The dark psychosomatic history of autism

In this blog post, we look at the dark psychosomatic history of autism. Shortly after the new diagnosis was introduced in 1943, parents of autistic children were blamed for causing the condition. The prominent child psychiatrist Leo Kanner wrote that they “lacked the warmth which the babies needed.” He noted a “mechanization of human relationships”  in the family and said that the children were “kept neatly in a refrigerator which didn’t defrost.” His metaphor led to the concept of the ‘refrigerator mother’: a mother believed to have raised her child with so little empathy, warmth, and affection that it developed autism. 

The controversial figure Bruno Bettelheim took it one step further by stating “that the precipitating factor in infantile autism is the parent’s wish that his child should not exist.” Bettelheim appeared on popular tv-shows comparing the behavior of mothers of autistic children to the terror of prison guards in Nazi concentration camps. 

Luckily, parents of children with autism organized and fought back to dispel these harmful myths. One of them, a psychologist named Bernard Rimland, carefully weighted each argument for psychogenic causation and each argument for biological causation to conclude that the former didn’t make much sense…

Niko Tinbergen

In 1973, the Dutch researcher Niko Tinbergen won the Nobel prize for his pioneering work on ethology, the scientific study of animal behavior. In his acceptance speech, published in the prestigious journal Science, Tinbergen said that he now wanted to devote his expertise to make a lasting contribution to human welfare. Together with his wife Jeanette he would dedicate the last years of his life to the study of autism.

Tinbergen earned the Nobel prize by carefully observing animal behavior and interpreting it as an adaptive response to environmental stressors. He and his wife believed that this method could also be used to understand the behavior of autistic children. In his acceptance speech, Tinbergen argued “that many autists are potentially normal children, whose affiliation and subsequent socialization processes have gone wrong in one way or another; and second, this can often be traced back to something in the early environment – on occasion a frightening accident, but most often something in the behavior of the parents, in particular the mother.”

The timing for such a statement could have hardly been worse. For many years researchers and psychologists had controversially blamed mothers for the autistic behavior of their children without sound evidence. Parents organized and fought back hard to debunk these myths. At the time of Tinbergen’s acceptance speech, the research field had finally moved on to focus on more promising leads such as cognitive and perceptual differences in autism. Two years earlier, Eric Shopler, one of the most influential autism researchers, wrote an article titled ‘Parents of psychotic children as scapegoats’ in which he stated: 

“Over the past several decades the most prevalent views of autism and childhood psychosis have considered the parents to be the primary cause of the child’s disturbance. Psychoanalytic theory has been used to identify interpersonal trauma, rejecting mothers, and destructive parental motives as producing the child’s emotional withdrawal and ego disorganization.”

Schopler explained that through patient advocacy the tide had finally changed and that parents were now seen as co-therapists, rather than the primary cause of their child’s disorder.

Leo Kanner

To understand the scapegoating of mothers of autistic children, we have to go back to 1943 and some of the first cases of autism described by the Johns Hopkins psychiatrist Leo Kanner. Kanner was an authority in the field of child psychiatry. He had written a textbook that was for many years the standard on the subject.

In 1943 he reported a new and intriguing syndrome. Several of the children referred to his clinic displayed peculiar behavior. Kanner described each case meticulously. He noted a profound withdrawal from contact with other people, an obsessive desire for the preservation of sameness, a skillful and even affectionate relation to objects, and problems with the development of language despite signs of high intelligence. The most characteristic feature was the children’s detachment from human relationships: they seemed withdrawn into a shell. They lived within themselves, ignoring most of what happened with others around them. 

Kanner used the word ‘autistic’ to describe this new syndrome, a term derived from the Greek word ‘autos’, meaning ‘self’. It had previously been used by the Swiss psychiatrist Eugen Bleuler to describe a characteristic feature of schizophrenia (for many years there was great confusion about the relationship between ‘childhood schizophrenia’ and Kanner’s infantile autism and the two words were used almost interchangeably).

Refrigerator mother

Kanner had not only described autistic children in great detail but also their parents. He noted that many of them were scientists and highly intelligent. They could focus obsessively on their subject of study but were uncomfortable in the company of other people. Their matrimonial life was a cold and formal affair. Most were perfectionists who did not pursue enjoyment in life but adherence to a set of rules and principles. What struck Kanner the most was what he called a “mechanization of human relationships” in the family. He thought this might provide a clue to the cause of autism.

