It was in 2004 that I learned I had Asperger's Syndrome. There was a feature in the Sunday Seattle Times. I had one of those moments of self-identification when you realize you are looking at yourself. I was 40 years old.
You can read about it for yourself: http://en.wikipedia.org/wiki/Asperger_syndrome.
I think it is interesting that Asperger's Syndrome is named after an Austrian doctor who documented child patients in 1944. I am constantly amazed by the sophistication of weapons and technology of the German empire as evidenced during WWI and especially WWII. Is there a connection?
I also think it is interesting that the condition did not receive a standardized diagnosis until the mid-1990's. What is it about this cluster of diagnosable conditions that resists easy recognition? I'll offer some thoughts on this later in the article.
There is some comfort in having a name for what you have, or who you are. There is some relief in knowing its not just me, that I'm not just a failure for no reason at all. It gives me part of the answer to the question I have asked myself over and over: why is everything so hard? It makes me sad for myself, to recall all the struggle and shame and humiliation and inexplicable under-performance that went undiagnosed from birth. It is my wish that early childhood diagnosis and intervention may help other children to grow up properly treated and accommodated.
It is sixth grade. The teachers do not understand why I walk around the edge of the playground by myself, looking at the trees, imaging they are pipes or alien machines.
It is junior high. The gym teacher takes attendance. I dread my name coming up because I know I will have to speak. Do I say Yes or Here? The gym teacher makes us run laps around the yard. I throw up on the locker room floor. Later, the gym teacher makes us do a routine on the balance beam. I fail the maneuvers and fall off. Later, the gym teacher calls me into his office and forces me to read a poem above not quitting.
It is high school. I am to play baseball with the class. I take my turn at bat and strike out. And again. I am not able to coordinate my swing with the ball. It is humiliating.
The most chilling thing to me about the Asperger's Syndrome traits is how spot-on they are.
It is the time between sixth and seventh grade during the summer. I realize there are other people. Until that time, there was only the house I lived in, my father (when he was present due to being a single-parent and a Doctor), and my brother and sister to the extent I needed to take care of them and mediate their fighting. There are people besides me. I just noticed them.
In Junior High I realized that I exist. Which is to say I realized that I existed as being perceived by some other alive things, although still largely irrelevant. I was teased and mocked on a regular basis. I did not know, until I was put down, that there was a properly masculine way to carry one's books. I was mocked for not knowing that there was a Super Bowl and who was playing.
I realize now that, by and large, other people do not exist for me. It is as if I am invisible, or that I think I am invisible to them and they cannot see me and harbor important thoughts about me. It is also that other people are like manikins to me: empty scarecrows that are placed in the seats of the class room. Aside from the mocking, there wouldn't have been much difference if I attended a school completely by myself. Because I did.
In class I am a good student. But I do not care at all what other people think. Sometimes I shake things up just to be different or a show-off. In class we are each asked to name an example of an exclamation. When it is my turn, I yell "AARRG!". When asked to create a sentence to be diagramed, I write: "Every globule of gaseous moisture has an inner luster of a metallic hue". [the first half isn't the original quote, but you get the idea].
I have no dates. I don't got to prom. I have no friends, except for two physics nerds like myself. I don't care. I go home and do my homework and read.
I have no emotional connection between my one brief girlfriend, between ninth and tenth grade. I am sitting in the dark with her discussing Love. I tell her something like, there is no Love, or I have no Love, or I how can I know what Love is. She is crying and I feel misunderstood.
Restricted and Repetitive interests and Behaviors
It is 1971, outside Boston MA. I am watching re-runs of Star Trek, Gilligan's Island and the Wild, Wild West. While doing so, I am playing with Lego's. But I never build anything. I simply categorize the shapes and colors. Or if I must build something, I build a cube or a pyramid. I am more interested in what the types of the pieces are, than using them to build anything.
