Barrett L.
Dorko, P.T.
�My language has no words for hello or goodbye�there
is no translation for �friendly� or � mannerly.� People who live in
artificially complicated situations call a life such as mine �simple,� but
everything looks simple when you leave out the details, the way a planet looks
smooth, from orbit. None of this is simple, though it�s easy enough, when you
know how to do it, when you are aware of the details.�
From Solitude by Ursula K. Le Guin
�With death comes food.�
Two years ago I heard my brother Kevin say this in the
kitchen of our father�s home. At the time, our father was down the street in
Jenkins Funeral Parlor, waiting for his children to stand near the coffin and
greet his friends.
Two nights earlier I sat on his right and watched him
struggle for breath hour after hour. I held his hand, spoke quietly into his ear
and answered phone calls from my siblings on either coast. Kevin sat on our
father�s left, slumped and perfectly still in a generic hospital visitors
chair. He was reading the John Grisham novel, A Painted House.
In 1944 a Viennese pediatrician named Hans Asperger
carefully studied an unusual group of young boys. They displayed �a paucity of
empathy; na�ve, inappropriate, one-sided social interaction; poor nonverbal
communication, clumsy and ill-coordinated movements and odd posture� (a
description from the Yale Child Study Center). These children weren�t
nonverbal and volatile in the manner displayed by the autistics described by
Kanner at Johns Hopkins one year earlier and there was no obvious mental
retardation. In fact, the boys tended to display a remarkable focus and ability
to memorize large amounts of unusual and arcane information related to subjects
they found fascinating to the point of obsession. They tended to express this
knowledge at inappropriate moments.
Asperger�s clinic, a place that employed gentle,
intuitive care for the boys he felt had a neurologic as opposed to a psychiatric
disorder, was destroyed by Allied bombing and his work wasn�t translated into
English until 1991. Asperger�s Syndrome first appeared in the Diagnostic
and Statistical Manual of Mental Disorders (DSM-IV) in 1994. You can
read a great deal about it in books written on the subject and web sites devoted
to the study and understanding of Asperger�s. Temple Grandin, a woman I
described as a �recovered autistic� in a 1992 essay, Temple�s Gift,
periodically appears in the media as the author of books on the subject of her
mental make-up and she has turned her fascination with animals and design into a
lucrative career. Oliver Sacks writes of her in An Anthropologist on Mars
where he also comments: �Whether Asperger�s syndrome is radically different
from classical infantile autism or whether there is a continuum is a matter of
dispute. It is also unclear whether this continuum should be extended to include
the possession of �isolated autistic traits�-peculiar, intense
preoccupations and fixations often combined with relative social withdrawal or
remoteness�� Sacks suggests that Asperger individuals can reflect upon and
express the nature of their condition, while the autistic cannot. He also
mentions the emotional affect in this condition, quoting a young man whose
mother had recently died of cancer. When asked how he was doing the boy says,
�Oh, I am all right. You see I have Asperger syndrome which makes me less
vulnerable to the loss of loved ones than most people.� It is this seemingly
odd lack of appropriate emotional expression or even the evident sense of it
that sets those with Asperger�s apart, and, I would contend, makes it exactly
the worst sort of condition to have in our culture.
Despite this, Lawrence Osborne in American
Normal: The Hidden World of Asperger Syndrome says something fascinating
in his introduction; �Asperger Syndrome has become unexpectedly
fashionable. More, it has become perhaps the first desirable syndrome of
the twenty-first century: a terrible burden yes, but also proof of eccentric
intelligence, of genius even-and at the very least, of that increasingly rare
commodity, individuality.� I found Osborne�s book riveting and
have used his premise, that Asperger�s is most accurately seen as a normal
personality variant rather than a disorder requiring treatment, to connect it to
modern physical therapy practice.
It is easy in the world to live after the world�s opinions; it is easy in solitude to live after our own; but the Great Man is he who in the midst of the crowd keeps with perfect sweetness the independence of solitude.
Ralph Waldo Emerson
After living in my father�s house for nearly fifty years
my brother faced the task of moving out last summer. I watched as he grew even
more still and immersed in his tightly controlled world but had no choice but to
leave him with the job of sorting through his collections of small stuffed
animals, 50s TV memorabilia and shelves packed with books. The actual carrying
out to the car and moving was my task. Kevin�s most prominent possessions are
the videos of old movies. Hundreds of them. Though a few classics appear among
the titles most are unknown to virtually anyone but the people who made them,
and Kevin.