Initially, Kanner described the disorder as ‘innate’, suggesting that the peculiar behavior of parents was a milder expression of the behavior seen in their autistic children. Later, however, he started to imply that a cold and detached upbringing contributed to autism. “These children were, in general, conceived less out of a positive desire than out of an acceptance of childbearing as part of the marital contract”, he said“Physical needs were attended to mechanically and on schedule according to the rigid precepts of naive behaviorism applied with a vengeance, one can discern relatively few instances of warmth and affection.” In an interview with Time Magazine titled ‘Frosted Children‘, Kanner said that children with autism were “kept neatly in a refrigerator which didn’t defrost.” The parents of autistic children “lacked the warmth which the babies needed. The children did not seem to fit into their established scheme of living.” In a later publication, Kanner wrote that “the emotional frigidity in the typical autistic family suggests a dynamic experiential factor in the genesis of the disorder in the child.”

Kanner was likely seeing the effect of selection bias: parents of the upper class had more opportunities to reach the top child psychiatrist in the country. Sterwald & Baker argue that Kanner also saw patients with autism whose parents did not fit the stereotype but that he did not publish about these cases. 

The world fell for it

In the following years, parents were blamed for causing autism in their children. Because Kanner had used the term ‘emotional refrigeration’, mothers of autistic children were referred to as ‘refrigerator mothers’. They were said to be so cold and detached that their children never learned to relate to other people.

As one American mother of an autistic child summarized her experience: 

“the general knowledge out there, at that point, throughout society was that mothers were responsible for making their children autistic. There was no other view and the world fell for it.” 

It’s worth sketching the background of how the psychogenic theory of autism could flourish. Two lines of research made this view plausible in the minds of many. 

First, several reports suggested that abandoned or institutionalized children developed a high rate of psychic disturbances. In 1951 the British psychiatrist John Bowlby wrote an influential report for the World Health Organization on the subject of ‘maternal deprivation’. It summarized evidence to support the view that “deprivation of mother-love in early childhood can have a far-reaching effect on the mental health and personality development.” Most of these studies were retrospective and overstated their findings, but at the time it seemed a plausible theory. 

The second line of research came from the American psychologist Harry Harlow and his experiments on rhesus monkeys. Harlow and his team had problems with infectious outbreaks in their monkey colonies. To avoid infections they separated the young monkeys from their mothers and placed them in a fully controlled program of physical care. The idea worked as it resulted in a higher survival rate but Harlow and his colleagues were surprised to see that many of the monkeys now showed abnormal behavior. In particular, they paid little attention to other animals and withdrew from social interaction. This led Harlow to note that “the behavioral similarities between the isolate monkeys and autistic infants are striking.” The monkeys of Harlow were however extremely deprived of any social contact. Other experiments showed that rhesus monkeys developed normally if they had contact with peers, even if they lacked the care and nurture of a mother. This was often overlooked and the idea that lack of maternal care could lead to severe behavioral problems was seen as a plausible theory. 

In search of self

The idea that refrigerator mothers caused autism became the dominant view that entered the professional and popular press. A good example of this narrative is found in the book “Dibs, in search of self.” It was published in 1964 by clinical psychologist Virginia Axline and became a bestseller for many years. The book is about a 6-year-old boy named Dibs that displays autistic behavior. Axline claims that the story is based on real events. The parents think Dibs is hopefully retarded and suffers from an organic disturbance that cannot be treated. They fit the refrigerator stereotype perfectly. The father is an important scientist who works obsessively and wants it to be quiet around the house. He shows no interest in his child and is embarrassed by his behavior and odd sentences. The mother is a surgeon, a cold and rational woman who hasn’t formed an affectionate relationship with her son. 

The story is told from the perspective of a psychotherapist who is asked by the school to work with Dibs. The therapist quickly discovers that Dibs isn’t retarded but mentally disturbed. Through play therapy, she discovers the secrets of his past: his parents didn’t want a child, Dibs was an accident and now they resent him for ruining their life. They preferred to keep Dibs away from friends and acquaintances and used to lock him up in a room when they didn’t know how to handle him. Dibbs was filled with rage but couldn’t express it. He had retreated into his shell. With psychotherapy, however, all problems are resolved. The parents come to accept and love their child while Dibs learns to express himself. He fully recovers to become a normal, happy child. Instead of being retarded he is now seen as highly intelligent and gifted. A happy ending overall. 

