With Death Comes Food:

Asperger Syndrome and Physical Therapy Practice 

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.   

Part II-Those Dorko Boys

 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. 

Part III-Asperger�s, Postural Instruction and Therapeutic Individuality 

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.