Wednesday, August 27, 2014

ASPERGER'S;THE MISSED DIAGNOSIS PART TWO



                                             PART II: Edward Arrives

          I was well settled into the routines of the ward when seven-year-old Edward arrived on the ward one sunny morning with his mother, a tall, anxious blond woman with sharp facial features. She had brought clothes for her son in two brown grocery bags.  When she introduced him to me I noticed that Edward avoided eye contact.   Head bowed, he stared at the floor just in front of his feet.  I assumed he was shy in meeting strangers for the first time, not uncommon among children his age.   I could see he was tall for a seven-year-old and resembled his mother.  She left the ward, explaining that she had to sign some papers in the admissions office, and I showed Edward to his room.  Then I took him on a tour of the ward, which was mostly one large room with a dining area and a lounge area with furniture gathered around a TV screen.
          I noticed that Edward moved slowly and deliberately.  It was as if he had to think about each movement before he began it.  His body movements resembled a character in a slow motion movie and were awkward.   Later, as I entered his room to begin the day, I would find him standing in the middle of the room, nude and not moving.   When I greeted him with “Good Morning, Edward.  How are you this morning?” he would slowly turn his head in my direction but avoid eye contact and say nothing.  Then he began the laboriously slow process of dressing himself, a task that could require 20 minutes and more.   I learned Edward could not tolerate being touched.  If touched accidentally, he would flinch, draw back and would bark “Don’t do that! Do NOT touch me.”  He also objected to anyone, usually another child, entering what he considered to be his space.  
          A few days after he arrived he began identifying his psychologist, nurses, attendants and even children on the ward as automobiles.  His psychologist, a rather conventional looking man, became Dr. Ford Falcon.  One of the nurses, a beefy woman, he named Nurse Mack Truck.  A pretty petite nurse on the ward became Mini Minor.  A handsome, powerfully built psychiatric resident from Columbia became Dr. Chevy Corvette.  His choice of car models for human beings showed remarkable insight into personalities as well as physiques.  The names he gave doctors, nurses, attendants and even some of the children, seemed to fit. 
          But in the first week or so Edward did not give me a name at all.  I was wondering what model of car or truck I would become in Edward’s personal garage.  Then one morning Edward was going through his impossibly slow dressing routine with his back to me, picking up each piece of clothing, inspecting it, and then slowly putting it on.  Suddenly he turned his head but not his body and said in his normal slow, deliberative manner,  

“You are a bear, Mr. Bear.” 

So that is how I became Mr. Bear and how he addressed me and what he called me in the presence of others.  It was progress of sorts.  Rather than identify me as an inanimate object he had conceded that I was a living creature like himself.   
          But not one gifted with speech.  As the days passed, each morning I entered his room, greeted him, and asked how he had slept and how he felt.   And each morning he would turn his head in his peculiar awkward slow motion without making eye contact, and would say,

“Please don’t talk, Mr. Bear.  You know bears can’t talk.”  

          I did not know why my talking bothered Edward but I supposed it was because he was not yet prepared to accept that I was capable of human speech.  Nor did he begin to welcome any physical affection.  He continued to flinch when anyone accidentally touched him and that included me.  But I continued to greet him each morning as I entered his room and continued to talk to him throughout the day.  But I respected his desire not to be touched.
          Edward did not interact with the other children at all.  He was a poor eater and when after a week or so he agreed to sit at the dining table with the other children, he sat as far away from them as he could. One boy tried to befriend him, asking him questions about himself, in the hope he could start a dialogue.  Edward ignored him.   It was the custom to say a brief grace before meals.  Some of the older children would say a prayer to which the others responded with,” amen.”  But Edward did not respond.  Annoyed, one pious little girl who compulsively washed her hands a dozen times each day challenged him.    

“You did not say amen, Edward!  Say amen!” 

