Asperger's Syndrome Chronicles

 What follows are my thoughts about Asperger's Syndrome both as an observer and a participant. I hope my observations aren't too scattered. They started as discussions over CompuServe, a letter, and further thoughts.

The first parts relate to my son, who was diagnosed as having Asperger's. Since my 5 year-old son's name is truly unique, I've abbreviated it to "G" in order to protect his privacy. (I can imagine: "Oh, you're the famous G----- who I heard about on CompuServe!") I've also taken out any personal stuff about my wife and my relatives, since they deserve privacy. This makes my thoughts seem less personal, perhaps even less human. The first two parts are based on a letter I wrote to a relative.

Part I

Thanks for your concern about G. I should clarify what is going on with him. He is not "autistic" in the normal meaning of the word: the silent child who stares at the wall or dreams all the time, the movie "Rainman," Oliver Sack's January 1995 article in THE NEW YORKER, and all that. People who don't deal with him on a day-to-day basis typically see him as totally "normal."

You may have got the wrong impression from Mom's references to the readings I sent her on autism. They were really off base unless interpreted very carefully. G also does not have "attention deficit disorder" or hyperactivity, though some of what he's "got" is similar in some ways: there are some "attention problems." (No one has mentioned Ritalin or any other medication, by the way.)

According to the UCLA psychologists, G has "Asperger's syndrome" (see Uta Frith, ed. AUTISM AND ASPERGER SYNDROME, for the most recent stuff I've seen on the subject). He doesn't fit all of the criteria for this syndrome, but neither do the vast majority of those seen as fitting in the category. People are too complicated for academic boxes: it is my understanding that almost no-one fits all of the criteria of any psychological category. Such categories should be used to help us understand what's going on (or to get support from insurers, etc.) rather than to create stereotypes that limit thought.

Even though it is quite common these days to cavalierly dismiss the opinions of "experts", no matter how well informed they are, when one doesn't like their conclusions, the members of the UCLA team were neither following any kind of vogue nor trying to pull the wool over our eyes. As far as I can tell, abnormal psychology and psychiatry are not subjects that are prone to fads in the way that popular psychology (the kind of stuff that shows up on "Oprah" or "Geraldo") is. They deal with real people and real results. The diagnosis was based on an extensive battery of standard tests (and a psychologist's observations at G's pre-school) and fit with the standard categories in abnormal psychology as seem in the DSM-IV (the diagnostic "bible") and elsewhere.

These health-care professionals know that any kind of diagnosis of this sort can be devastating to parents and so are very careful. Further, no one gained any power or money or undue influence on the basis of the diagnosis. In fact, reading books and articles on Asperger's (and even on classic autism) that they recommended has been very revealing, giving all sorts of insights into G's problems.

The followers of intellectual fashion did not thrust G’s diagnosis upon us. In fact, it was the people from the public school system that seemed more "fashionable" in their use of rhetoric: they resisted any kind of diagnosis, saying that they didn't want to "stigmatise" him. But as usual, "fashion" simply reflected something else that was going on: I believe they simply wanted to save the city money in an era of cutbacks. In line with this, they tried to sandbag us by spending most of the time of our conference with them praising G for being brilliant, etc. It was nice to hear (and it's all true of course!), but we hated being manipulated, especially when such important matters are at stake.

We both worried about how this kind of treatment affects people who have never received the kind of professional training and advanced academic degrees that we have (and who didn't have a Ph.D. psychologist to back us up). I'm sure a lot of these folks are intimidated by the jargon and tricks and go away empty-handed, muttering about how all government bureaucrats are bad. As usual, the system works to the disadvantage of the disadvantaged.

The school system's treatment and their assumption that they could easily absorb him was naive even from their own point of view, since G had a lot of trouble at his first pre-school. He spent a lot of time in the principal's office and I had to break away from work to go there a lot to deal with toilet training "accidents." (There was one day, I recall, where G "did it" three times.) He also was in effect expelled from his second school because he couldn't co-operate or participate well in such collective activities as "circle time"; he was extremely resistant to transitions from one activity to another. The actual expulsion occurred when he reacted violently when another kid interfered with a structure he had built with blocks: he doesn't like his attention broken. After he'd been expelled, I took him to visit that school in order to say "goodbye" to the teacher (who he loved) and the other students. It was really obvious what something was wrong, since during a school assembly, he could not sit still at all and wanted to talk and participate in a totally inappropriate way. This kind of behaviour (which was also observed by our professional psychologist) is what led that school to first request and then require that we pay for a "shadow teacher" to back up the main teacher, something we could not afford to do. (The requirement that we do so is what is equivalent to expulsion.)

