Autism spectrum/A few impertinent questions/Are living creatures constantly evolving as they strive to grow and adapt?

Or must evolutionary adaptations passively wait around for a random mutation to accidentally pop up in someone's genome? Question 18 We took Tony for his evaluation at the March-of-Dimes clinic. Specialists observed Tony, and a psychiatric social worker interviewed Ike and me. Later, I would again meet this very same social worker when applying for Tony’s admittance to a school for atypical children. I eventually concluded that he was part of a research project, and one of his duties was to ensure that any child diagnosed “disturbed” didn't acquire another diagnosis, and thus allow the parents to escape from their psychiatric treatment. However at that time it would have never occurred to us that he might be anything more than he appeared to be - a participant in this diagnostic team - and we answered all his questions to be best of our ability. At the end of the day the pediatrician in charge of the clinic spoke with us.

"It may take many more tests, and several more days here at the clinic, to diagnose your son," she told us. "What did the Army clinic suggest?"

"They never really mentioned anything specific," Ike answered

"I think I’ve met the psychiatrist in charge at Letterman. I'll give him a call." She asked us to sign a release, allowing her to send for Tony's records from the Child Guidance Clinic.

This pediatrician had expressed skepticism about psychiatry, claiming Freud had been misinterpreted. Surely she had enough common sense not to be influenced by whatever the psychologists might say about us. In any case, we felt we had no choice but to sign the release. However in a few days the pediatrician phoned and asked us to return - not to the March-of-Dimes clinic for more tests, but to her office where we'd first spoken to her. She was nervously looking through Tony's records when we arrived.

"The government is doing more every day for the retarded," she declared. "In a few years we'll have some kind of guardianship for these children. The way things are now, the children grow up and commit some crime for which they aren't really responsible.  Then the state demands they be sent to the gas chamber.  It's a ridiculous system!"

What was she implying? Death in the gas chamber was a shocking possibility for a doctor to mention to the parents of any five-year-old child. The remark seemed out of character for such an obviously intelligent, compassionate woman, and I even sensed her own unease with the appalling words. Did she feel obligated to frighten us for some strange reason?

"Is Tony mentally retarded?" I asked, trying to ignore her alarming statement.

“What does that term mean?” the doctor countered. “Recently I spoke before a group of parents. Most of them thought mental retardation just means Down syndrome. Oh, your child is not mentally defective. We can tell that by looking.”

During our first appointment she had felt unable to determine retardation by looking. She said many tests would be required to determine Tony's diagnosis. What had happened to change her mind? She had seemed so reasonable and candid before. Did Col. Mann, or someone at the Child Guidance Clinic, tell her something terrible about us that changed her attitude?

"I guess you don't know Tony's diagnosis," I said, struggling with a feeling of wrenching disappointment.

"No. He could be emotionally disturbed," she said. "I urge you to continue psychiatric treatment." During our first appointment, she hadn't believed emotional problems could cause retarded development. As she watched me fight back tears, her grim expression seemed to melt a little, and she added sympathetically, "It could be in his genes. Or his brain.  We know so little about the human brain."

"What about childhood schizophrenia?" I asked.

"Who knows why some people break down under conditions others survive?" She turned impatiently to Ike. "You've been through the war, Sergeant. You must have seen men break down under pressure. You must realize we don't know."

"Is Tony schizophrenic?" I asked again. The pediatrician hesitated. Again I caught a look of sympathy in her face. "Pseudo schizophrenia, that's what I call it," she finally said apologetically.

"That term autism--"

"Oh that doesn't mean anything," the doctor said hastily. "Just that some children relate to people differently."

"Is Tony brain damaged?" I asked. This same pediatrician had told the mother I spoke to on the phone her little boy, Eric, was autistic with minimal brain damage.

"If you ask a neurologist, he'll say these children are all brain damaged. If you ask a psychiatrist, he'll say they are emotionally disturbed." Then she muttered almost to herself, "Late developers, that's what I call them."

