Autism was first discovered in 1943 by a child psychiatrist named Leo Kanner from Baltimore who had 11 unusual patients – children who inhabited private worlds, ignoring the people around them. They could amuse themselves for hours with little rituals like spinning pot lids on the floor but were panicked by the smallest changes in their environments such as a chair or favorite toy being moved without their knowledge. Some were unable to speak, while others only repeated things detachedly in the third person. Claiming that their condition differed markedly and uniquely from anything previously reported in the clinical literature, he named it autism – from the Greek word for self, autos – because they seemed happiest in isolation. But adults weren’t on Kanner’s radar at all until much later. The notion that his young patients might grow up to become physicists or chemists would have seemed absurdly optimistic. A more likely prognosis was a lifetime of custodial care in a state hospital, Raymond Babbit’s fate in Rain Man. For decades, Kanner maintained that his syndrome was monolithic, limited to childhood, and vanishingly rare. It was not merely an eccentric cognitive style or an alternate lifestyle but a tragic form of childhood psychosis, akin to schizophrenia, caused by inadequate parenting.
A year later, a Viennese clinician named Hans Asperger discovered four young patients of his own who seemed out of touch with other people, including their own parents. Unlike Kanner’s patients, these children spoke in elaborate flowery sentences while displaying precocious abilities in science and math. He dubbed them “little professors”. He also called their condition autism. Asperger developed a very sophisticated view of his patients, still advanced even today. The autism that he learned to recognize was not at all rare, was found in all age groups, and had a broad range of manifestations, from the inability to speak to an enhanced capacity for focusing on a single subject of interest for an extended period of time without distractions. In other words, it was a spectrum. Once you knew what to look for, you saw it everywhere.
Most of Asperger’s records were destroyed in the war and along with them his advanced theories of autism. Their place was taken by Kanner’s retrogressive theories, ones that lasted for the next 50 years and were unquestioned by clinicians who considered Kanner the lone pioneer in the field of autism research. Autism was even referred to as “Kanner’s syndrome”. The fact that two clinicians, working independently on both sides of the Atlantic, discovered it nearly simultaneously is still considered one of the greatest coincidences of 20th-century medicine.
Kanner encouraged the view that Asperger’s work was unworthy of serious consideration by maintaining complete silence about his Viennese counterpart. Kanner was a native German speaker and was intimately familiar with Asperger’s work. He lost perspective on his patients as living examples of points on a broad continuum extending into adulthood.
He also lost the view of the eccentricities of their parents and relatives. Asperger saw threads of genius and disability inextricably intertwined in his patients’ family histories testifying to the complex genetic roots of their condition and the “social value” of this personality type whereas Kanner saw the shadow of the sinister figure that would become infamous in popular culture as the “refrigerator mother”. Theories of toxic parenting were labelled the schizophrenogenic mother hypothesis – women with professional ambitions whose dreams were thwarted by motherhood resulted in deep hostility for their children, cloaked in an overweening concern for their welfare. Blaming his parent’s behaviour had wide-reaching implications. Kanner made his syndrome a source of shame and stigma for families worldwide while sending autism research off in the wrong direction for decades. Kanner’s sins of omission had grave consequences for autistic people and their families, which are still playing out today.
Kanner found it inconceivable that these children might be interested in the geeky minutiae they rattled on about with such intensity and fervour. Where Asperger recognized a specialized form of intelligence systematically acquiring data in a confusing world, Kanner saw a desperate bid for parental affection. He theorized that overambition parents had stuffed the impressionable minds with useless information to cast themselves in a culturally favourable light and bolster their own egos.
Kanner was a gifted listener and interviewer and obtained detailed patient histories. He turned these into a weapon, citing them as a “telling illustration of parental obsessiveness. He used the word obsessive frequently. He would describe parents who he believed read all sorts of peculiar interpretations into the child’s performances, watching and recording every gesture and every “look”, trying to find their specific significance, and finally deciding on a particular, sometimes very farfetched explanation. He described that the parents, grandparents, and collaterals were persons strongly preoccupied with abstractions of a scientific, literary, or artistic nature, and limited in genuine interest in people. There were very few really warm-hearted fathers and mothers. Even some of the happiest marriages were rather cold and formal affairs. While emphasizing the likelihood that autism was innate and inborn, he left the door open to a more unsettling possibility: that these children had been pushed into mental illness by their selfish, compulsive, and emotionally frosty parents, who tried to substitute poems and symphonies and catechisms and encyclopedias for the nurturing love they were unable to provide.
The discovery of the first form of major psychosis that was present at birth led to the study of prenatal and postnatal development, genetics, and neurology, all of which Kanner was eager to integrate with psychology. It undercut other theories of delinquency and mental illness in adulthood. A condition that was inborn could not be prevented – it could only be ameliorated. The fact that his patients’ parents would unjustly pay a heavy price if his theory turned out to be wrong didn’t factor into his calculations.