Whatever public-school teacher ended up with G in his or her class would have gone nuts. He needs special attention, along the lines of an approximate 1-to-1 or 1-to-2 teacher to student ratio, with the teachers knowledgeable of psychology. He also needs treatment that fits his problems, not being warehoused with the "retarded" and the like. Part of the problem for a teacher is that his problem seems so subtle; he seems so normal a lot of the time.

That's what G got -- and because we hired an advocate and went through an appeal process, the school system is paying for it (partly because we caught them in their trickery and incompetence). He's going to a therapeutic pre-school about 15 minutes from our house. It seems excellent and G really likes it. He has been very happy lately, compared to the hiatus period between schools. When I took him there for a visit before he was admitted, he told people that he loves to learn. Now it shows. Of late he's been very good at playing in a group of two or three friends, which seems a major step forward. One of the problems with Asperger kids is that they are very poor at playing with others their own age. (G is very good with girls who are two or three years older, and with one other boy.) He's still not good at "circle time" or other collective activities unless he's able to tell others what to do. (For his 5th birthday party, he thought up a game "pin the head on the dinosaur." He gave instructions to his Grandfather on how to make the equipment and to the kids on how to play it, rules that I didn't quite understand.)

The reason why autism and the like may seem to be an over-used diagnosis these days is that more kids are in day-care and pre-school than when we were young. With the more direct parental attention that was so much easier to arrange in the 1950s and 1960s, the social-development problems that come with autism and Asperger's are not obvious and create no big difficulties. (Even though teachers have a very hard time with G, baby-sitters love him.) (Asperger's, though discovered in the 1940s, is also a relatively new diagnosis among psychiatrists.) If we had been able to give him one-on-one attention consistently, I'm sure that we would have simply labelled him "difficult," a "dreamer," "one who has a hard time listening," or "a born philosopher" and left it at that.

It's good that G went to day-care and pre-school so that we could discover and deal with the problem early. This will make the public schools (or any schools!) better for G when he attends in a few years. Luckily, the public schools are much better here than in the rest of the city (despite the former's blunders so far) and G can get a lot out of them -- with our help. (I hope that the public schools are still around when G is ready for them!)

Our main goal is to teach G various skills that allow him to scale the barriers created by Asperger's. I think we are making progress.

We have also signed him up for karate lessons, starting with individual instructions (He loves it). Since the teacher recommends that he wait awhile for group instruction, we've gone back to swimming lessons. Team sports such as soccer do not seem to be appropriate for G, while he might learn some self-discipline and physical co-ordination from karate.

Part II: Back to his "syndrome."

Asperger's is on the high end of what the psychiatrists and psychologists call the "autistic spectrum" and is different in many ways from classical (Kanner's) autism that is so familiar. It is often seen as synonymous with "high functioning autism" meaning that people with it do pretty well, comparatively speaking, in society. But the non-academic description "the little professor syndrome" (in reference to the common stereotype of academics as absent-minded, abstract, etc.) seems apt. It's also much better than using the terms "nerd" and "dweeb."

As Lorna Wing summarises the literature, individuals with A's "usually manage very well at work, being models of politeness and conventionality, if sometimes with a somewhat pompous and long-winded style of speech.... Problems arise in more intimate relations within the family, where spontaneity, empathy, and the provision of emotional support are required." I wouldn't call G's natural tendency one of politeness, but otherwise this fits. He's good at spontaneity, but this often involves interrupting others in a rude way. He is good at following our rules such as that he can't play with a birthday present until he's written the thank-you note (with our help, of course). He is very good at throwing away the little knives and guns that come with some of his toys (as we insist he do). Except for his rudeness, it's quite possible that G will be attached to us for decades: many with A's become "mummy's boys."

As an indicator of how "normal" this is, consider Hans Asperger's 1944 comment that his syndrome represented an extreme case of "the normal male personality." As Wing comments, however, "whatever its scientific merit, this statement is a guaranteed party conversation opener," at least at the parties she attends. In any event, most of the folks with A's are male.

G is very verbal, charming, creative, loving, and intelligent (or seems to be to us!) but, if this diagnosis is correct, has a very abstract relationship with other people and his body. Fitting the above, he tends to be pedantic, to lecture people. Other kids stare at him in disbelief as he lectures to them about what he's playing at and as he tells them how to play along. He's very good at quibbling and (alas!) could make a good lawyer. He's not good at common sense, however, or at paying attention to us most of the time.

