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Chapter 17
What if patients wrote case histories about doctors?
In California, state agencies, called Regional Centers, are responsible for
retarded people during their entire lives, providing appropriate services.
Tony didn't need anything at the moment. We were thinking of his future
when we applied for his acceptance by the Golden Gate Regional Center.
We signed a release allowing them to send for his records. A doctor
interviewed Ike and me, and decided a psychiatrist should evaluate Tony.
The psychiatrist observed Tony briefly at school. When I met him in his
office he said,
"Tony's teacher tells me you've written a book about your son. If I could read
it, we might save time evaluating him."
I hesitated. Other doctors had read my manuscript, including most of those
about whom I'd written. I'd even summoned the courage to return to the Child
Guidance Clinic with it one day. Glancing uneasily around that familiar
waiting room, the scene of unpleasant memories, I saw the same assortment
of mothers and children. A psychologist in a white coat was behind the
reception desk arguing with someone on the phone.
That report was just our professional opinion," I overheard him declare
defensively. "We regret you don't find our suggestions helpful.".
I plopped my manuscript down upon the reception counter "I've written a
book about you guys. If this wasn't what happened here, tell me what did," I
said. "Call me when you finish reading it," I added and fled.
They kept my manuscript for a month, but someone finally phoned that they
were finished with it. I returned apprehensively to the clinic, wondering if
anyone might try to dispute my version of what had happened during those
two and a half years. However, a psychologist handed my manuscript back
with a stony, expressionless look on his face.. "We have no comment," he
said.
When Freud first proposed publishing case histories, the medical profession
was horrified, accusing him of violating the confidential doctor patient
relationship. Freud insisted revelation of skeletons in his patients' closets
was quite acceptable so long as he didn't use real names. Psychiatrists had
been publishing case histories ever since. None of the doctors' names in my
book were real. Nevertheless, their reaction to my "case history" confounded
me. Now this psychiatrist who was evaluating Tony for the Regional Center
was asking to read my book. Since he apparently knew I'd written
something,
how could I refuse? A clinic at San Francisco State College had diagnosed
Tony as retarded. He was attending classes for the retarded. I was secretary for
Marin Aid to Retarded Children. Surely psychiatry no longer had any claim upon us.
I took my book to the psychiatrist's office. After reading it, he phoned and said
I needn't come for it. He left the manuscript in our mail box early one morning.
We returned to talk to the doctor at the Regional Center. She said Tony could
not obtain services from the agency. "Your son is not retarded. He's schizophrenic,"
she said.
"Schizophrenic!" I repeated. "How did you make that diagnosis?"
"Retarded children don't have the superior nervous system your son has."
The first day we came to the Regional Center, the doctor had asked Tony to
draw a boy. Tony, always impatient to be done with doctors, quickly drew
a boy with a penis, five fingers on each hand and five toes on each foot,
without lifting the pencil from the paper. The doctor had commented such a
feat was difficult for normal children and indicated an undamaged nervous
system. (I doubt Tony's nervous system is still superior. He has been taught
to print his name, and does so crudely and laboriously.)
"May I talk to the psychiatrist who made the diagnosis?" I asked.
"That won't be necessary," the doctor replied uneasily. "I diagnosed him
myself. We merely asked the psychiatrist to confirm my opinion." She made
it plain she didn't wish to discuss Tony's schizophrenia.
I went home and phoned the psychiatrist. "I understand you believe my son is
schizophrenic," I said. "May I make an appointment to discuss his diagnosis?"
"No," he answered, "That would not accomplish anything."
The psychiatrist had evaluated Tony for a state agency. He was paid by tax
money. Nevertheless I did not argue. I'd learned how helpless I was against
the medical profession. Doctors and government agencies apparently felt
entitled to use such diagnoses however they chose, with no obligation to
explain anything. I remembered the child psychiatrist I'd consulted some
years before, the doctor who advised me to go tell Dr. Dingle "exactly what I
thought of him", the charming psychiatrist who only charged me half-price
for that advice. He had seemed like an intelligent, forthright man. I phoned
him for another appointment.
As I again seated myself in the psychiatrist's big comfortable chair and
glanced through the plate glass window at the small-boat harbor, I explained
I'd consulted him several years before. This time I didn't want to discuss my
child, I said, I wished to inquire about the general subjects of autism and
childhood schizophrenia.
"Autism is one of my specialties," he said.
Then I guess you've read Dr. Bernard Rimland's book, Early Infantile Autism?"
"Well, no," he answered.
I was taken aback. Dr. Rimland had an autistic son, and was one the founders
of the National Society for Autistic Children. His book had questioned
whether maternal rejection could cause autism, but it was the only scholarly,
factual book I'd found in this country on the subject. It had won a scientific
award. I couldn't imagine why anyone concerned with autism hadn't read it.
I had sent to England for books and asked if the psychiatrist had read those.
He had not.
Surely a psychiatrist claiming a specialty in autism must have read something
on the subject. I asked if he'd read publications I had been unable to locate.
