Autism spectrum/A few impertinent questions/Would it even be possible to conduct a scientific study to determine whether psychological treatments are effective?

Question 21 A clinic at San Francisco State College, funded by the State Department of Education, was frankly and openly involved in research. I knew several parents with “neurologically handicapped” children who had been diagnosed there. The doctors were reputedly not psychiatry oriented. The clinic was headed by a neurologist, and they were said to look for physical causes of abnormal development. I consulted a civilian pediatrician and asked him to arrange an evaluation for Tony. The waiting list was long, and Tony was nearly ten when we went for his examination. A social worker interviewed me.

"What did the Child Guidance Clinic diagnose your son?" he asked when I explained that Tony had been treated there for over two years.

"No one ever told us," I answered.

"Do you mean six years after first taking your little boy to a doctor, you still don't know his diagnosis?"

I shook my head, grateful someone finally agreed our experience seemed outrageous.

"When we finish examining your child, you and your husband will meet with all the specialists examining Tony. Each will report their findings," he promised. "We'll answer all your questions and definitely give you a diagnosis."

His sincerity and concern seemed obvious. Had we finally found doctors we could trust? My naturally optimistic nature surged, and I forgot the bewilderment and heartbreak I'd felt after each doctor had been devious. Maybe this time was finally going to be different.

For the first time Tony was thoroughly examined. Doctors, speech and hearing specialists, teachers and psychologists tested him for four days. I watched some of the tests. Tony could work jigsaw puzzles and fit things together. He completed one test labeled “space relations” in an instant - even before the tester told him what to do. He had no comprehension of ones requiring him to distinguish articles found in hardware stores from those found in clothing stores. He was kept busy, and didn't seem to get into any mischief during the week. He lowered the flag out in front one day, but their fire-alarms, something that always fascinated Tony, were apparently where children couldn‘t reach them. The physical examination was not extensive. Doctors still lacked technology to reveal much of what went on in the brain. Tony was examined by a neurologist. In order to determine dominance, the neurologist suggested Tony kick him. Most children might be a little shy about kicking an adult, but not Tony. He enthusiastically hauled off and delivered a whack on the doctor's shin. The neurologist winced and rubbed his leg, apparently not expecting such enthusiasm. Tony was left-handed, but right-footed.

We drove to the clinic on the fifth and final day. On the way I stopped by the Child Guidance Clinic at the Army hospital to pick up Tony's records, which had been requested but never sent. Then I stopped the car in Golden Gate Park. Prying the staples out of the folder, I spent a few minutes reading it. I read the letter from the doctor at the Child Guidance Clinic stating their treatment had been curing Tony of his “illness”, but he regressed whenever he was returned to the family situation, “and when this became apparent to the mother she suddenly withdrew the child from treatment.” It was a terrible accusation, and obviously not true. I didn’t “withdraw Tony from treatment”, until he wasn’t getting any. Dr. Lavalle was sending him home every week for refusing to go into the playroom. Should I remove the letter from Tony's file, I wondered. No, I decided, it was a ridiculous allegation. The psychologists were angered by my rejection of their therapy, and this report only revealed their petty vindictiveness. The social worker’s assurance that they would give us a diagnosis had been emphatic. I hoped all these specialists and scientists, associated with a university, wouldn't have wasted four and a half days examining him if they were going to take the word of some Army psychologists who saw him four years ago. I didn't know how to defend myself against the psychologists' declaration of my emotional pathology, but removing something from this file would only show their same sort of petty dishonesty.

"Let's go! Let's go!" Tony urged. He was enjoying the tests and was eager to get to the clinic. I closed the file, restarted the car, and drove on for the final day of his evaluation.

Before our concluding conference that morning, I was scheduled for an appointment with a psychiatrist, a man who hadn't appeared to be an important member of the examining team. He seemed to be the only psychiatrist at this clinic, and today was the first day he'd even been here. Only fifteen minutes was allotted for the appointment, and I assumed it was probably an unimportant, routine interview. The psychiatrist turned out to be a small, dark haired man who appeared to lack enthusiasm for his job. His woeful brown eyes suggested a permanent expression of melancholy.

"I see from Tony's records that a child guidance clinic already diagnosed him," he said.

"Tony was seen there," I answered, "but they never told us their diagnosis."

"Autistic is what they say here in their report."

"I remember a psychologist mentioning that term, but he didn't explain what it means."

"Would you consider taking Tony to Langley Porter Psychiatric Clinic?" he asked after a moment of gloomy silence.

We parents of defective children often managed to seek each other out and compare our miserable experiences. I’d talked with parents whose “disturbed” children were treated at Langley Porter. The treatment consisted of psychotherapy for the mother. "No. I'm sorry. I don't believe in that type of treatment," I said. The psychiatrist frowned. "I don't really believe in psychotherapy as a treatment for any illness," I added apologetically.