Soon, I have seen and memorized every episode of Star Trek. My favorite episodes are The Doomsday Machine and the Galileo Seven. But there are many more. I know all the plots, the parts of the ship, and the guest stars. To this day I often surprise people with my ability to name the title or describe the alien in a given episode. There is an homage to the episode Arena in the move Bill & Ted's Bogus Journey.
It is 1976 and I am 13. It is seventh grade. At that time it was rare to have any kind of computer in a Junior High, much less a mini-computer (half way between a mainframe and a PC [which didn't exist yet]). Actually, the first year, the school has a kind of giant pre-calculator, called for its manufacturer, Olivetti. I am able to write a primitive program, getting the machine to count down in a loop. The next year, our math teacher accomplishes an amazing acquisition and we have a working Digital Equipment PDP-8/E with high speed paper tape reader, a real video terminal (only 12 lines) and 4 noisy teletypes [like a VW bug crossed with a typewriter]. I was the chief assistant. I could do a cold start of the computer by toggling in the bootstrap sequence. I could start the software called "Multi-User BASIC" by configuring the about of memory (16K? 32K? 12-bit words). I knew all of the BASIC code for all of the games we had, and liked to tinker with them.
In 1979 at the age of 15, on a lark, I type up a resume on a typewriter and send it in to Digital Equipment Corp. The resume and cover letter are forwarded to their internship program. I receive a summer job programming for the amount of $5/hour. I develop simple database applications for their quality department. I am surrounded in the internship by college students.
Speech and Language
Frequently I have difficulty answering the right question. The trigger which caused me to write this essay was one of my Doctors asking me if I liked to write. I answered that I sometimes write at work. And back a few years ago when I was manic, I had hypergraphia and filled a whole box of journals with thoughts and feelings. He went on anyway, and said that, since I was able to articulate my conditions so clearly, perhaps I should write them down. Oh, he was just asking if I would like to write something!
Often when I am asked a question, I over anticipate what the asker might have in mind. Do I need to defend myself? Am I in trouble? Does the person asking have the historical context? Does the person asking know that their question has multiple subtle interpretations? Or that there could be multiple answers depending on their time and resources involved? Did they ask the right question? Should I reword it for them? All these things run through my head and cause me to respond with To Much Information.
One of my favorite examples preoccupation with Jargon is a collection of slang from the computer culture of the 1970's. It was called The Hacker's Dictionary. http://www.dourish.com/goodies/jargon.html
I studied the Hacker's Dictionary. I liked reading the Hacker's Dictionary just for being a dictionary. In the era from 1978-85, I knew people who worked on the college mainframes or worked on them myself. At that time, hacker speech was a normal part of our vocabulary. I liked to slip hacker phrases into my everyday life. Such as "he's some RANDOM guy from the English department" or "I can't PARSE that" or "We're going to LOSE BIG here". I liked "bogus", "canonical", "feature", "hack" (high praise) and of course "kludge" (disrespected insult). You might say that hacker culture was a dialect and its own private world, and I loved to live it and use it, even in the outside world.
Motor and Sensory Perception
It was 2007, at the age of 44, when I realized that I hated water. Or that the feeling of water was painful to me. Or that the minutest difference in the temperature of water causes me extreme amplified feelings of the stimuli. I remember as a child being distrustful of the shower because of its fickle behavior, having a handle whose meaning changed depending on what room you were in. How you had to work to adjust it just so, and then having the temperature jolt high or low at a whim while it was running.
It is 1971 and I am to take swimming lessons in the local lake. I am told to walk out on the dock and jump in the water. I do this and the water feels like needles, extremely cold, like being plunged into ice water or being shocked. It is painful to make this transition quickly. And I do it again, day after day.
It is the 1990's and I am still married and raising my children. My children love the water. Some of my children find the water soothing, and quite enjoy taking a bath. I never take a bath: I don't lie how it feels and the disturbing signals. When we travel, I take the job of chaperoning the children in the pool. In each case, it takes my body five minutes to acclimate. My children have already jumped in without a moment's thought. Five minutes for the pool. Twenty minutes to get all the way into a hot tub.
