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.
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
According to the UCLA
psychologists, G has "Asperger's syndrome" (see Uta Frith, ed. AUTISM
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
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 behavior, and curiosity
about the environment. (this fits.)
E. Does not meet criteria
for another specific Pervasive Developmental Disorder. (maybe.)
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
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.
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
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
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 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-Counseling 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-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.
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