A consequence was that his interpretations had the effect of limiting interest in the study of autism for the next four decades. In speculating on the prevalence of his syndrome, he thought that it was rare enough and possible that some such children were viewed as feebleminded or schizophrenic. His insistence that his syndrome was rare was decidedly premature. Kanner was one of the very few child psychiatrists in the country at that point. Families of limited means who couldn’t afford to see pediatricians, psychologists, and neurologists until they were referred to specialists like him, weren’t even on this radar.
If his syndrome had less blatantly disabling forms, most developmental disabilities do, Kanner would likely have missed them altogether, as he saw only the most perplexing, unmanageable, and difficult cases. In essence, he was sitting at the apex of a pyramid designed to filter all but the most profoundly disabled children of the most well-connected families in America. It’s not surprising that his syndrome seemed both exceptionally rare and strikingly monolithic. Kanner continued to ensure that other researchers saw his syndrome as rare and monolithic, even after evidence to the contrary began to emerge.
Could children with limited expressive vocabulary but a capacity to retain words and use them in a mechanical way, a repertoire of more than a hundred nursery rhymes recited from memory, be said to be developing in a typical way before their regression? Could Kanner legitimately assert that his syndrome was always apparent at birth when his patients were five years old on average when he first saw them? In 1955, Kanner finally retracted this claim. The boundaries between Kanner’s ”unique” syndrome and what other clinicians were calling childhood schizophrenia were blurrier than he tried to make them.
Kanner’s overreach resulted in his papers getting little attention while those on childhood schizophrenia had thousands of papers. Most exhibited a number of behaviours that are now considered classic signs of autism including whirling, stimming, echolalia, and an apparent lack of awareness of other people. It was described as pervasive, affecting every aspect of the child’s body and mind. But is was also noted that even some of the most profoundly disabled children were capable of remarkable displays of “accelerated creativeness” and “Picasso-like experiments” in music and art. Descriptions of childhood schizophrenia were closer to Asperger’s than Kanner’s constricted view of his syndrome.
The prevalence of childhood schizophrenia started spiking in the mid-twentieth century. None of these children exhibited hallucinations, delusions, or the other fulminant manifestations typically associated with the word psychotic. It was not monolithic but had an astonishingly diverse range of presentations. The idea of a psychopathological spectrum was introduced. Rather than Kanner’s syndrome being defined too narrowly, childhood schizophrenia had the opposite problem: its boundaries were so diffuse that it included too many different types of patients. By the late 1950s, children with the diagnosis filled state hospitals and schools for mental defectives.
Even Kanner by 1949, had accepted that early childhood autism was childhood schizophrenia, the same as childhood psychosis. This made accurate retrospective assessments of the prevalence of autism in the mid-twentieth century virtually impossible as so many autistic children ended up hidden behind other labels. The rise of psychoanalysis led to the credence that autism was rooted n disturbed family dynamics. This was brutal for parents. These children had turned their backs on other people because they sought solace in solitude after being “kept neatly in a refrigerator which didn’t defrost”. The image of the refrigerator mother proved indelible in the popular imagination. In Kanner’s view, fathers were equally culpable. These children were not raised in a warm, flexible, growth-promoting atmosphere, but instead, physical needs were met mechanically and on schedule and were rewarded for “perfect behaviour, cleverness, self-sufficiency, rather than being valued simply for existing. The outcome was the widespread adoption of an approach to therapeutic intervention for autism that included years of psychoanalysis for the parents, and removal of the children to an institution “for their own good”.
Popular magazines carried articles reinforcing the parental role in producing schizophrenic children. Once a child diagnosed with childhood schizophrenia was placed in a state hospital, they were no longer treated as a child. Instead, they were blasted with the whole armamentarium of powerful drugs, last-ditch methods, and experimental treatments that the psychiatric establishment usually reserved for its most intractable adult psychotics. Electroconvulsive therapy (ECT) was a preferred method of treatment. Sub-coma insulin shock and Metrazol, a drug that produced convulsions were also used. Chlorpromazine and prochlorperazine, first-generation antipsychotics, were also used, and became infamous for causing an irreversible tic disorder known as the “Thorazine shuffle”. Benzedrine, the classic pep bill of Beat Generation lore was apparently particularly successful. Reserpine, another antipsychotic, was claimed to be “among the best drugs” for treating children, despite a roster of side effects that included nightmares, vomiting, and suicidal ideation. LSD was obtained legally from Sandoz Pharmaceuticals (brand name Delysid), was administered every day for two months, and was claimed to be able to wean them off their usual diet of tranquillizers. For those able to afford it, hundreds of hours of psychoanalysis were also prescribed.
Being locked out of a diagnosis often meant being denied access to education, speech and occupational therapy, counselling, medication, and other forms of therapy. For undiagnosed adults (excluded by Kanter as he insisted autism was a disorder of early infancy) meant decades of wandering in the wilderness with no explanation for constant struggles in employment, dating, friendships, and simply navigating the chaos of daily life.