little quirks. The source of the frustration isn't really from the need to pretend - it's just that whether I pretend or not, the external self that people see will never be representative of my internal self. If I make no effort to "act" and just do what feels natural and someone videotapes me then shows me later, I'm horrified. THAT is NOT me - but nevertheless it is what people will see. It's no one's fault, and there doesn't seem to be any solution. The best I can do is to try to explain and educate people and hope they get it at least partially. Those who read my writing and view and appreciate my art have a better idea, but the image I've always had in my head of the way I look, sound, and behave, can never be an external reality.

Esther: Thanks! I actually haven't written in that blog for a long time. I hope I will update it soon but I'm not sure. Right now I'm more active in creating various forms of art and putting them on my tumblr: http://airavj.tumblr.com - I've changed this to my "web site" link in my profile. Anyone who is interested in my stuff is welcome to visit me there, and I really appreciate the support!