Edward did not look at her nor did he say amen.  A fourteen-year- old red headed boy with Tourette's syndrome had punctuated the prayer by repeating, “Shit, shit, shit, shit” which caused the little girl to frown and some of the boys to giggle but Edward did not react at all.  
          Edward was willing to talk to the other children as long as the subject was cars or trucks, but not willing to respond to their questions or carry on a dialogue of any kind. He had an amazing knowledge of automobiles and peopled his world with them.  He drew automobiles and trucks and nothing else incessantly and his drawings were unusually detailed and accurate.
But he always sat apart from the other children and the adult personnel on the ward.  In the evening before bedtime, children’s stories were played on the large TV screen in one corner of the ward.  The children, all in their pajamas, would crawl into the laps of the nurses and attendants for some good night comfort.  But not Edward.  He always sat apart and did not invite or seek any physical affection. 
          One morning at the end of Edward’s first month on the ward I walked into his room and as I began the morning greeting, he turned slowing, looking at the floor in front of me and said, “You are Talking Bear.”  So if Edward could not accept that I was fully human, he had conceded that I had at least one primary quality of human beings.  Speech.  And from that moment I became “Talking Bear.”      
          Edward’s world included unusual fears.  He would sometimes say,
“I do not like this two-piece kitty.”  I had no idea what that meant.  I could think of no story books with two-piece kittens.  And then days later, I heard, 
“I do not like this two piece kitty.  Iowa Kitty is a two piece kitty.” 
          The light dawned.  He meant city, not kitty, and what disturbed him was how the Iowa River divided the city as it flowed through the middle of the university campus.  We sometimes had to cross the bridge over the river on our recreational walks and our twice weekly trips to the university’s natatorium to swim.  At first Edward balked at crossing the bridge above the river.  I finally persuaded him to come with us by picking him up and carrying him on my back, a routine we followed from then on.  Once at the pool he would, again with some persuasion, walk into the shallow end of the pool and stand upright and walk around. He did not go into the deeper water and did not swim.  He insisted that no other children come into the zone he considered was his alone.  If they did so or if a water polo ball landed in “his” zone, he became very upset. 
          The medical staff of the hospital had not settled on a diagnosis for Edward.  At a Grand Rounds attended by all those with an interest in him a psychologist, a short woman with short brown hair and a solid figure, presented an analysis of Edward’s voluminous drawings of cars and trucks.  What I remember from her presentation is the number of penises she found in his drawings but I no longer remember what that finding was intended to illustrate.  A psychiatric resident, an ascetic looking man with rimless glasses, presented his view that Edward’s condition resulted from an imbalance of chemicals.  While there was no final agreement on a diagnosis for Edward, the consensus seemed to be that Edward was suffering from a form of schizophrenia.  No one seemed to have suggestions to help him.  He would continue to be under observation.  I dreaded the thought that Edward could spend years in an institution as had Willie, the boy who had touched my heart the summer before.  
          As the days passed I realized that despite my effort not to do so, I was becoming fond of Edward.  I am not sure why because he did not welcome affection and gave none.  And while it was true I had become his “Talking Bear,” I did not seem to be helping him either. 
          One evening we were all gathered in front of the television for the usual good night cartoon stories, the children in their pajamas.  Edward was sitting apart from everyone else. Suddenly I was surprised to find him climbing into my lap.  He leaned into my body and I gently folded my arms around him.  We sat like that for the rest of the stories.  Later I walked him back to his room.  I turned off his bedside light but we could see each other in the half light from the ward hall.   

“Good night, Edward,” I said.  Happy dreams. Sleep well.”

“Good night, Lewis,” he said, looking up at me and using my proper name for the first time. “Good night, Talking Bear.” 

It’s clear today that Edward was not schizophrenic.  He had Asperger’s Syndrome, a condition first described in l944 by Hans Asperger in Austria. Asperger’s work was probably unknown to many in the American psychiatric community in l959 when Edward was a patient at the hospital in Iowa City.  Asperger’s Syndrome fit Edward’s behavior. This syndrome is similar to autism but children with Asperger’s Syndrome typically function better than do those with other forms of autism.  Their intelligence and language skills are often extraordinary.      





ASPERGER'S; THE MISSED DIAGNOSIS 1


                     ASPERGER'S; THE MISSED DIAGNOSIS  PART ONE
         
I suppose it is true that someone with my history as described in Children of the Manse has deep within him the ghost of the neglected and abused child he once was.  For whatever reason, all my adult life I have found myself especially drawn to children whose struggles bore some resemblance to my own.  The following story is about children I remember from two summers working as a ward attendant in a psychiatric teaching hospital in Iowa some years ago.  
          If your interest is primarily in Asperger’s I suggest you begin with the second part of this story.     
                   
                                                  PART I

Following my first year of graduate theological studies I was required to work in a hospital, a prison, in programs for recovering alcoholics or for unwed mothers. I chose to spend the summer of 1959 in the psychiatric teaching hospital of the University of Iowa. My program had little structure.  I worked as a ward attendant under the same conditions and for the same modest pay as other attendants in the hospital.  I was also required to do some additional reading and to meet every two weeks or so with a short, rotund and mildly cynical hospital psychiatrist and an Episcopal priest of impressive learning from Cedar Rapids who was himself a psychologist before entering the ministry. 
          I quickly realized I had begun one of the most exciting summers of my life.  I adjusted easily to the environment of the hospital, admired the nurses and attendants I worked with…all decked out in medical white… and was fascinated by what I was learning.  The social scene among the nursing students, medical students, and attendants was free and open, so unlike the semi-monastic environment in which I had lived for nine months in the seminary.  One special excitement was a summer romance with a recently divorced, attractive blond nurse. More than once that summer I considered abandoning my studies for the Episcopal priesthood to become a psychologist.                                   
                                        The Hospital               
          The hospital, of dark brick and one story, was built for its function. The west wing was for female patients, the east for males.  The two south wards of each wing were for neurotic patients.  The north wards of each wing were for psychotic patients who were locked behind heavy gray metal doors with tiny thick glass windows that closed with a comforting click.  These patients were closely watched, especially in the bathrooms where they were carefully monitored to thwart suicides.  Occasionally one of the psychotic patients would have to be sequestered, raging, screaming, and threatening violence, in one of two padded rooms near the middle of each ward.   
          The fifth ward was for children who were kept separate from the adult wards of the hospital and had their own adjacent outdoor play enclosure.  I rotated through all five wards over the course of the summer but I most enjoyed the weeks I spent on the children’s ward.  
                             