Like autistics, Asperger people often have a deep
appreciation and desire for sameness and routine and will approach new and novel
situations with trepidation and discomfort. I anticipated Kevin�s resistance
to this move though I wouldn�t say I understood it. My recent reading about
Asperger�s has made it possible for the first time in my life to do more than
describe my brother. Now I can explain him, and that, believe me, has
been a great gift. Commonly, a large portion of a person with Asperger�s
routine existence includes periods of solitude. They need this more than would
ordinarily be considered �normal� and will eventually fashion a life that
insures it. George Bernard Shaw once said, �Loneliness is a defeat, solitude a
triumph.� A largely solitary life such as Kevin�s is not without its measure
of defeat, but to be alone regularly is, for him, both necessary and desirable.
It was difficult, but once he grew used to the new routine of apartment
living Kevin was able to take comfort again in his possessions. He seems
content, and, after a long silence, he talks to me. He moves through his
neighborhood in his own way and bothers no one unless they are bent on making
him behave like the rest of the world.
But how unusual is my brother�s behavior? Dubbed �The
Geek Syndrome� in the popular press, Asperger�s either in its more profound
manifestations or in what are proposed to be its �shadings� has long been
depicted on TV and in the movies in characters devoid of social skills or
fashion sense. They are likely to be a peripheral figure used for comic relief
and known to possess a special gift for some esoteric talent, typically in the
realm of mathematics or, more recently, a genius for computer programming. Think
Revenge of the Nerds, think
Miles on the TV series Alias, think Urkel.
In The Disappearance of Childhood Neil Postman
theorizes that if America is the first society to be totally dominated and
defined by twentieth-century technology, our normality is bound to be ever more
ruthless and narrow. Were it not
so, Asperger�s would be likened to a normal personality variant, both subtle
and fluid in many instances. Where, after all, does normality end and
abnormality begin? Evidently in the case of Asperger�s some people have a foot
in both worlds. According to Osborne: �Psychiatrists famously say that there
is a dash of autism in everyone.� It is a fact that in the clinical world
labels can be remarkably useful without necessarily being valid, and thus their
power and persistent presence. A child has no friends? Asperger�s. He is
obsessed with seemingly useless movement? Asperger�s. He doesn�t display
affection? Asperger�s. This is a sort of diagnostic trap that makes every bit
of seemingly odd behavior suspect and probably in need of modification. By
contrast, it seems that in the 60s, the tics resulting from typical childhood
fixations were not pathologized but rather were understood to be the unique,
incomprehensible meanderings of a child�s mind, designed to assist in the
growth toward individuality.
It�s interesting that the more recent literature on this
subject reports a slight societal shift not only toward understanding but even
more, graceful acceptance. Consider this from Tony Attwood�s Asperger�s
Syndrome: A Guide for Parents and Professionals; ��they are a bright
thread in the rich tapestry of life. Our civilization would be dull and sterile
if we did not have and treasure people with Asperger�s Syndrome.� The
press long ago identified Aspergerish traits in Bill Gates and Osborne writes of
a book that makes the case for its profound presence in Thomas Jefferson. The
strong genetic contribution to autism is well accepted in the scientific
community and the rise in numbers of these children is apparently seen in the
areas where one computer expert will find and marry another. Such familial
tendencies certainly explain a lot about my other brother, Drew, who lives
alone, eats the same meal each day, cannot abide small talk and maintains the
barest minimum of social contacts. My own tendencies toward solitude, pedantic
speech and routine mark me as well. It seems the three of us represent the
spectrum of Asperger�s presentation-something I�ve just recently realized.
Kevin spoke to me last week of finally acquiring the fourth in a series of early
mystery movies starring Boris Karloff. I used to shake my head in response. Now
I nod. When he said, �With death comes food� I understood that this was a
mild corruption of a line from the conclusion of the movie To Kill a
Mockingbird spoken by the film�s narrator, Scout. The exact line is
�Neighbors bring food with death�� She says this as we watch her as a
young girl walking her silent and solitary neighbor, Boo Radley, back toward his
home after he had saved her and her brother�s lives. Only Kevin would have
used this line to comment on the number of casseroles our father�s passing had
generated. And I suppose I�m one of the few people that would have recognized
the reference. I know I could say a lot more about this movie�s theme in
relation to this subject, but it�s time to move on.