That reality was often less cheerful, is suggested by the testimony of John Kysar, psychiatrist, and father of a child with autism named Tom. Physicians had diagnosed Tom with brain damage, mental retardation, and autism. A test showed he had an IQ of not more than 50. Some child psychiatrists, however, denied all of that and argued that Tom’s problems were entirely emotional. They thought he could improve just like Dibs. “Tom was diagnosed as schizophrenic with an entirely functional, reversible disorder without any organic basis and with no permanent retardation”, Kysar wrote in the American Journal of Psychiatry. “The autistic withdrawal was believed to be due in part to parental expectations and pressures too high for Tom’s very limited capacities.” Kysar didn’t buy into these explanations but his wife did because she desperately wanted her child to get better. So they tried psychotherapy even though it meant that she would be blamed for her son’s difficulties. Signs of distress, a result of having to rear an autistic, hyperactive and retarded child, were seen as evidence that Tom’s disturbed behavior was parentally induced. Unfortunately, Tom didn’t get better and the whole experience was extremely frustrating to Kysar and his wife. “The denial by some child psychiatrists of organicity and mental deficiency is truly astonishing”, he wrote in anger. “One of the reasons behind this denial seems to be an overriding need to explain all deviations solely in psychodynamic terms.” 

Bruno Bettelheim

The person who was most successful in spreading the myth of the refrigerator mother was Bruno Bettelheim. He was a Viennese lumber merchant who had been imprisoned in Nazi concentration camps. Thanks to influential friends, he was released just before WWII broke out. He fled to the United States, where he managed to present himself as an authority in psychoanalysis and child psychology (even though the only degree he had was in art history). Perhaps it had something to do with his self-confidence and thick German accent, but Bettelheim quickly managed to take over the Orthogenic School for Disturbed Children associated with the University of Chicago. The school would become an experiment for his novel treatment of autism. 

Bettelheim said that the behavior of autistic children reminded him of some of his fellow prisoners in the concentration camps who retreated into their thoughts and avoided eye contact with Nazi guards. In his book ‘The Empty Fortress’ Bettelheim argued that autistic children had also been exposed to such extreme situations. “Throughout this book I state my belief that the precipitating factor in infantile autism is the parent’s wish that his child should not exist”, he wrote. Bettelheim said that autism was the most severe psychotic disturbance known to man, a position towards life even more extreme than suicide. Even though at the end of the book, he stated that he didn’t want to blame parents because they had already suffered enough, the message was clear: children developed autism because their parents didn’t care about their existence. 

The solution according to Bettelheim was to create a place where children would feel so loved and secure that they could be reborn. He made sure the Orthogenic School had beautiful paintings on the walls and that there were plenty of big stuffed animals where the children could play with. Everyone was free to express and develop themselves at a pace that suited them. Children could stay at the school as long as needed or leave whenever they pleased. They could even defecate when and where they wanted (for some reason Bettelheim believed that many problems originated from too stringent potty training). Bettelheim also disapproved of spanking and hitting children as punishment, a progressive idea at the time. “A spanking achieves a short-range goal”, he wrote, “but it has a price tag – degradation and anger – that I am not willing to pay. My task is to build up self-respect.”

Bettelheim didn’t publish much in the scientific literature but he frequently appeared in the popular press. He was featured in tv-programs like the Dick Cavett show and in news outlets such as The New York Times, Newsweek, Time Magazine, and Scientific American. The press praised him as “A quiet advocate for the child” and “A hero of our time”. Because of his deep empathy for children, it was said he sought to heal the emotional wounds of early life. 

When Bettelheim committed suicide in 1990 a different story emerged. People who lived at the Orthogenic School as a child or therapist testified how Bettelheim ruled with an iron fist, frequently hitting children who disobeyed. “He dragged me out of the shower with no clothes on and beat me in front of a roomful of people”, one former resident testified in a letter to the editor of a Chicago newspaper. Others came forward as well, explaining that children at the school had no privacy and, contrary to what Bettelheim told the press, could not leave the place if they wanted to. One person said:“Disagreement with the Orthogenic School party line was considered to be a symptom of ‘emotional disturbance’ […] I spent years trying to second-guess what the staff wanted to hear me say.”

Although some reported positive experiences with the therapists at the school, for many it was a traumatic experience. Charles Pekow, who attended the school as a youngster, testified in the Washington Post: “We were considered hopelessly ‘crazy’ by the outside world and only he could save us from lives in mental institutions or jail. “You get better here or you go to a nut house,” I heard him routinely tell school-aged children.” Others criticized the “insistence on locating psychosomatic origins for our physical ailments before seeking medical advice.” Pekow said that he often lay awake at night, “gasping for breath, because I was refused medication prescribed for my allergies.”

