Autism From The Inside

Due to the time of year, I don’t have a new article. However, this piece from a year ago (October 2011) is still relevant and I think you may enjoy it. By the way, it happens to have nothing to do with bisexuality.

Over the course of the last week, I have been confronted with my autism. Yes, I’m saying autism now rather than the more specific Aspergers, for a couple of reasons — one, because Aspergers is probably going to be deprecated in the upcoming version of the DSM; two, because let’s face it, that’s what it is. Check this link for basic information.

I haven’t become more autistic (because that’s not possible, remember, it’s not a disease), but I have become more aware of it this week. It had been building, but when we saw a video in my behaviorism class about autism, I had to speak up and out myself, because the video equated mental retardation with autism, and while they are both technically developmental disabilities, and they can and do certainly exist in the same person, they are separate. You can be one and not the other! The other thing about the video was it featured one person who was very high-functioning who referred to himself as “cured” and said everyone with autism should begiven intensive behavioral treatment so they can be “cured” too.

I cannot be cured, because I am not sick. I am different. I can learn coping mechanisms, I can function in society, but there are things I can never do, because my brain is wired in a way that is not identical to the neurotypical.

Let me try to describe it. Let me try to tell you how I see the world.

The world is people. To me, Sarte is absolutely correct when he says “Hell is other people.” Look at the face of the next person you see and ask yourself, “How does this person feel?” If you then asked them, their answer is probably pretty close to what you percieved.

When I look at faces, what I see are masks. If you have ever seen the original Planet of the Apes, think about the ape makeup. It allowed a very limited range. Your face is like that. I can see obvious things, I know what a smile means. The people I’m closest too, I have a much better idea of how they are feeling, but it’s still not perfect, even after years of careful examination and cross-checking. But those judgements I’ve learned to make do not generalize. If someone I can read better is sitting next to a person I’ve only known for a few minutes/weeks/months/years, and they are feeling the same way, and have the same facial expression, I cannot interpret both faces to have the same meanings. I can say that person A is happy to see me, because their expression is the same as times I’ve verified they are happy to see me, but I can only guess about person B. Sometimes I guess right. Being in my fifth decade in this strange world, I probably guess reasonably well, but not only am I sometimes wrong, even when I am right I do not know it unless it’s verified.

What has happened to me this week is not a worsening of “symptoms” but an increased awareness of my limitations. For the first time in my life, it actually feels like a disability. And one of the things that makes me feel very vulnerable is that you ARE able to read me. I feel like a broadcast telepath, like everyone around me can read my mind. Imagine for a moment the existential horror of living with a neon sign on your forehead that unambiguously broadcasts your feelings at all times. Now imagine further that you’re the only one who has this.

Let me tell you how I see the world. In string theory, there are 8 dimensions that are inaccessable. We live in forward-back, left-right, up-down. This is normal life. It feels to me like everyone else has another dimension they can move in, let’s call it zhur-jhur. I cannot percieve zhur-jhur, but I am aware it exists, and I am aware that there is a wide gap in that direction between you and I. I can flail around in hopes of crossing the gap, but cannot even get halfway. In order for us to relate, you have to move across it and into my space. This is not a demand I am making, but a simple statement of reality — I am living on top of a pole, like Simon Stylites, and it is simply not possible for me to get down.

Let me tell you how I see the world. I have often had a reputation for being rude. I’m not. Rudeness is, fundamentally, a disregard for the feelings of others. Example case: imagine a person who has been blind since birth, but has learned to echolocate. They have no identifying gear, no sunglasses at night or white cane or helper animal. Now put them into a room filled with people. If they physically step on someone’s toes, and that person is of another race, is the blind person a racist? But on those occasions where I step on someone’s metaphorical toes, one of two things typically happens. Either they think I am a jerk, or I think (based on what I’ve been told by others in the past when it has happened) that I’m being a jerk.

I am sorry. I had no idea I was offending you. Or even worse, I had a glimmer that I might be offending you, but was so damned exhausted from an entire lifetime of walking on eggshells that I wasn’t able to stop when I guessed (guessed, didn’t know, merely guessed) that it might be happening again. I went home and cried about it, for two reasons — one out of empathy for your pain, and two out of frustration because I do not know that I offended you, I deduced that I did, I guessed that I did, but I still don’t know if I did.

Just because I cannot see your emotions doesn’t mean I think you don’t have them. I know you do. I know they are the same as mine. I just don’t know what you are actually feeling unless you tell me in an unambiguous manner at the time, and the next time you feel the same way, I probably still won’t be able to recognize it.

Another thing that’s happened this week has been an increase in my behaviors. There are things I do, physically, that help to calm me. Arm flapping is a big one for me, as is picking at my cuticles, stroking my beard, and clicking my fingernails. There’s a very common one that involves my fingertips, where I essentially try to pull the pads of my fingers forward so they extend past my fingernails. The feeling of the pads of my fingers being set back from the very tip of my fingers is intolerable. Rocking forward and back happens less often, but when my stress level reaches a point where I can’t handle it, I move my torso forward and back in short arcs. I find it difficult to look you in the eye for an extended period of time, it is uncomfortable. I cannot put my finger on exactly why, and it isn’t all the time, and there are few people, those closest to me, whose gaze I can meet without discomfort. I’m avoiding my discomfort, not your gaze. It’s not that I can’t handle you looking me in the eye, that’s fine, it’s looking back that is the problem. And, like the others, the higher my stress, the more it exhibits.