As mentioned, G is usually good with one or two other people, especially adults, but with a group of kids he tends to go off into a world of his own. He gets distracted or over-stimulated very easily, since (as with classic autism), he has a hard time filtering out a lot of the stimuli in his environment.

He does do well when he's concentrating on a single activity. In trying to deal with all of the stimuli he's bombarded with he tends to over-react, however, to build a wall that's too impervious to stimuli. He is very good at concentrating on something that he's interested in, but finds that he has a hard time paying attention to anything else or making a transition to some new matter (such as going to the bathroom).

I am always a bit amazed that he can be so attuned to the computer when he was just barely toilet trained when he turned 5.

By the way, I think it's much more pleasant to think that G doesn't listen because he has a hard time filtering out stimuli than because he simply doesn't want to listen. It's also better that his toilet-training problem is more than simple defiance. (It's even better that he's doing very well on this last issue these days: right before opening his presents at his 5th birthday, he volunteered to go to the bathroom! This kind of behavior has continued.)

Not only does G have a hard time listening, but he has a hard time looking at someone when talking to them. He also has some pretty harmless autistic symptoms such as over-sensitivity to the fabric of his clothes, a tendency to hit himself softly (what's called self-stimulation), and a propensity to flap his hands a lot. He's also not as coordinated as most of the kids are at his age. (One article I read suggested that the big difference between A's and high-functioning autism was that people with the former have worse physical co-ordination.) Luckily he doesn't have a single obsession the way many kids with A's do, but instead has a variety of different obsessions, which change often. He has a very active and varied fantasy life which he puts into action in his play; the UCLA folks say that's a very good sign for his prognosis.

This syndrome is very common among research-oriented academics who lecture to large audiences, including (as I've come to realize) myself. If we can get over the problem of being "socially challenged" (to use the current cliche-speak) we can make major contributions by applying our ability to concentrate on a single topic. Also, Asperger suggested that since those with his syndrome look at the world in a completely different way from the vast majority, there is a great potential for making break-throughs in their fields by developing new insights. (Some think that Albert Einstein had A's.) Of course, there are others with A's who are more like the character Cliff on the old sit-com "Cheers" (a boring expert on trivia) -- or even worse, such as the man who is an expert on train schedules. I think that G is more likely to end up an academic than a Cliff, since we're working on it early.

I'm a professor, while one of my Aspergerish relatives is too. My father was a wannabe professor, who lectured for a living and at every dinner hour. While reading I realized that academia probably rewards those with Asperger traits because the "powers that be" have them themselves. A system has been set up that is of, for, and by those with Asperger's! It's like the way business was set up for and by the sociopaths. :-)

The main thing with A's seems to be some sort of neurological blockage that may be genetic in origin but is often reinforced by poor parenting or other environmental problems. It makes our communication with other people and with our own bodies very difficult, so we tend to have very artificial and non-intuitive connections with the world. The stuff that comes "naturally" to others by picking up visual and other subtle cues (others' body language, facial expression, etc.) must be learned _intellectually_, often by a painful process of figuring out what "normal" people do and say in social situations. We usually don't have many -- or any -- friends and thus tend to feel very lonely and depressed. Unlike classic autism, those with A's clearly want friends and want to fit in. (My guess is that people with classical autism are so totally overwhelmed by stimuli that they clam up completely.)

G has people with A's or Aspergish symptoms on both sides of his family tree. Of course, one can't say the problem is totally genetic: he inherited a family social environment (a family culture, role models) along with his genes. My wife also had a very difficult pregnancy: she went into labor three weeks before G was born, and he came out seven weeks early. So pre-natal problems may have played a role.

But as I understand it, A's is a barrier that is always there, but like other barriers, can be scaled via hard work. The more one learns about dealing with the social world, the better one does. After writing this, I read an article by Peter Hobson, who suggests that autism is a bit like blindness: it represents a perceptual block that can cause a whole lot of other developmental problems if not treated right. But one can get over in many ways (as with learning Braille), but is always a handicap: a blind person can never learn to drive a car, for example, at least not with today's technology. That fits my intuition.

I found the DSM-IV definition of A's, as posted on Compuserve, from the draft version of the DSM-IV. It is useful to summarize and compare to G's case:

A. Qualitative impairment in social interaction, as manifested by at least 2 of the following:

1.marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction; (this fits G)

2.failure to develop peer relationships appropriate to developmental level; (this fits G, though he's getting much better.)