He mentioned a scientific paper written a decade before and offered to obtain
a copy for me.
"Do you still believe children become abnormal because of something in
their environment?" I asked.
He smiled and shook his head.
"No, many of my views on child psychiatry have changed in the past few years."
Someone once said: "Obsolete ideas don't fade away; their proponents just
die off." In the interest of stability, nature seemed to have made flexibility a
trait of the young. A psychiatrist who could discard beliefs to which he had
devoted much of his life might be the reasonable, open minded doctor for
whom I'd been searching. If only I could persuade him to talk to me!
I told
him I'd written a book about Tony, adding I'd described my consultation
with
him some years earlier.
"Have you!"
"Would you like to read it?"
"I certainly would," he answered. "I'll call you when I finish," he promised,
as he took the manuscript and began leafing through it with interest. My
naturally optimistic nature surged. Rational discussion seemed so simple and
easy. To my knowledge, this psychiatrist was not part of any government
clinic or public agency. (I was mistaken about him not being a part of a
public agency. He was on the board of directors of the nursery school where
I was told Tony could attend, only if he were under the care of a psychiatrist.
The psychiatrist who told the Regional Center Tony was schizophrenic, and
then refused to discuss his diagnosis, was on the same board of directors.
However I didn't learn any of this until many years later.)
A month passed before the psychiatrist phoned me to return for my manuscript.
"Just knock on my inner office door if I'm busy," he said. Arriving at the
appointed hour, excited with anticipation, I knocked. A muffled "just a moment"
sounded from within. There was a chair by the door, and I sat down. Presently
the door opened a few inches, and I watched as the psychiatrist's head and one
arm with my manuscript appeared.
"Well, er--ah, thank you," he stammered, handing me the envelope. His head
and arm disappeared and the door snapped closed.
Unable to move, I stared at the door. Apparently the psychiatrist had changed
his mind about the scientific paper he had promised. Why? There
was
nothing unflattering about him in my book! The effort to face myself at
the
typewriter had sometimes been painful. Anyone who writes must be
willing
to appear naked. Vanities and unintentional dishonesties are often
revealed
for the first time when a writer sees them on paper. One difficult
task had
been to separate what I actually said to doctors from what I later
wished I
had said. Nevertheless I was confident I had remembered my
conversation
with this psychiatrist accurately enough. I sat staring at the
closed door,
again immobilized by frustration as I slammed against the mysterious,
invisible wall which prevented doctors from talking to me. After so many
disappointments, I must not allow another one to evoke such painful feelings,
I told myself. Finally, I got up from the chair and went home to cope with my
anger at yet another doctor. The bill the psychiatrist sent me that time was
full price.
Since doctors refused to talk to me, I read everything I could find about
atypical children. Convinced government research was responsible for
doctors' strange behavior, I wondered if autism might be discussed more
rationally in other countries. I sent for scientific papers in German and asked
a German friend to make sure I translated them correctly. Although I found
plenty of esoteric discussion about damaged psyches, published facts about
autism or childhood schizophrenia in any language were meager and
unenlightening. Several popular books on autism seemed preposterous. One
widely read account was made into a movie. The author claimed to have
cured his autistic son by some vague form of "love" and constant attention.
His method of treatment proposed that a therapist non-judgmentally enter the
child's private world of autism. Then the autistic child should be invited,
politely, to come out and join the real world.
How could the medical profession take such nonsense seriously?
Bruno Bettelheim, a columnist for Ladies Home Journal, was notorious
among parents of autistic children for claiming maternal rejection caused
austim. He was one of the first to expound the theory that a "real person"
had been hiding in the body of each autistic child, afraid to come out According
to Bettelheim, in the first weeks of life, during bonding, a baby might decide
mother was rejecting it. "Ah-ha," the tiny infant might cleverly reason, "Mother
is out to exterminate me! But if I don't exist mother will be unable to destroy
me." Bettelheim speculated this was the moment when a baby decides to become
autistic.
Faced with such preposterous theories, my faith in the pronouncements of
"scientific authorities" continued to deteriorate. Many of the people
who were taking such theories seriously were not ignorant. The medical
profession was, supposedly, the most critical, scientifically educated segment
of our society, and most of us assumed they were not gullible.
I often tried to expunge from my mind the belief that we were victims of
some secret research progress. Believing only what one wishes must be a
comforting ability. Nevertheless, I'd wake up one morning and find
the belief had taken over my head like some big unwelcome monster.
I remembed that psychoanalysis was launched by a secret, international
conspiracy. After the first decade of this century, Freud and his little group
of fellow psychoanalysts in Vienna were still regarded with scorn and derision
by most of the world. Jung and Adler had been excommunicated from "The
Movement" for suggesting neurosis and mental illness might be caused by
something other than infantile sex and Oedipus complexes. Such treachery
caused well documented emotional trauma among faithful Freudian analysts.