Here I�d like to return to the quote that began this
essay. Le Guin�s short story from a recent compilation entitled The
Birthday of the World concerns an anthropologist who has decided to study
the people on a distant planet. Previous efforts to describe their life have
been thwarted by the fact that the adults on this world don�t talk to each
other unless it�s absolutely necessary. In their individual huts they sit
quietly, practicing methods of contemplation and awareness that are considered
essential for proper living. Aside from the vestiges of a few bare community
rituals that don�t include talking, the adults lead lives that appear simple
and full of routine. Of course, those who only orbit their existence ignore the
details. To me, it seems that Le Guin has created a world full of Asperger�s.
My brothers� lives also give the impression of being simple, and the method of
management I�ve been compelled to create has a similar appearance. Of course,
those of us who live this way know better.
Lawrence Osborne writes in American Normal of his own
Aspergerish traits. He adores The
Iron Chef (a cable TV cooking
competition) and watches it compulsively. He absolutely hates the novel The
Catcher in the Rye. He says, �(My
hatred) extends to its style, its tone, and what I regard as its ridiculously
undue influence. I would, if I were dictator, burn every copy of The Catcher in the Rye for
the greater good of humanity. I understand that this hatred is preposterous, but
what of it? Our hatreds are not just �perseverations,� they are also a
defense of our personality.�
Like Osborne,
I�ve developed a dislike for a popular aspect of therapy practice that I also
consider ridiculously influential-postural correction. Okay, I don�t
�dislike� it. I loathe it. While it is a fact that certain types of use can
produce enough mechanical deformation to account for a great deal of pain,
I�ve long felt that the traditional admonitions offered by therapists to
�sit up straight� or �stand tall� are not only completely unlikely to
actually change anything, I see this instruction as a distinct attack on
physical individuality and unique neurologic expression. This is done, of
course, in the name of health and ideal function. Therapists talk endlessly
about the deleterious consequences of slumping, how it crowds vital organs and
places appalling stresses on a variety of tissues. They often point out that the
awful appearance of �bad posture� far outweighs any comfort it might
produce. I�ve read of the implications of slouching that extend into the realm
of personal grooming, intelligence, morality and its non-therapeutic effect on
others. I�m not talking about pathologic conditions leading to obvious
deformity, of course.
I know that my
feelings about postural instruction aren�t entirely rational, and I�ve yet
to meet another therapist who reacts as strongly as I do to the subject, that
is, no one else I know actually wants to burn certain materials regularly
provided patients by competent therapists, but I�ve given up on trying to see
this in another way. My reaction personally to being told how to stand or sit is
visceral. I have a distinct sense of another criticizing my way of being in the
world and though I know that this is not what is meant, I cannot relinquish my
objection to what I perceive as a violation of something in which I find comfort
and personal expression. I take consolation in the fact that the literature
regarding the supposedly horrific consequences of slouching is almost entirely
anecdotal and that it has never been demonstrated that strengthening or verbal
coercion has any significant effect upon it. That being the case, why do so many
therapists insist that it�s so important?
Perhaps the answer
lies in our culture�s craving for harmless consensus. I�ve no doubt that my
profession is influenced by the society every bit as much as it is by the
science that is supposed to form it, and our culture increasingly chooses
appearance over comfort and health. I know this is certainly not a compliment,
but it isn�t as if I haven�t expressed this opinion before. To me, the
emphasis on erect posture has become more and more about looks and less about
evidence of illness in its absence. It seems that the simplistic view of
�postural correction� adopted by most therapists leaves little room for
healthy eccentricity or complex individuality. Like Asperger�s, postural
deviation from the ideal is mistrusted and seen only in relation to the cultural
norm. Over a century ago William James spoke of instinctive individuality in
this way: Patients operate like so
many lenses, each one of which refracts in a different direction one and the
same ray of light. That light
emerges from each of us, and perhaps physical therapy will eventually understand
that often it takes the form of posture.
When you leave out
the details of neurobiology that actually direct my personal theory and
application of manual care it looks pretty easy, but I know better. Now I see
that its success is dependent upon the patient�s commitment to instinctive
expression in much the same way my brothers� lives can only be authentically
lived by ignoring societal norms and following without apology their own
inclinations. Asperger called it �the miraculous automaticity of
vegetative life,� and I can�t imagine practicing any other way.
Now I know why.