I sat, numbed, and held Tony on my lap. The doctor talked some more to Ike, but I sank into a silent, dazed defeat. Colonel Mann had suggested other doctors might refuse to examine Tony when they learned the Child Guidance Clinic had treated us for two years. I had considered his suggestion ridiculous, but apparently he was right. The pediatrician's attitude was different from our first appointment. She was now acting as though the psychologists did exert some mysterious ownership over us. For some reason she was refusing to complete Tony's evaluation at the March-of-Dimes Clinic. If the psychologist told her we rejected our child, did she just accept the indictment without question? Or was the child-guidance clinic involved in some research project? I could understand how some doctors might regard research more important than individual patients. In any case, this doctor obviously wasn't going to discuss any research project with us.



I’ve often thought about one thing the pediatrician said - that autism just means some children relate to people differently. She seemed to understand what most doctors now, fifty years later, are just beginning to realize - that the mental disabilities of children called autistic stem from a variety of causes. Autism is mostly defined by behaviors, and it is not a specific illness. Autistic personalities can be associated with all sorts of disabilities, such as Rett syndrome, fragile X defect, Down syndrome, allergies and numerous gastro intestinal deficiencies. I doubt any of those were the cause of Tony’s retardation. He seemed to have a superior nervous system, and he could eat anything. The main characteristic of an autistic personality seems to be a lack of social skills, an inability to effortlessly absorb the culture, language and attitudes of people around them. Tony never imitated anyone. People of normal intelligence can also have autistic personalities, and Tony's personality seemed to be an exaggerated family trait. Many of his relatives have been a bit socially inept.



The next day when I took Tony for his play therapy, I was still suffering a bleak, heavy feeling of despair. We seemed so helpless against a united, all-powerful medical profession. It had been a couple of weeks since I ran off and left Colonel Mann standing in the middle of the waiting room. He hadn't tried to speak to me again. Since then we nodded warily to each other whenever we happened to meet around the clinic. On this particular day, however, as I was getting Tony, I glanced up and saw Colonel Mann again come out of his office. He started toward me with that big smile plastered all over his face.

What was he up to now? Why was he choosing this dreadful day to try to talk to me? Was he aware that the pediatrician at the March-of-Dimes clinic had dismissed us the day before with her appalling words about death in a gas chamber? Had she assured the psychologist over the phone of her cooperation? In frozen panic I watched Col. Mann advance toward me. I've read of the “fight or flight” response, and I admit that mine is seriously off balance - all “flight” and practically no “fight”. Oh, I might occasionally manage a confrontation if cornered, but I instinctively choose “flight”. My reaction may have been painful for Col. Mann. Therapists probably choose their profession because they want to help people, and the horror and revulsion the psychologist read on my face probably didn't indicate much appreciation of his help. Nevertheless my “flight” instinct took over before he crossed the waiting room, and I managed to recover from my paralysis. I grabbed Tony by the hand and yanked him out the door with me, making another escape.

Colonel Mann didn't try to catch me again. He phoned Ike's office and asked him to come to the clinic for a meeting. Dr. Lavalle was in the office with Colonel Mann. They made it clear to Ike that they had no intention of continuing to see Tony every week unless they also had an opportunity to “help” his mother. As Dr. Zircon had done the year before, Colonel Mann was transferring to another hospital. Ike mentioned that I sometimes complained that Dr. Lavalle, the only psychologist who spent time with Tony, had never spoken to us. Ike suggested that I might be willing to talk to him.

“Col. Mann seemed upset at the meeting,” Ike commented later when he told me about it, “At one point the colonel slammed his hat on his head and stalked indignantly out of the room. Then after a few moments, he returned in embarrassed confusion to remove his white coat and put on his Army uniform jacket, before making another indignant exit.”  Knowing how I felt about the psychologist, Ike apparently thought I might have relished Col. Mann's disarray.

“We do seem to have an even more disastrous effect upon psychologists than they have on us,” I commented dejectedly to Ike. I certainly didn't enjoy being around people who believed I rejected my children, and the psychologist’s good intentions didn’t make it any less uncomfortable. So far, both psychologists who tried to administer therapy to me had transferred away from the hospital. Dr. Lavalle was still spending an hour every week with Tony, and since we hadn't found any other medical help, we felt we had no choice but to continue at the Child Guidance Clinic. Tony's psychologist had always seemed pleasant, and I was still naively confident I might convince psychologists I didn't need any psychiatric treatment. I agreed to talk to Dr. Lavalle.