I suspected psychiatrists might be annoyed by a suggestion that psychotherapy couldn't cure anything. I didn't feel comfortable challenging a doctor, and I did my best to appear contrite rather than assertive. I’d read that a growing number of doctors were convinced mental illness has physical causes. Surely I was also entitled to such a belief.

The psychiatrist sat staring despondently at the floor. He waved his hand, indicating I could leave. I returned to the waiting room. In a few minutes the social worker came out and motioned me back in to his office. This was the man who had promised all our questions would be answered today.

"So far as you are concerned this is the first time anyone has actually examined Tony, isn't it?"

I'd already told him that, but he apparently wanted me to repeat it, “just for the record“. He seemed upset. Were he and the psychiatrist having some disagreement about Tony?

"Yes, this is the first time anyone has given him a physical examination," I said. I returned uneasily to the waiting room. Had something gone wrong? Surely after all these years we didn't still "belong" to psychologists!

The psychiatrist sent for me again. "Have you ever noticed Tony sit and rock back and forth, and stare into space, unaware of his surroundings?" he asked.

"No, the most abnormal appearing thing Tony does is demand we repeat things."

"He makes you repeat words or phrases with the same tone of voice?"

"Yes. And sometimes if we touch him, he insists that we touch him again in the same spot."

Still looking glum, the psychiatrist dismissed me again. I returned to the waiting room. All these professionals had seemed straightforward and candid all week. Now with the arrival of the psychiatrist, things were getting strange. "Oh please, please don't have this evaluation turn into another disaster!" I kept repeating to myself.

I felt too nervous to sit and talk to the other mothers in the waiting room. Their children only had problems in school, and doctors usually diagnosed them as having a learning disability. Tony didn't seem to have much in common with them. I went out to walk up and down the hall in an attempt to work off my growing apprehension. As I passed the social worker's office, he stuck his head out. He furtively motioned me in and closed the door. He didn't ask me to sit down.

“You are going to listen to our diagnosis today - pardon me, I mean our opinion - and then do what you think is best for Tony, aren't you?” he asked. He stood uneasy by the door waiting for my answer.

"That's what we've always done."

"Yes," he agreed distractedly, as he cautiously opened the door for me to leave.

As the door closed behind me, any hopes to which I had been clinging plummeted. This examination was turning out to be as bewildering as all the others. The arrival of the psychiatrist, and Tony’s records from the Army clinic, must have somehow revealed our participation in the research project. They were evidently planning to tell us something with which the social worker seemed to disagree. Most medical doctors who felt compelled to be devious during those years appeared uncomfortable at being less than candid. Psychologists, on the other hand, rarely appeared embarrassed when trying to maneuver patients, apparently considering manipulation of people to be one of their skills. This social worker was the exception, and I remember with gratitude he at least seemed to feel badly, and tried to warn me about whatever they were doing.

I returned and sat woodenly in the waiting room with growing dread and fear. Tony and I had been coming to the clinic alone all week, but Ike had arranged to join us from work for our final conference. By the time he arrived, I’d become so apprehensive that my insides felt like they were made of lead. The somber looks on the faces of the three doctors, who were seated behind a long table up on a stage, confirmed my dread. The dozen-or-so people who had examined Tony during the week were not there to "answer all our questions", as the social worker had promised. Only the psychiatrist, the social worker and the neurologist in charge of the clinic looked down at us from behind the table. To my surprise, the pediatrician from Marin County who had arranged the evaluation was also there. He sat off to one side and didn't say anything. Ike and I sat down in the front row of empty chairs. The silence felt oppressive. The psychiatrist began to speak in a bleak tone.

“We're sorry to tell you your child is just severely retarded - not educable…” He dropped Tony's records on the table in a gesture of hopelessness. “Eventual institutionalization is his only prospect. . . .He's not autistic, as I first thought…” The psychologist kept hesitating as though expecting us to argue. He hadn’t even examined Tony. If he thought Tony was autistic an hour ago, how could he now be so certain of another diagnosis without examining him? “Or if your son is emotionally disturbed,” the psychiatrist continued despondently, “the condition has already gone so long without treatment that the illness is probably now irreversible…”

“I guess I've begun to suspect retardation," Ike said.

"We believe public institutions are better than private ones. You people are not as young as you might be.  There are advantages to making your child a ward of the state."

I believe it was the neurologist who said those words. At the time, I was so shocked by their urging us to institutionalize Tony that nothing but the words themselves became engraved upon my consciousness. Whoever uttered them, the other doctors in the room appeared to acquiesce by their silence. I sat there, immobilized, trying not to feel anything. I was determined not to fall apart, struggling not to cry. I couldn't think of a question to ask; my mind was paralyzed again. I should think of a question, I kept telling myself. But my brain refused to cooperate. The doctors were watching us gravely. Apparently our conference was over.

