Autism spectrum/A few impertinent questions/Can the value of scientific knowledge ever justify enrolling people in research projects without their knowledge or consent?
When I returned to the clinic with Tony the following week, both psychologists met us in the waiting room, Dr. Lavalle and Dr. Zircon. There was something different about their attitudes today; they seemed animated by a suppressed excitement. I was not aware of the controversy raging over autism. Nor did I know that proponents of various theories were zealously competing to prove their hypotheses. But long before I ever heard of the term autism, I often sensed doctors seemed to view Tony as a rare, "interesting" case. I sensed it that afternoon. I decided these two psychologists must have finally compared notes with Dr. Berger. They probably now realized "exactly what kind of a child we had here" - whatever kind that was. We walked down to the playroom. Tony remembered where the blocks were kept and began to make an airplane. "Does he spend a lot of time playing with blocks like this?" Dr. Lavalle asked.
"Yes. Some of his creations are elaborate and quite artistic." I had learned principles of artistic design while studying architecture. No one had to teach them to Tony; he seemed to have been born with such knowledge. “Note his use of symmetry!” Dr. Lavalle said to Dr. Zircon. Dr. Zircon didn't respond. “Do you see his use of symmetry?” Dr. Lavalle persisted, apparently excited by Tony’s arrangement of the blocks. “Hmph,” Dr. Zircon grunted, with an uneasy glance toward me. Did he feel such technical matters shouldn't be discussed in front of uninformed laymen such as mothers? “Let's go down to my office and have a little chat,” Dr. Zircon suggested to me.
Tony, busy with the blocks, didn't object to me leaving. I walked down the hall with Dr. Zircon. Damn! Another psychiatric interrogation! Would the psychologist try to persuade me to lie down on a couch? How could I cope with his psychotherapy from such a vulnerable position? Maybe I should just refuse. Thank you, I’d insist, but I prefer to sit in a chair. How did he come up with the bizarre notion that these psychiatric inquisitions could be considered “little chats” anyway? How did I ever get into this ridiculous predicament? Most people live their entire lives without having their sanity or emotional stability questioned. Dr. Zircon opened his office door for me. I glanced furtively around the room. Thank heavens there didn't seem to be anything resembling a couch. I sat uneasily on the edge of a chair and clutched my purse in my lap.
"Now," Dr. Zircon began, as he sat back comfortably and crossed his chubby legs. "Tell me about yourself."
"That corny question again!"
"Well then," he persisted, "what sort of things do you enjoy doing?"
"Yesterday I stopped at a railroad crossing with the children in the car. My daughter asked, 'Mommy, did you ever drive a choo-choo train?' I remembered the night I drove the Nancy Hanks from Atlanta to Savannah, tooting the whistle like mad all the way. That was sort of fun."
The remark was an exaggeration but it wasn't a complete fabrication. Ike had rejoined the army, and I was still working for the architects in Atlanta. I took a train, the Nancy Hanks, to Savannah to be with Ike on weekends. One evening in the club car I met a vice president of the railroad, an elderly gentleman who invited me up into the engine to sit in the driver's seat and pull the whistle a few times. I realized I'd fouled up again - I'd said something flippant. But why should I have to convince this psychologist I was normal? Such a task seemed hopeless, like proving a negative. I looked him in the eye, daring him to make something out of my remark. "What else do you enjoy?" He was trying not to smile, apparently not wishing to encourage levity.
“I garden, play tournament-bridge, and I read a lot. I've always managed to find something to keep busy.” At the moment I probably wasn't portraying a convincing picture of a woman who enjoys life. "What type of things do you not enjoy?" "Oh, cocktail parties, women's luncheons." I could have added, and impudent young psychologists asking impertinent questions - but didn't.
He sat and looked at me a few moment. "Tell me about your childhood," he said.
I stared back at him, shocked. What a nerve! How could anyone sit and so cheerfully display such unmitigated gall? Psychologists apparently felt absolutely no compunction about asking offensive questions! "Tell me about your childhood," he persisted.
I continued to stare at him, but his gaze didn't waver. Psychiatric theory had permeated our society enough that I realized traumatic childhoods were expected to cause children to become abnormal, and I supposed my childhood might be judged as somewhat traumatic.
“My father was an alcoholic” I finally said. “You’d probably consider that an unhappy childhood, but it wasn‘t really. I seem to have a talent for enjoying life and I enjoyed life as a child, in spite of a sometimes hectic home life.”
As a child, I'd felt embarrassed about my father’s drinking, but it had never been much of a secret. Many people in the town where I grew up were undoubtedly aware of Daddy's alcoholism. I was capable of lying. At least I thought I was. I wouldn't consider lying a mortal sin - especially if I thought the truth was no one's business. I just couldn't remember occasions when I felt compelled to do so. Certainly when taken by surprise like that, any ability to conflate the truth evaded me. Later I experimented to see if I could lie. I found I could - if I thought about it ahead, and prepared myself. I might even become proficient with enough practice. However when taken off-guard like that, the truth just seems to automatically pop out of my mouth. Furthermore, at that time I was under the impression that lying to psychologists would be futile; they had scientific methods of uncovering the truth. Scientifically trained psychologists could even detect my subconscious thoughts, things I wasn't even aware of thinking. Couldn’t they?