3.markedly impaired expression of pleasure in other people's happiness; (I don't know.)

4.lack of social or emotional reciprocity. (This seems likely for G.)

B. Restricted, repetitive, and stereotyped patterns of behavior, interests and activities. (G fits this, except that his patterns aren't very restricted.)

C. Lack of any clinically significant general delay in language (e.g., single words used by age 2, communicative phrases by age 3). (he's been very good with language for a long time, using the subjuctive and the passive voice just like a good academic.)

D. Lack of any clinically significant delay in cognitive development as manifested by the development of age-appropriate self-help skills, adaptive behaviour, and curiosity about the environment. (this fits.)

E. Does not meet criteria for another specific Pervasive Developmental Disorder. (maybe.)

Part III

Now I want to turn to some more personal views on Asperger's syndrome and the criteria for fitting in this category.

As I said above, dealing with the fact that my son has been labeled as having A's led me to the realization that I'm pretty Aspergerish myself. I used to think it was just an inferiority complex, lack of self-esteem, that kind of thing, but the more I read and think, the more I think I'm "high-functioning Asperger's" (after 43 years of learning to deal with it). Otherwise, I can't understand why I have really weak emotional connections with my family and friends, why I fail to mourn at funerals, why I spent a lot of my youth drawing maps of imaginary places, watching old movies on TV I can't remember, etc. Otherwise, I can't understand how the TV can totally grab my attention away from people and other stimuli. (BTW, as usual, once I realized that this latter problem existed, I got better at preventing it.)

I do think that low self-esteem has something to do with my problems: A's makes me feel inferior or depressed, which makes it harder to climb over the barriers created by A's. Luckily, I'm usually not in a vicious circle these days.

By the way, not being a mental-health professional, I really shouldn't diagnose myself. (According to professionals, even they shouldn't do so.) In the past, I fallen for self-diagnosis too often (at one point wondering if I were schizophrenic after reading R.D. Laing's THE DIVIDED SELF. (I'm probably just schizoid, like everybody else!) My wife tells me that medical students fall for the same trap, thinking they might have each disease they study. But the Asperger's materials sure seem to fit my experience. It's a useful working hypothesis, to be modified as I gain greater self-understanding. I hope that my working hypothesis doesn't bias my reporting in a way that simply throws back what the theory says instead of giving people authentic insights into the problem.

I think I'm over a related problem, that of seeing A's everywhere. I've speculated that musicians Bob Dylan and David Byrne have A's. An email friend suggested that former California governor Jerry Brown has it, and I agreed. (Others point to Lewis Carroll and C.S. Lewis.) But that's all idle speculation. We don't know these people well enough to say anything.

To get away from that kind of thing, it's useful to restate and examine the definition of Asperger's in terms of behavior that shows up in the an article by Christopher Gillberg in the Frith book before I get into how it feels. These 6 main criteria are completely interrelated, but I'll try to separate them. To a large extent, I've grown out of Aspergerish behavior, while I think I never fit the criteria exactly. (They are not the same as the DSM-IV criteria, which I found later. But they are similar.)

Severe impairment in reciprocal social interaction. (I think I fit 3 of Gillberg's 4 detailed criteria; he requires only 2 to qualify a person as having A's.)

I have a hard time interacting with peers except on a superficial emotional level; sometimes I can do better on the intellectual level. I can't say that I have any close friends except my wife (and I would guess I'm not as close to her as most husbands are). I don't have a group of people I hang around with when I'm not working.I would like to interact better. This last is contrary to one of Gillberg's criteria, but fits with a lot of the cases of A's that I've read about.

On the other hand, I have had a hard time understanding social cues to fit into group conversations: I almost always feel after I say something that I was ignored and wish that people would give some more explicit sign that they heard what I said.

I probably repeat myself too much as a result. (Echolalia is common among folks on the autism spectrum. My wife has accused me of a little of this: it's hard to know what to say to G, so too often I repeat what she just said. This probably isn't "classic" echolalia, though.)

I usually feel uncomfortable with groups, alone in crowds. I can get "overstimulated," either to get too excited or to "zone out" from the group altogether.

As for "socially and emotionally inappropriate behavior," I can think of all sorts of different cases where I did things that just didn't fit in, in addition to unnecessary repetition. For example, I've often been sitting at a table in the lunch room and I've inappropriately intervened in a conversation at a neighboring table. (The same happens while waiting in line, an activity I hate.) I was having a hard time filtering out that conversation, was stimulated by it, and jumped in, completely out of place.