                                        The Second Summer

          The following year the US economy was in recession and I was having difficulty finding a summer job, necessary if I was to afford the next year of theological studies.  I decided to call Mary, the friendly nurse director of personnel, to ask if I could return to again work as an attendant for the summer.  The salary was enough to cover my expenses and put aside some savings.  The social life was great, though I suspected my summer romance had found a new boyfriend, which turned out to be so.    
          Mary was at first non-committal but called me a few days later. 
“Yes,” she said, “There is a possibility.  We’re sometimes asked to hire athletes on the football and basketball teams as part of their scholarship package.  A few years ago two of the football players roughed up one of the boys on the children’s ward and we decided to ban adult males from the ward.   We would like to explore changing the “no males” policy. We think the children need a positive male image. We were impressed with your work on the children’s ward last summer.  So, yes, if you are willing to spend the summer full time on the children’s ward, we have a position for you. You will be on probation and if for any reason the reintroduction of a male to the ward does not seem to be working out, you will be released immediately.”  So I climbed on a Greyhound bus in Chicago and returned to Iowa City. 
          I had forgotten how hot and humid summer is in Iowa.  The stillness, the absolute immobility of the summer air is stifling.   The river which divides the university and the city seemed almost stagnant without wave or ripple.  At dusk hundreds of bats fluttered through the thick air.  I again donned a white medical jacket, thrusting my arms through the stiffly starched sleeves and struggled with closing the buttons on the left side.  I waited outside Mary’s office for her briefing while she finished a phone call.  I began to recall the most memorable patients from the summer before; the acutely depressed elderly bearded Amish man who recovered quickly after three courses of electro-convulsive therapy treatments; the paranoid dermatologist who, looking out the bathroom window, described for me in detail a helicopter loaded with marines that was coming to rescue him, a fiction real only to him.  I remembered the nearly comatose forty-year-old woman who in youth had suffered a frontal lobotomy, one of early psychology’s dreadful horrors.   And fondly I remembered Ben, the fourteen-year- old boy whose addictive glue sniffing stimulated his fantasies of becoming a major league baseball player. 
          And I most especially remembered nine-year old Willie, who had lived in institutions most of his life and whose blazing eyes could show more hatred than I had ever seen in a human being.  Willie was afraid to love, even to show affection, for fear of being hurt again.  I saw myself in Willie.  I was an abused and neglected child who eventually was placed in an orphanage.  I also feared to love and found it impossible to respond to affection.  When finally adopted at the age of eight, my mother told me that a year passed before I would permit her to hug me and another year before I could return her affection.  When Willie one day surprised me by holding my hand and later giving me tiny awkward half-hugs I wanted to cry.  Those moments are what make working with wounded children so fulfilling.     
          One memory I tried to remove from my mind and could not was that of Joyce, a pretty woman with clear blue eyes, delicate features and soft brown hair.  Joyce weighed less than 100 lbs.  I and another attendant assisted the psychiatric resident and nurse who administered Joyce’s series of electro-shock treatments, three times a week for four weeks.  Joyce had asked to be the first of the eight patients we treated with electro-shock therapy each morning so she wouldn’t see the other patients as they were returned to their beds, pale and seemingly dead. 
          I winced as I recalled how I as one of two attendants on separate sides of her body had gently grasped one of her shoulders and a lower leg as the electric shock hit her tiny body which pitched up in an arc from the gurney, went rigid, and then fell back again.  Her lungs gasped, she turned blue as the convulsions began, at first large and far apart, and then smaller and faster until they were hardly more than twitches.  She did not appear to be breathing.  Her skin was white, bloodless. 
          Mary finished her phone call, walked into the reception room where I had been sitting and brought me back to the present as she began much the same briefing she had given me the summer before.  She singled out a single key from the mass she carried on a large circular ring.  “This is your “B” key, she said.  It will open most doors except for the padded seclusion wards and the medication cabinets.” She reminded me that dating patients was cause for immediate dismissal.  “Neurotics can be charming.  More than one nursing student or attendant has fallen in love with a patient,” she added.  “And remember, you will be on probation.”
          I said I understood, thanked her for hiring me, and soon settled into the regular routines of the children’s ward; the briefing at the beginning of shifts by the duty nurse, and the reading and writing of medical charts.  We did not take the temperatures and pulses of the children daily as we had on the adult wards and only the duty nurse was authorized to distribute medications when those were prescribed. There were, of course, no padded cells in the children’s ward and I was no longer required to assist at electro-convulsive treatments.  Activities on the ward included reading to children, board games, trips to the university’s swimming pool, visits to museums and walks in the neighborhood.  I ate with other attendants and nurses in the cafeteria in the main hospital building across the street and managed to rent a dorm room near the hospital, a single I enjoyed having all to myself.