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.
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 two parts are based on a letter I wrote to a
relative.
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 preschool) 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.
G's diagnosis was not thrust upon us by the followers of intellectual fashion. 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 "stigmatize" 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 preschool: he spent a bunch 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 occured 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 behavior (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 preschool 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 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 which 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 daycare and preschool 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 labeled 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 daycare and preschool 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 which 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 and his gi). 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.
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 summarizes 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) and 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 "momma'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 concentration 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:
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
D. Lack of any clinically significant delay in cognitive
development as manifested by the development of age-appropriate
E. Does not meet criteria for another specific Pervasive
Developmental Disorder. (maybe.)
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.)
self-help skills, adaptive behavior, and curiosity about the
environment. (this fits.)
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 e-mail 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.)
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 e-mail can be the kind of social situation I can deal with well. I belong to two, now three, e-mail 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 e-mail.
Third, _everyone_ on e-mail 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 e-mail (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 e-mail "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.
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.
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 e-mail 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).
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.)
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.
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.
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.
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.
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.
3. Let him have his privacy.
Absolutely.
All of these helped me figure out the rules of the game, how to interact with people appropriately. Co-counseling, 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.
Home to O.A.S.I.S.