(I'm better on this one now that I'm aware of the problem.) There are many worse examples than which haunt me now and then.

I have recently found that email can be the kind of social situation I can deal with well. I belong to two, now three, email discussion groups and probably participate too much in them; whether I'm involved "too much" or not, it that is my reputation that I participate a lot. When a friend of mine sees me, he usually says, ironically: why aren't you at your computer, involved with the discussion?

There are at least four reasons I feel right in this kind of "social situation." First, I am usually bubbling over with ideas: I read someone's contribution and often find myself stimulated to think about it and then come up with some idea or some connection with some other field or discussion. It really feels good to be able to respond to the stimulus rather than thinking about it alone, unable to talk about it or to instantly write it up as a scholarly article. Luckily, the social atmosphere of the groups is very informal. (I also never state my views as _conclusions_, but as questions or as working hypotheses.)

Second, as you've probably noticed, I tend to think in paragraphs rather than sentences, with all sorts of thoughts that only make sense when put into context with each other in an orderly way. I can do this over email.

Third, everyone on email has a hard time picking up social cues; people have to be trained to communicate without getting into all sorts of silly disagreements. For example, people have to use little "smileys" (such as ":-)") to explicitly indicate that what they say is a joke. Due to the nature of the medium, I am far from alone in my Aspergerish tendencies.

Fourth, I get the impression that people actually read my contributions, unlike my published academic articles. I've gotten more positive reinforcement over email (and from all over the world) than I've ever gotten from academia. (I've also gotten involved in a lot of silly fights, due to inevitable misunderstandings.)

Some people complain that the email "community" isn't real, since it lacks face-to-face communication, it's hard for more than two to participate at once, etc. But at least it helps people like me.

all-absorbing narrow interest (three criteria, only one required).

I don't fit this one very well. Like G, I am not the type who's totally obsessed with a single interest, excluding other activities in an extremely repetitive way, emphasizing rote more than meaning. I have a bunch of different interests (though maybe the scope is too narrow, since they all tend to be academic or computer-oriented or these days, Asperger-oriented) and I'm extremely interested in the question of "why?" instead of mere description.

My wife says I repeat myself a lot, as did an ex-girlfriend. I've tried to reform myself on this and I think I've largely succeeded. I have three thoughts on this one, though.

First, I think everyone, including my wife and ex, repeats themselves a lot. It's just easier to notice others' repetition than one's own.

Second, some of my repetitiveness is simply due to a poor sense of how to do "small talk," fitting in with the above. By the way, I do not bore people with long-winded discussions of my work and hobbies, since I don't think they're interested in them. Instead, I just don't talk about them.

Third, most of my repetitiveness (what these shrinks call "perseveration") is in my mind and is not vocalized. I have to work on avoiding this kind of obsession.

imposition of routines and interests, on myself and on others. (Two criteria, only one required.)

I don't think I impose routines on others very much if at all. Instead, I guess, my response is to try to avoid situations where I feel it's necessary to impose my routines on others.

I am much better at avoiding routinization of my own life and interests than I used to be. About 20 years ago, I was extremely depressed and decided that one problem was that I was simply bored. One of the main reasons I was bored was that I was stuck in a rut and was scared to get out of it. So I decided that one thing I've got to do is to take risks, try to avoid repetition, and realize that if others can do such things, I can too. Among other things, this thought helped me decide to get married and to have a child.

I do have my routines, such as excessive playing with the computer (including silly video games that grab my attention) and too many visits to the email program to see if I've received any new messages. In the morning, I like getting up before anyone else so that I can have a quiet time to get ready for the day. I get very irritated when G gets up too early and breaks my routine.

I don't know if it has any connection with A's or not, but sometimes I have a very sense of what it is that I like at all. Especially when I was young, I've gotten interests or ideas of what's good from others. About 20 years ago, I realized that I didn't have my own laugh, that I was imitating other people. I don't think I do that any more. I also don't take on and imitate others' viewpoint as much as I used to. It is so amazing how clear and firm people's opinions (both factual and ethical) are. I wish I could be like that.

I guess I have a weak connection with the real world that pushes me to doubt the reality of my perceptions of the external world, even though these days I have very clear mental conceptions most of the time.

It's possible that these perception problems are related to my poor memory or not. I really have a hard time remembering things that I can't put into a clear theoretical framework. For example, I can't remember prices at the store. More importantly, I have a hard time remembering people's names, even if I've asked them several times. I can remember someone's name for while and then forget it if I don't see them for awhile. Maybe it's because I get too much stimulus. Or maybe it's simply a bad memory. The latter would fit the fact that many people with A's seem to have extremely good memories (like the guy who knows the train schedules by heart).