Ike and I got up and left. The social worker had remained silent throughout the conference, with that dour expression on his face. A few days later the neurologist would send us a letter, urging drug treatment, and offering a choice of several: Dexedrine, Librium, Valium, Ritalin. They didn't care which we chose – just so Tony participated in some experimental drug treatment. At the time I doubted if any of those drugs cure retardation, and I'm still skeptical. I no longer trusted the doctors who were promoting such medication, and we chose not to participate. Maybe I can understand such determination by the psychiatrists to keep us in their research. The concept persisted that autistic children sometimes "recover" – although, of the thousands of children diagnosed autistic, Temple Grandin seems to be a rare example of such recovery. However people sometimes diagnose famous scientists, such as Einstein, as having been autistic as a child. Tony was so quick and responsive, and so bright appearing. If any autistic children recovered, it seemed like he might surely be one of them.

Those doctors had actually urged us to institutionalize our child.

The thought of Tony in an institution devastated me. Tony loved to eat. Sometimes he could consume a pound of hot dogs at one meal. Pizza and spaghetti were other favorites, and he would devour leftovers the next morning for breakfast. And cookies - no one in a public institution would bake cookies for Tony.

One night recently he had called from his bedroom, "Mommy, bwing you toof pick!"

Tony confused pronouns. Fortunately it isn't necessary to clarify pronouns for normal children. Anyone who attempts to explain "you" really means me, and "I" means you, will soon discover how entangled such explanations become. Gestures only add confusion. By whatever means young children learn to use pronouns, it is not by having them explained. As adults we can't even remember how we managed to learn their proper use - and we did it without being aware that rules of grammar even exist. Tony was obviously deficient in that mysterious ability.

I got out of bed and took Tony a tooth pick. But Tony didn't want it for his teeth. He was lying in bed with a dish of olives on his chest and a self-satisfied sparkle in his eyes. He wanted the tooth pick with which to eat his olives. The rest of the family came in and laughed at him. In spite of the problems he caused, we all enjoyed Tony. He was always laughing and teasing, and the children's friends thought he was "neat". He was like a three year old, a delightful, independent, imaginative, mischievous little three year old. I remembered how quiet and lonely the house had seemed while Tony was in the hospital having his teeth fixed. Tony's independence didn't mean that he didn't love us. He would be frightened and unhappy in an institution among strangers.

No one could force us to put Tony in an institution, I finally reminded myself. Perhaps we should have sued someone. However our generation did not expect financial compensation for every personal misfortune, and in those days, even lawyers probably agreed that pursuit of scientific research justified any tactics. I felt such resentment that I was unable to discuss doctors without bursting into tears. We had neither energy nor money for lawsuits. The law had not yet been passed requiring parents' informed consent before involving their children in research, and social scientists were still confident that their wondrous, twentieth-century, psychoanalytical technology could eventually remake all of humanity into similar, successful, untroubled, perennially contented, useful citizens. At that time most professionals seemed to assume such a goal justified coercion.



I never found any published results of all that research on autistic children. I did find description of a research project in one of the many psychology books I read. In 1935, a massive effort was undertaken to prove crime can be prevented. It was called the Cambridge-Somerville Youth Study. Boys who had been in trouble, and considered pre-delinquent, were referred to the project by welfare agencies, police, churches and schools. To avoid stigmatizing the group, an equal number of untroubled boys were included. The boys, an average age of nine, were divided into pairs. Each pair was equated, as nearly as possible, as to health, intelligence, emotional adjustment, economic class, home atmosphere, neighborhood and delinquency prognosis. A substantial number of families dropped out of the project (could it be that, once they experienced a sample of it, some parents failed to appreciate all that psychiatric “help”?). The study continued with 325 matched sets. The flip of a coin determined which boy of each pair would be treated, and which would go into the control group. The families of those in the control group were interviewed, but otherwise left to the resources of the community. The boys in the treatment group received regular attention from doctors, psychiatrists, psychologists and tutors, and constant guidance from their own personal social worker.

The project ended in 1945 when the boys were in their middle teens. Twenty and thirty-year follow up studies indicate all that treatment had very little effect. Actually, the treated boys fared slightly worse than those who were left alone. The treated group committed a few more crimes, became alcoholic slightly more often, had more mental illness and were a little more dissatisfied with their lives.

The follow-up was conducted long after the treatment had ended, and I'm sure it was a disappointment and surprise to everyone. Probably the most important thing they learned was to never again attempt such a study. Psychologists seem to have realized that it is best not to try to seek a scientific evaluation of their treatments. And maybe such an evaluation really is impossible. Normal, self-confident people might quickly resent such psychological intrusion, and the people most willing to submit might be the individuals with the most problematic futures. If Tony was ever involved in such a study, it was massive. Yet no information about such a project was ever published. Psychiatry no longer believes “maternal rejection” causes autism, and psychotherapy is rarely used as a medical treatment. However autistic children are still subjected to a variety of “treatments”. It would be wonderful if someone could figure out a way to determine whether or not they actually accomplished anything.