Entire books have been written describing the emotional trauma Freud
suffered at Jung's defection. In 1912 Freud's disciples organized an
international committee to be on guard against further heresies. Freud
insisted this committee be kept secret; knowledge of its existence might
further damage their already unsavory public image. For the next ten
years they were vigilant in stamping out deviant ideas about psychoanalysis.
Finally Freudian analysis was imposed upon Western society (mostly in the US)
as science, and the committee could be publicly acknowledged.
I did finally emerge from an encounter with psychiatry feeling triumphant
rather than defeated. It occurred some years later and in, of all places,
Freud's hometown, Vienna.
After my husband died, and when Tony began attending a camp for retarded
children every summer, I discovered a fascinating way to travel. I would go to a
foreign country and enroll in a language school. I had spent a wonderful
summer with five other women, living in a dormitory at the Cite
Universitaire in Paris, and studying French at the Sorbonne.
A couple of
summers later I went alone to Vienna and studied German at the
Goethe
Institute. My classmates were European businessmen,
diplomats, aspiring
young opera singers, bright young priests, college
professors, and students
from all over the world. The language classes were
stimulating, but I was
even more fascinated by my fellow students. Many of
their lives were quite
different from mine, and I loved talking to people with
diverse beliefs and
attitudes. The Goethe Institute didn't offer
much organized social life, so I
appointed myself an unofficial social director
that summer and arranged trips
on the Danube and to the Vienna Woods. We
spent evenings in the wine
gardens of Grinzing. The young people
appreciated the outings I organized,
and we became good friends.
One evening we missed the last streetcar from Grinzing and had to walk back
to Vienna. The party included a young Swedish couple with a baby in a
stroller. It as a lovely summer night, and the conversation was interesting.
We arrived back in Vienna in pre-dawn hours, the baby sleeping soundly.
Vienna was a quiet, old fashioned city. Teenage boys on streetcars even got
up and gave their seat to a lady. Strangers spoke to each other on the street.
"Gruss Gott," was the greeting I returned as I approached my hotel
along the
dark, almost deserted sidewalk. Being out alone in a large city at
such a late
hour, without fear, reminded me of San Francisco when I was
young. This
enchanting city was where psychiatry began. This was where
Freud and his
disciples dreamed up all those weird theories which had
plagued me for two
decades.
I was in an advanced language class. Viennese professionals lectured on
various topics, which we discussed in German. Some of the subjects were
controversial and the discussions lively. One such lecturer had advanced
degrees in philosophy and psychology, and touched upon the subject of child
psychiatry and maternal rejection.
"How can you define maternal rejection?" I challenged him, my German
word order becoming somewhat tangled in my indignation. "How can any
psychologist presume to judge whether a mother loves her child!"
The polite, mild-spoken Austrian lecturer stared at me in consternation. I
apologized for my outburst, and he asked if he might continue. Going on to
name illnesses caused by maternal rejection, he placed autism at the
top of
the list. I was silent, but the expression on my face must have
been
explosive.
I visited Hungary alone the weekend after that incident. As I explored the twin
cities of Buda and Pest, connected by bridges across the Danube, my mind kept
returning to the lecturer in Vienna. In the United States hardly anyone except
Bruno Bettelheim still believed maternal rejection caused autism. But in Vienna,
the very cradle of psychiatry, such an outdated view persisted.
It was a cold, drizzly weekend. Buying some paper, I spent Sunday afternoon
in a deserted, outdoor cafe by the silent, grey Danube. Oblivious to the
weather, I sat writing my own lecture on autism, in German. Many facts
were in my head. (I brazenly made up one.) I told how autism was first
defined by Dr. Leo Kanner in 1945. After the election of John Kennedy, who
had a retarded sister, massive research efforts were undertaken on atypical
children. Summarizing the literature, I described attempts to treat autism with
psychiatry, and told of the parents' rebellion against this treatment.
"Traditional theories have been disproved by soon-to-be-released research
results," I stated. (This was the part I made up.)
Returning to Vienna by train, I shared a compartment with some young
Austrians. They allowed me to practice my lecture, showing a lively interest
in the subject and correcting my German. Monday morning the Austrian
lecturer brought a colleague with him to class, another psychologist.
Good, I thought. If he was seeking moral support in case I disrupted the class
again, I would enlighten them both! I asked if I might give a short talk, for
dissertations by students were part of the instruction. I had managed to
overcome much of my shyness, and could talk to strangers informally.
However, my knees would have ordinarily been shaking, and my voice
quivering with fear at the prospect of standing up and speaking before an
audience, even an audience of friends. Nevertheless, on this particular day, I
forgot all stage fright. My report was magnificent, and my German flawless.
Everyone in the room appeared convinced, including the two psychologists,
and eagerly questioned me on the subject I had so confidently presented.
I sure fixed you, Freud, you old rascal, I thought gleefully, and in your own
home town! For that one brief moment I didn't feel so isolated with my
bothersome, research-conspiracy theory.