Speech and language problems. at least three of the following required: delayed development, superficially perfect expressive language, formal & pedantic language, peculiar voice characteristics, impairment of comprehension (missing or implied meanings).

I don't know if I had delayed development of speech or not, or whether I had perfect grammar early or peculiar voice characteristics when I was young. I doubt that I have them now. I do know that I try to avoid overly formal and pedantic language. This is partly a reaction to being too formal & pedantic in the past and partly a rejection of the pretensions of academics.

On the last, I have a hard time with social cues and therefore sometimes have a hard time comprehending things that people say. For example, it's only relatively recently that I realized that when people said things they didn't usually mean it in an ironic way. (It's more common for people with A's to miss irony altogether, taking everything literally, but my case is similar.) It's also relatively recently that I realized that I had to avoid being ironic all the time, since most people didn't get it.

It's true, I often have a hard time with idioms and for some things I take words too literally. For example, if I say "I hurt my thumb," my wife says "I'm sorry." It is only recently that I stopped taking this phrase literally. I used to respond: "it's not your fault."

I am acutely aware that the meaning of words depends crucially on their context, both in paragraphs and the social setting. I would guess that most people came upon this kind of understanding intuitively. But I developed it intellectually.

I do try to be correct in my grammar, even though I know that the rules of grammar are largely arbitrary and sometimes silly. I am a bit obsessed with problems of inadequate communication, because I have had problems with communicating with people in the past. It is very frustrating when people don't understand what I am saying.

On pedantry, there's no doubt that I like to lecture. I'm probably an excellent lecturer (in my humble opinion) but I am not a good teacher, at least not the kind of teacher who fits well with the small liberal arts college ideal such as the one I work at. I'm not very good at interacting with the audience and I have to make a conscious effort to relate the economic theories I present to current events or the students' own concerns. (I'm often lazy about teaching, so I don't follow through on the latter.) Even when I am good, I have a hard time telling if that's so.

(The laziness about teaching may arise from my tendency toward perfectionism. Often, I decide that perfection can't be reached so I simply give up. I also tend to be interested in absolutely everything, so that drags my attention away from teaching. I guess one can connect these to A's.)

Non-verbal communication problems, at least one of the following: limited use of gestures, clumsy/gauche body language, limited facial expression, inappropriate expression, or peculiar/stiff gaze.

I don't know if I do or did any of these. I'd have to talk to my mom.

I probably move my gaze about much more than other people do, not looking at their eyes (though I'm better at this than I used to be). I'm always seeing lots of different things that can easily distract me from a conversation I'm having with someone. (Alternatively, I tend to jump from subject to subject.)

One way to avoid being distracted I've found is to have one single object to concentrate on besides the person I'm talking to. Just the other day, when a behavior therapist was visiting my wife and me to talk about our son, I found that I had an easier time hearing what she was saying -- and keeping my attention on her -- if I toyed with G's Legos. It was something trivial that distracted me from paying attention to all of the different things that could distract me from her. It probably was impolite and thus mildly unpleasant to her, but it worked for me. I've been thinking of getting worry beads to given my hands and mind something to play with. It's better than smoking, after all.

Strangely for someone who works in academia, I have a hard time reading. I guess it's the attention problem at work again. I'm pretty good at reading when I am doing something on the side, such as eating, drinking, or going to the bathroom. As above, having two foci helps me filter out the other thousand. Alternatively, I can be totally focused on a book or article because I'm obsessed with it. (This once happened due to side-effects of the anti-inflammatory Indocin.) Much more common is getting reading a book in an interactive way, criticizing or editing it. This works very well. Unfortunately, I don't do enough of this.

I can get involved in a book and I am always trying to do so (books are easier to deal with than people). I get very irritable when someone breaks my efforts to concentrate.

This discussion gave me an insight about my relationship with my (Aspergerish) father. He was often fixing things around the house and when I was a kid, I wanted to see what was going on. He always seemed to get irritated and tell me "get out of my light." It was the same phrase every time, or close to it, a sign of perseveration. But maybe it wasn't the light and he was having a hard time concentrating, filtering out all the stimuli. In this interpretation, he was trying to build a wall to help him do the job (which was even harder given his clumsiness); my eagerness was breaking his efforts to build that wall.

Motor clumsiness.