I am very sensitive to noise. I cannot study or read if there is any music or distracting talking going on. I used to have to ask my roommate to wear headphones while playing his music while I was studying. Sometimes, I had to ask him still to turn down the volume because I could hear the sound in the headphones. At home, there is only a small range of volume at which the TV can be set at, or otherwise it disturbs me greatly. Even if I am not in the room, the ambient noise of something that is too loud bothers me to the point where I can't be in the house.
The processing of sound is also different for me. When we are driving and the traffic gets complex, I turned down the radio so I can think more. I cannot understand people when I am in a cocktail-party or noisy environment. I cannot easily discern the speech from the noise. It upsets me greatly if multiple people are having separate conversations near me.
One interesting thing I've noticed when watching movies is that I get more out of them if I watch them with the English subtitles (or closed-captioning hard of hearing-impaired) turned on. It seems as if the depth and appreciation of the movie increases by a third or more. I realize that with me, even though I hear spoken words, they don't fully sink in or register. I think sometimes that even though I can hear, I am actually deaf in terms of fully decoding human speech. I don't understand what people say and I miss a lot of the nuance. I wish that everyday interactions in the world were subtitled!
Late diagnosis
I asked a question at the start of the essay: why was it that Asperger's Syndrome was recognized as a standard diagnosis only in the mid-1990's, when presumably the condition has existed since the 1940's (and probably before)?
I don't know what the answer is, but I am offer this thought. When you look at the defining criteria for Asperger's Symptoms, they are categorical, that is symptoms for a symptom. Take "restrictive, repetitive pattern of interest and behavior". It doesn't say "pre-occupation with trains" or "memorizes names of stars". Normally, if you look at a diagnosis for depression, say, it might say "prolonged period of sadness". It doesn't say, "prolonged period of feeling something". That is, most diagnosis are for first-level experiences that are exact and specific. Asperger's symptoms can be about anything in a particular way, that makes them special.
You can read about it for yourself: http://en.wikipedia.org/wiki/Asperger_syndrome.
I think it is interesting that Asperger's Syndrome is named after an Austrian doctor who documented child patients in 1944. I am constantly amazed by the sophistication of weapons and technology of the German empire as evidenced during WWI and especially WWII. Is there a connection?
I also think it is interesting that the condition did not receive a standardized diagnosis until the mid-1990's. What is it about this cluster of diagnosable conditions that resists easy recognition? I'll offer some thoughts on this later in the article.
There is some comfort in having a name for what you have, or who you are. There is some relief in knowing its not just me, that I'm not just a failure for no reason at all. It gives me part of the answer to the question I have asked myself over and over: why is everything so hard? It makes me sad for myself, to recall all the struggle and shame and humiliation and inexplicable under-performance that went undiagnosed from birth. It is my wish that early childhood diagnosis and intervention may help other children to grow up properly treated and accommodated.
It is sixth grade. The teachers do not understand why I walk around the edge of the playground by myself, looking at the trees, imaging they are pipes or alien machines.
It is junior high. The gym teacher takes attendance. I dread my name coming up because I know I will have to speak. Do I say Yes or Here? The gym teacher makes us run laps around the yard. I throw up on the locker room floor. Later, the gym teacher makes us do a routine on the balance beam. I fail the maneuvers and fall off. Later, the gym teacher calls me into his office and forces me to read a poem above not quitting.
It is high school. I am to play baseball with the class. I take my turn at bat and strike out. And again. I am not able to coordinate my swing with the ball. It is humiliating.
The most chilling thing to me about the Asperger's Syndrome traits is how spot-on they are.
- Difficulties in social interaction and non-verbal communication
- restrictive, repetitive patterns of behavior and interest
- preservation of linguistic and cognitive development
- physical clumsiness
- atypical use of language
It is the time between sixth and seventh grade during the summer. I realize there are other people. Until that time, there was only the house I lived in, my father (when he was present due to being a single-parent and a Doctor), and my brother and sister to the extent I needed to take care of them and mediate their fighting. There are people besides me. I just noticed them.