It seems that every day I hear someone talking about social skills, about people skills. About how they are more important than intellect or technical training, and every day I see it in action — politicians, CEOs, leaders, they gain success and respect and frequently livelihoods based on their ability to read and reflect emotions, their ability to make others comfortable around them. I’m learning how to do this on a limited basis — it’s the cornerstone of my chosen profession. There are few professions that don’t require this, as a point of fact. At least it’s an explicit requirement of mine, rather than being something that I discover after I’ve been trying to do it for a while and find my advancement stalled or my employment ended because “You’re abrasive, you don’t have people skills, your coworkers think you are weird.” When the world says “People skills are the most important thing” the world is saying to me, “There is no place for you or your talents. You can contribute nothing of value. You cannot succeed.” When the world says “Anyone can learn how to do this” is is like saying “Anyone can learn to speak fluent English without an accent.” Not if you don’t have a tongue, lips, and a larynx.

I am weird. By definition. But you know what? If you could see the world through my eyes, I think there’s a statistically significant chance you’d say “Wow. Everyone is weird. Why is my weirdness such a problem when others’ weirdness seems to be seen as an asset?”

There are things I cannot do. This is something I have been confronted with this week. Every person has things that they cannot do. In my case, they are things that are automatic to others. I am not making excuses or using it as an excuse to defend poor behavior on my part. I just want to let everyone know that there is an intrinsic level of effort to my daily life, that sometimes I get tired. Please forgive me if I have given offense or seemed insensitive. I am insensitive, but not because I choose to be so. There are people who do not feel physical pain. They have to spend every day of their lives self-monitoring to insure they do not injure themselves. They do injure themselves, because no one can maintain that level of vigilance every waking hour of every single day — and they cannot see the center of their backs, for example. I have injured others and myself emotionally, because not only can I not maintain the requisite level of vigilance, but there are things I just cannot see.

On the subject of exhaustion: I frequently interpret neutral or mildly negative facial expressions as anger. This is defensive, because if someone is angry with me, I must defend myself, and over the course of my life, I have found it is safer (if much less pleasant) to “see” anger that is not there than miss it when it is. So if I indicate that I think you are angry at me, don’t take it personally, please. Just tell me if you are or not. I usually don’t ask, because I have reason to believe that continually asking people if they are angry rapidly becomes a self-fulfilling prophecy. It’s not that I don’t trust you — it’s that if you aren’t mad, I don’t want to be the cause of your becoming angry, and if you are, I do not wish to make it worse. “What do you mean, am I angry? OF COURSE I’m angry, you idiot!” “I wasn’t mad before, but your obvious disregard and self-involvement are making me so.” I see these scenarios play out in my head a hundred times a day.

Yes, I am self-involved. That is part of what the word autistic means. On a fundamental level, I am the only person I know. This doesn’t mean I think others don’t exist, or that I assign you a low value. It means you are a mystery to me.

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About fliponymous

Bisexual activist, thinker, writer, husband, father, Licensed Professional Counselor.
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6 Responses to Autism From The Inside

  1. Jack Ori says:

    Thanks for your eloquent description of how you experience the world. I identified a lot with it in some ways.
    One thing I’ve learned is that other people being angry or offended doesn’t mean the end of the world or even the end of the relationship. If someone’s angry and he or she tells me so, we can discuss it and work it out. I may not understand intuitively why they are angry, but through communication the problem gets resolved. If someone walks away forever because they are angry, that’s really their loss. Anger doesn’t mean that anyone is bad or wrong, just that someone was hurt or scared and needed to defend themselves.

    I’m rambling because I’m tired but my point is: don’t fear others being angry. Use it as a learning experience.

    • fliponymous says:

      I was trained from an early age two fallacies about anger — 1 that I did not have the right to be angry myself, and 2 that anger in others was the worst thing that I could provoke, that it meant the end of relationships or worse. I’ve been working on getting over that, but I still find that the more tired I am, the more people I anger.

  2. Pingback: Autism From The Inside | Eponymous Fliponymous | My Autism Site | All About Autism

  3. Blown says:

    Great post, again. You don’t sound so weird to me 🙂

  4. judyt54 says:

    ahhh flipper. now I understand. what a beautiful post.

    this “Yes, I am self-involved. That is part of what the word autistic means. On a fundamental level, I am the only person I know. This doesn’t mean I think others don’t exist, or that I assign you a low value. It means you are a mystery to me.”

    This explains so much.
    It sounds almost as if you were describing yourself as out of phase with the world, just a bit. And just a bit can mount up to a great deal, can’t it. Our old friend Barry once explained that he could not handle sudden changes in conversation, direction, speech patterns. Move the furniture, and he was lost.

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