I definitely suffer from this! Part of this is that I get so many stimuli not only from the outside but from my body that it makes it hard to control my body. I am highly embarrassed to admit that two or three times I've hit my wife and hurt her -- totally due to my clumsiness. Luckily she didn't get a black eye or anything and didn't take it personally. I've been good at avoiding this kind of accident lately, too.

Of course, another reason I've always had problems with athletics is that I "space out." I remember being the center in touch football games (a role that the other kids thought involved the least athletic ability) and missing that it was time to hike the ball. In graduate school, I played soccer a few times, exhibiting the other extreme. I would focus entirely on getting to the ball and kicking it, almost entirely ignoring the other people on the field. (Peter Hobson says that autistics treat other people like pieces of furniture.) I would kick the ball in the right direction, but not as a pass to someone else on my team.

In summary, I may or may not fit the criteria for A's. But at least looking at Gillberg's list has helped me with self-clarification.

Part IV

Now let me tell you how more specifically how it feels.

It's as if I were always speaking and hearing a foreign language where I had to always translate from that language to my own and back again. (You're supposed to think in the foreign language to do it right, but I don't.) This feeling pervades my whole life, even though I deal with it much better with it than I used to.

Temple Grandin, I'm told, describes her experience with autism as being as if she's an anthropologist from Mars. That fits my experience; following this, this manuscript is titled the "Asperger chronicles" to ape Ray Bradbury's "Martian Chronicles."

By the way, this is not a matter of reading about autism and A's and then convincing myself that I fit the description (which would fit the old garbage in/garbage out problem). A couple of years ago, I told two academic friends that I feel like an "alien in human society." They said they felt the same way. (In hindsight, they seem Aspergerish too, though I know only one of them very well.) I was thinking in terms of the sociological theory of alienation, but it was a specific kind, that of alienation _from society_. Anyway, it was not simply a theory, but a matter of how I felt.

One thing I know is that I have to have a theory about everything. Theories are my life, since they make life make sense, and make it easier for me to talk and act and interact with other people. (Many of these theories are not true theories but are instead empirical generalizations.) Without theories (working hypotheses), everything is confusing. It's really too bad that social science has to deal with a subject as difficult as people (unlike physics, etc., which seems to find it easy to make its subject make sense). If social science were more able to make sense of people and the social world, it would be much easier for me. Of course, people would be less interesting to the extent that they were more predictable. On social relations, I tend to have a script prewritten in my head. It does vary over time (since I make an effort not to be boring), while I sometimes am very spontaneous. I make an effort to write my scripts to allow for spontaneity that isn't socially inappropriate.

Part V

This part is a response to some comments on CompuServe, continuing my personal impressions.

I don't remember the details but I see that the two authors are concerned with Aspergerish husbands who speak too loudly (inappropriate social behavior) or don't like to read bedtime stories to children (lack of social empathy). Maybe I can say something about that, having these tendencies myself.

On being too loud: I guess I'm too loud sometimes, because my wife every once and awhile tells me to turn down the volume. Sometimes I don't think I was really too loud; but sometimes she's right. But it's frustrating. I get too loud when I'm being enthusiastic about something (like talking to my son, who likes to be loud, a normal kid's behavior that probably has nothing to do with his Asperger's); I guess the problem is that when I get enthusiastic, I stop paying attention to the volume.

When my wife tells me to lower the volume, it feels as if my enthusiasm is wrong, is being beaten down. I have to figure out how to be enthusiastic while paying attention to my appropriateness. It's hard around here, since both my son and my wife interrupt me a lot. Also, in an effort to avoid being interrupted, I sometimes turn up the volume. This doesn't make any sense, upon thinking about it, since it just makes everyone turn up the volume.

Interruptions are hard on me, because, as mentioned above, I tend to think in paragraphs. When I'm interrupted, it often breaks my train of thought altogether, so that I lose what I was talking about. I usually remember it later, but it is hard to bring up again, especially out of context. I have a hard time bringing up my interests with other people anyway and having to try again is doubly hard. Being unable to bring up things I've thought about is depressing.

On reading stories to the kid: I do this a lot, about 50% of the time. I know all the benefits of this that were listed and they make sense to me intellectually. The problem is that it's hard to do it. I get bored and yawn a lot. I don't like TV very much (not as much as my wife), so unlike the husband mentioned, I'm not yearning to watch TV but to do stuff like paying bills, fixing things around the house, or whatever.