In Junior High I realized that I exist. Which is to say I realized that I existed as being perceived by some other alive things, although still largely irrelevant. I was teased and mocked on a regular basis. I did not know, until I was put down, that there was a properly masculine way to carry one's books. I was mocked for not knowing that there was a Super Bowl and who was playing.
I realize now that, by and large, other people do not exist for me. It is as if I am invisible, or that I think I am invisible to them and they cannot see me and harbor important thoughts about me. It is also that other people are like manikins to me: empty scarecrows that are placed in the seats of the class room. Aside from the mocking, there wouldn't have been much difference if I attended a school completely by myself. Because I did.
In class I am a good student. But I do not care at all what other people think. Sometimes I shake things up just to be different or a show-off. In class we are each asked to name an example of an exclamation. When it is my turn, I yell "AARRG!". When asked to create a sentence to be diagramed, I write: "Every globule of gaseous moisture has an inner luster of a metallic hue". [the first half isn't the original quote, but you get the idea].
I have no dates. I don't got to prom. I have no friends, except for two physics nerds like myself. I don't care. I go home and do my homework and read.
I have no emotional connection between my one brief girlfriend, between ninth and tenth grade. I am sitting in the dark with her discussing Love. I tell her something like, there is no Love, or I have no Love, or I how can I know what Love is. She is crying and I feel misunderstood.
Restricted and Repetitive interests and Behaviors
It is 1971, outside Boston MA. I am watching re-runs of Star Trek, Gilligan's Island and the Wild, Wild West. While doing so, I am playing with Lego's. But I never build anything. I simply categorize the shapes and colors. Or if I must build something, I build a cube or a pyramid. I am more interested in what the types of the pieces are, than using them to build anything.
Soon, I have seen and memorized every episode of Star Trek. My favorite episodes are The Doomsday Machine and the Galileo Seven. But there are many more. I know all the plots, the parts of the ship, and the guest stars. To this day I often surprise people with my ability to name the title or describe the alien in a given episode. There is an homage to the episode Arena in the move Bill & Ted's Bogus Journey.
It is 1976 and I am 13. It is seventh grade. At that time it was rare to have any kind of computer in a Junior High, much less a mini-computer (half way between a mainframe and a PC [which didn't exist yet]). Actually, the first year, the school has a kind of giant pre-calculator, called for its manufacturer, Olivetti. I am able to write a primitive program, getting the machine to count down in a loop. The next year, our math teacher accomplishes an amazing acquisition and we have a working Digital Equipment PDP-8/E with high speed paper tape reader, a real video terminal (only 12 lines) and 4 noisy teletypes [like a VW bug crossed with a typewriter]. I was the chief assistant. I could do a cold start of the computer by toggling in the bootstrap sequence. I could start the software called "Multi-User BASIC" by configuring the about of memory (16K? 32K? 12-bit words). I knew all of the BASIC code for all of the games we had, and liked to tinker with them.
In 1979 at the age of 15, on a lark, I type up a resume on a typewriter and send it in to Digital Equipment Corp. The resume and cover letter are forwarded to their internship program. I receive a summer job programming for the amount of $5/hour. I develop simple database applications for their quality department. I am surrounded in the internship by college students.
Speech and Language
Frequently I have difficulty answering the right question. The trigger which caused me to write this essay was one of my Doctors asking me if I liked to write. I answered that I sometimes write at work. And back a few years ago when I was manic, I had hypergraphia and filled a whole box of journals with thoughts and feelings. He went on anyway, and said that, since I was able to articulate my conditions so clearly, perhaps I should write them down. Oh, he was just asking if I would like to write something!
Often when I am asked a question, I over anticipate what the asker might have in mind. Do I need to defend myself? Am I in trouble? Does the person asking have the historical context? Does the person asking know that their question has multiple subtle interpretations? Or that there could be multiple answers depending on their time and resources involved? Did they ask the right question? Should I reword it for them? All these things run through my head and cause me to respond with To Much Information.