Dr. Zircon finally seemed to become aware of my anger and changed the subject. "How do you feel about coming to group therapy?" he asked.
"A year would be a long time to sit and listen to the same women's problems."
"Yes, but after you become interested, you'll enjoy it. While you are in the group, Tony will be in the playroom with Dr. Lavalle. Allowing Tony to form a relationship with someone outside the family would be a good idea. That's the only reason for you to attend the group," he emphasized.
I realized it would be nice for Tony to interact with someone outside the family, and I believed the psychologist when he said that was the only reason for me to attend group therapy. Tony ignored people. He wasn't so much unfriendly as uninterested, and his indifference soon discouraged everyone who tried to befriend him. Psychiatry had never interested me. Although I had only a vague understanding of psychoanalysis, from the moment that pediatrician said “tell me about yourself”, I sensed I would not enjoy it. I doubt my self-respect could allow me to relinquish such authority over my thinking to anyone, and certainly not to these young men at this clinic. A suspicion was creeping into my mind that these psychologists might not be the infallible, scientific technicians I’d imagined them to be. However in spite of my growing suspicion of psychotherapy, I was still too much in awe of modern science to deny Tony treatment the medical profession was insisting he must have. Thus I found myself agreeing to join Dr. Zircon’s group.
How could science ever determine what role traumatic childhoods play in neurosis? If psychotherapists encourage patients to remember traumatic experiences, traumatic childhoods are precisely what those patients will obligingly recall. In fact, some therapists not only suggest traumatic childhoods; they seem to demand such memories. And, strange as it appeared to me, some psychiatric patients seem to actually enjoy playing the role of victim. As I've read more about other people's lives, I noticed that people who had an alcoholic parent often manage to accomplish quite a lot as adults. Perhaps I would have even benefited from a moderate dose of neuroses. I might have accomplished a little more if I had taken everything more seriously, instead of sailing through life as if it were all a lark. I suspect that a challenging childhood can stimulate and strengthen - as well as cause damage. Nevertheless, whatever my childhood was judged to be, it seemed to have left me with the conviction that life was a glorious adventure. I was an individual, not a statistic. I'd never had any trouble convincing people I didn't fit the statistical generalization about boys being better than girls at math. Surely after he got to know me, Dr. Zircon would quickly realize I was not traumatized by my childhood, and didn't need "fixing".
I understand the practice of testing scientific theories. It sure beats Freud's bald, undocumented assertions. During the next few years I witnessed efforts to recruit or coerce parents of autistic children into various treatments. Therapists don‘t work for minimum wage, and all those “therapies” were obviously being financed by someone. It seemed apparent that publicly-sponsored research must be paying for much of it. Understandably, scientists might be reluctant to be completely open about research. Allowing parents to make decisions might compromise results. As it was, a few parents from other parts of the country learned about all the autism “treatment” going on in our area and moved here to take advantage of it, making it appear that our area was suffering an autism epidemic.
Medical experiments conducted upon people without permission produced some notorious examples during the first part of the 20th Century. Few people questioned the motives of scientists in those days, but we have since learned of the Tuskegee Study, which continued to "study" untreated black men suffering from syphilis for years after an antibiotic cure had been discovered. This “scientific study” was still going on at the time we were involved with the psychologists. It was recently revealed that scientists once infected unknowing patients with malaria as an experimental treatment of syphilis. One of the most callous experiments I read was a 1939 study in which researchers deliberately mistreated a group of orphan children for the purpose of demonstrating that stuttering is a learned behavior. Someone felt they could add to scientific knowledge by traumatizing children in an orphanage into stuttering! Scientists can choose to only publish those studies that produce the results they are seeking, and discard the others. Drugs can have adverse effects, and Ritalin was one of the drugs commonly prescribed for autism. However most of the psychological treatments of autism that I know of were benign. I doubt Tony, or any child, was ever harmed by it. I hated psychotherapy, but I actually benefited from the awful experience. If nothing else, it would cure me of my timidity. I'm convinced one can benefit from any experience, including traumatic ones, and perhaps the most harrowing experiences are the most valuable learning opportunities. Maybe I even needed something dramatic to penetrate my natural complacency. Conducting research upon people without their knowledge was finally recognized as unethical. However it would be 1974 before a law was finally passed requiring informed consent before including anyone in a research project. I do wish someone would think of a way to evaluate the results of psychotherapy and counseling. Such treatment might still be worthwhile if people found it comforting. Furthermore, in the absence of a cure, psychotherapy might help mentally ill people learn to live with their deficiencies. But surely the public is entitled to know whether or not psychotherapy actually cures anything. The purpose of therapy should be more than just provide employment for therapists.
- The original images may be found on this pdf copy of the book.
Current page: Can the value of scientific knowledge ever justify enrolling people in research projects without their knowledge or consent?
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