The problem, I guess, is that while I'm reading stories, I see all sorts of things. I have a hard time filtering out stimuli. I see all sorts of little jobs that I should do to fix up the house, all sorts of clutter (billions of toys), things out of place, etc., etc. (BTW, when the stories are over, I don't do well a fixing up the house. I am okay at paying bills and they're impossible to avoid for long.) Reading stories doesn't grab my attention enough. It doesn't really need all of my attention and it's too easy. It's not the kind of intellectual problem or computer game that I like to focus all my attention on. It helps if I've had a glass of wine, which allows me to dull some of the effects of over-stimulus. It's possible, however, that the wine encourages yawning.

I think I'd do better if the house were less cluttered. It's a bit depressing that this clutter has entered my own habits. I have a much harder time running my work in an uncluttered way than I used to. Even my at-work office has reached the melt-down level of clutter.

Also, my son wants to interrupt, to squeal, to ask questions, to add his insights. (As mentioned, interruption causes problems.) I don't deal with his spontaneity as well as I should. I don't feel enough of an emotional connection to deal with it well, to get into his game while keeping it in control. I probably over-control, setting too many limits. I really don't know how to play with children (I relate to adults better). Maybe I should read a book on this. (My wife once gave me one; it helped but it doesn't fit his age level any more.) I wish I had a theory of how his mind works and how to play with him, the general rules of the game. My personal experience, alas, becomes obsolete as he gets older and changes. All of this makes me uncomfortable while I read stories, hoping to get it over soon.

After writing this, I realized that this fits with Frith's "theory of mind" that says that those with autism, including Asperger's, have a very hard time getting any kind of empathetic connection with others.

Part VI

In a CompuServe message of May 26, 1995, J.B. has some recommendations for how to relate to Aspergerish men. (I coined the word "Aspergerish" over CompuServe and now it's entered the language!) I want to think about and comment on her four points.

1. Use Humor

This is almost always a good idea, with almost everybody, whether they have A's or not. On the other hand, I'd be careful with irony and sarcasm. These are hard not only for those of us with A's but also most people in the US. They work well with those with whom one has a common culture or good rapport.

2. Be overly gentle, since "these guys get offended at everything. They think the whole world is hostile."

My wife read this and in essence said "Amen!" It's quite possible that she's right that I'm over-sensitive. It's also quite possible that it has something to do with A's. Of course, the tradition role that men in general take in society involves tremendous amounts of competition (compared to the tradition role of women), so it may be simply a matter of importing this competition into the family relationship.

Maybe the problem of over-sensitivity arises because I'm uncertain about the rules of the game. I think I know them and I'm usually struggling to follow them. And suddenly, I'm being criticized. Either my wife isn't conscious that I'm trying to behave well or I'm not picking up the social cues that she's conscious of that. Worse, the rules sometimes seem to have changed. Or maybe it's that I missed how the application of the rules (or the rules themselves) change with the context. Of course, sometimes I'm criticized for something I did because I'm lazy or distracted.

By the way, I also have a hard time criticizing my wife. She's been irritated that I have made the mistake of taking her criticism of me as a cue that it's criticism time and that I should bring up mine. She's right it is a socially inappropriate response.

I guess my problem with criticizing is partly a matter of my own low self-esteem. But I also have a hard time communicating. The criticism should be in context (a paragraph, not a sentence) and often I don't really know what the context is.

3. Never confront him in front of ANYONE.

Yeah. The problem is that it's hard enough to keep up a front for one person, to figure out the rules of the game and then obey them. Adding other people to the mix makes it triply difficult. There are two sets of rules being followed, two different types of social relationships. Dealing with criticism in this context leads to overload.

4. Let him have his privacy.

Absolutely. 

Part VII: The good news

All of the therapy I've been through has worked, helping me deal with Asperger's. I've gone through a spontaneous, self-invented, form of self-therapy centered on writing in my diary; a humanistic and egalitarian therapy called Co-Counselling in which people take turns being the therapist and the patient; humanistic therapy centered on helping me treat my "inner child" well; Reichian therapy helping me get in touch with my body; and therapy helping me with the "nuts and bolts" of physical intimacy. All of these have helped. I guess it's because I'm like the light bulb in the old joke "how many shrinks does it take to change a light bulb?" I really want to change.

All of these helped me figure out the rules of the game, how to interact with people appropriately. Co-counselling, for example, made it easier to listen to people, as if I were a therapist, giving them positive reinforcement. It's still uncomfortable for me, but it's a pretty popular social role.

Of course, I still have problems with linking up with people. The barrier is still there, even though I am much better at climbing it than I used to be.