One of my favorite examples preoccupation with Jargon is a collection of slang from the computer culture of the 1970's. It was called The Hacker's Dictionary. http://www.dourish.com/goodies/jargon.html
I studied the Hacker's Dictionary. I liked reading the Hacker's Dictionary just for being a dictionary. In the era from 1978-85, I knew people who worked on the college mainframes or worked on them myself. At that time, hacker speech was a normal part of our vocabulary. I liked to slip hacker phrases into my everyday life. Such as "he's some RANDOM guy from the English department" or "I can't PARSE that" or "We're going to LOSE BIG here". I liked "bogus", "canonical", "feature", "hack" (high praise) and of course "kludge" (disrespected insult). You might say that hacker culture was a dialect and its own private world, and I loved to live it and use it, even in the outside world.
Motor and Sensory Perception
It was 2007, at the age of 44, when I realized that I hated water. Or that the feeling of water was painful to me. Or that the minutest difference in the temperature of water causes me extreme amplified feelings of the stimuli. I remember as a child being distrustful of the shower because of its fickle behavior, having a handle whose meaning changed depending on what room you were in. How you had to work to adjust it just so, and then having the temperature jolt high or low at a whim while it was running.
It is 1971 and I am to take swimming lessons in the local lake. I am told to walk out on the dock and jump in the water. I do this and the water feels like needles, extremely cold, like being plunged into ice water or being shocked. It is painful to make this transition quickly. And I do it again, day after day.
It is the 1990's and I am still married and raising my children. My children love the water. Some of my children find the water soothing, and quite enjoy taking a bath. I never take a bath: I don't lie how it feels and the disturbing signals. When we travel, I take the job of chaperoning the children in the pool. In each case, it takes my body five minutes to acclimate. My children have already jumped in without a moment's thought. Five minutes for the pool. Twenty minutes to get all the way into a hot tub.
I am very sensitive to noise. I cannot study or read if there is any music or distracting talking going on. I used to have to ask my roommate to wear headphones while playing his music while I was studying. Sometimes, I had to ask him still to turn down the volume because I could hear the sound in the headphones. At home, there is only a small range of volume at which the TV can be set at, or otherwise it disturbs me greatly. Even if I am not in the room, the ambient noise of something that is too loud bothers me to the point where I can't be in the house.
The processing of sound is also different for me. When we are driving and the traffic gets complex, I turned down the radio so I can think more. I cannot understand people when I am in a cocktail-party or noisy environment. I cannot easily discern the speech from the noise. It upsets me greatly if multiple people are having separate conversations near me.
One interesting thing I've noticed when watching movies is that I get more out of them if I watch them with the English subtitles (or closed-captioning hard of hearing-impaired) turned on. It seems as if the depth and appreciation of the movie increases by a third or more. I realize that with me, even though I hear spoken words, they don't fully sink in or register. I think sometimes that even though I can hear, I am actually deaf in terms of fully decoding human speech. I don't understand what people say and I miss a lot of the nuance. I wish that everyday interactions in the world were subtitled!
Late diagnosis
I asked a question at the start of the essay: why was it that Asperger's Syndrome was recognized as a standard diagnosis only in the mid-1990's, when presumably the condition has existed since the 1940's (and probably before)?
I don't know what the answer is, but I am offer this thought. When you look at the defining criteria for Asperger's Symptoms, they are categorical, that is symptoms for a symptom. Take "restrictive, repetitive pattern of interest and behavior". It doesn't say "pre-occupation with trains" or "memorizes names of stars". Normally, if you look at a diagnosis for depression, say, it might say "prolonged period of sadness". It doesn't say, "prolonged period of feeling something". That is, most diagnosis are for first-level experiences that are exact and specific. Asperger's symptoms can be about anything in a particular way, that makes them special.
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