Extreme and explosive hatred

His former students were not the only ones who resented Bettelheim’s work and the favorable image the press had made of him. For many families with an autistic child, he was a villain as well. Bettelheim not only said that lack of love and empathy could result in autism, he also stated that the autistic child was full of concealed hatred: “when his emotions begin to thaw, what unfreezes first is blind hatred and rage.” 

Statements like this made parents wonder in agony what they could have done wrong to their child. In the excellent documentary ‘Refrigerator Mothers’ several mothers testified about their experiences: 

“What have we done that is so awful that would drive a child into such a regression? I was told I had not connected or bonded with the child because of inability to properly relate to the child. And this caused autism. I couldn’t quite see how that would happen. But here’s someone of authority saying it had happened.”

I wanted it to be true

Many parents went along with psychoanalytic reasoning because they were told so by experts and because they wanted to do anything to make their child better. Donata Vivanti of Autism-Europe, said that many Italian mothers were happy to accept the idea that they were somehow to blame for their child’s autism because it gave them hope that, by changing, they could improve the child’s condition. An American mother, Annabel Stehli, explained this very powerfully: 

“I wanted to have it to be true so I could change and she’d get well, don’t you see? I don’t care what you put on me. If it was true, and I changed, she’d get well. That’s what I wanted to believe”

Sending children away

Richard Pollak, who ended up writing a biography of Bettelheim, describes how his younger brother Stephen also went to the Orthogenic School in Chicago. Stephen died in an unfortunate accident during a family holiday. Many years after his death, Pollock went to visit Bettelheim to hear his view on his brother’s case: “My mother was the villain. He said she paraded as a saint and a martyr when, in fact, she was almost entirely responsible for my brother’s problems. With astonishing anger, he said she had rejected Stephen at birth and that to cope with this lockout he had developed.” Bettelheim even went as far as to claim that young Stephen had committed suicide. 

Bettelheim didn’t want children to go back home because, in his view, that’s where the problems started. The child psychologist Carl Fenichel said that Bettelheim once told him that his education program for autistic children is good but that it isn’t going to work because it’s a day-school program: “These kids are going to be coming home at the end of the day to the very parents who caused the illness. Everything you do is going to be undone by the parents.”

The experience to have a disabled child taken away was extremely difficult for parents with autistic children. This method was not only used at the Orthogenic School but in other places as well. In the documentary Refrigerator Mothersone American mother explained that at one point she couldn’t see her autistic son and that this “was the most painful experience in my life. I have been through loss of my health. We lost our business, I’ve lost my house, I went through divorce. While all those things were very painful, nothing compares.”

Parents fighting back

In the 1940s and 50s, many parents of autistic children had to figure out on their own that experts were talking rubbish when it came to autism. Ruth Sullivan was one of them. It didn’t take her too long to understand that the psychogenic theory of autism didn’t make sense. “I know that I didn’t treat him so badly, that he is going to be maimed for the rest of his life” she says in the documentary ‘Invisible Wall’. “I just know this is not true.” Sullivan realized that parents had to connect and organize to counter these harmful myths. She would help found the National Society for Autistic Children (the forerunner of Autism Society of America) in 1965.

The man she teamed up with was Bernard Rimland. He too was a parent of an autistic child. He worked as a psychologist in the army and often had to travel all over the US. He used this opportunity to skim through libraries searching for anything ever published on autism. When his collection of information grew larger and larger he finally decided to write down his conclusions in the form of a book. It was published in 1964 under the title ‘Infantile Autism’ and it had a strong and immediate impact on how the illness was viewed. 

Rimland carefully weighted and analyzed each argument for psychogenic causation and each argument for biological causation to conclude that the former didn’t make much sense. He noted for example that parents with autistic children often had other children who developed normally. He pointed out that – contrary to what was often claimed – psychotherapy did not have beneficial effects. That no pathology could be detected in patients with autism was not unusual, Rimland said, because little was known about how the brain functions: “Neurological science thus far has been quite unable to furnish an adequate description of the neural processes involved in even the very simplest forms of mental activity”. Rimland also collected information on published cases in twins and highlighted how most of these were identical twins, suggesting a genetic contribution to autism. 

Eventually, the tide shifted. Psychoanalysis became discredited and mothers were no longer blamed for causing autism. But parents had to organize and challenge experts, to make that happen. In a future blog post, we hope to delve into the dark psychosomatic history of schizophrenia as it has many parallels with autism. If you would like to receive a notification each time a new blog article appears, you can enter your email address in the subscription box to the right. 

1 thought on “The dark psychosomatic history of autism

  1. bert schulte says:

    wat een goed overzichtsartikel ! En wat een drama voor de kinderen

    Reply

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