Autism, the Term

Autism has always been a confusing word. It was first used in the early twentieth century by Swiss psychiatrist Eugen Bleuler to describe a characteristic of adults with schizophrenia, a term he also coined. In his 1911 text, Dementia Praecox or the Group of Schizophrenias (translated into English in 1950), Bleuler used “autism” to describe a state of insulation from reality so complete that it excluded other human beings. Autism indicated “detachment from reality, together with the relative and absolute predominance of the inner life.” Blueler understood schizophrenia as an adult illness, but similar behavior had been observed in children who seemed to live in worlds of their own. “We know of no differences between the infantile and other forms of the disease,” he concluded.

Based on such impressions, many clinicians a century ago believed that children with autism would develop into adults with severe mental illness, most destined for institutionalization. Studies of hospitalism persuaded many observers that institutional residence early in life could cause a wide range of developmental delays and abnormalities, including behaviors such as social withdrawal and self-stimulation. Before 1940, descriptions of autistic-like conditions appeared in professional journals in Europe as well as in the United States. In that literature, the word autism was rarely used. Clinicians wrote about childhood psychosis or childhood schizophrenia.

By the 1940s, a few physicians associated with the new specialty of child psychiatry began using the word autism differently. They had seen a combination of bizarre symptoms in young children: not only social remoteness but feeding difficulties in infancy and preference for rigid, repetitive routine over any kind of novelty. The most famous early clinical description of this syndrome was published in The Nervous Child in 1943 by Leo Kanner of Johns Hopkins University. In “Autistic Disturbances of Affective Contact,” Kanner presented eleven case studies of children he had seen since 1938. Kanner echoed Bleuler in suggesting that interpersonal disconnection was the quintessential autistic attribute, but he carefully distinguished autism from schizophrenia. Autism was a condition of extreme aloneness that shut out all stimuli from a very early age, perhaps even birth. In contrast, schizophrenia caused individuals to withdraw from a social world they had previously inhabited.

In 1943, Kanner called autism “inborn,” suggesting that the syndrome had some biological basis, but he also remarked on the highly educated and aloof fathers and mothers of the eleven children he described. “For the most part,” Kanner noted, “the parents, grandparents, and collaterals are persons strongly preoccupied with abstractions of a scientific, literary, or artistic nature, and limited in genuine interest in people.” A disproportionate number of children seen by clinicians for any reason at all, of course, came from affluent families who could afford clinicians’ services, but Kanner’s observations supported psychogenesis, a theory that attributed autism to parental, especially maternal, hostility or indifference. Kanner’s article circulated mainly in specialized circles at the time. Today, it is considered synonymous with the discovery of autism itself.

Clinicians who encountered autism in the 1950s and 1960s called it by many names. Among them were Kanner’s syndrome (named after Leo Kanner), early infantile autism, hyperkinetic disease, and Heller’s disease (based on 1908 description by Austrian educator Theodor Heller), also known as dementia infantilis. Childhood schizophrenia and psychosis remained the most common labels. Terminological precision was not always the highest priority in clinics and hospitals, where ordinary language prevailed. Children who had been called feeble-minded a few decades earlier were now called nervous, mentally defective and deficient, emotionally disturbed, or even brain-damaged, depending on local conventions. Educators and parents used these words too. Whatever they called it, autism was considered exceedingly rare.

All of this has changed since the 1960s. The most recent CDC estimate (based on 2014 data) is that 1 in 59 children has been identified with Autism Spectrum Disorder (ASD), which is how autism is now listed in the DSM. Autism has been included there as an independent diagnosis since 1980. Whether the risk of developing autism has actually increased over the past several decades is one of the most vexing questions about autism, and the subject of much research.

The many terms that have been used to describe autism explain not only why it took until the postwar period to become perceptible as a discrete condition, but how little conceptual consensus there has ever been about its definition or causes. Was autism really a single, unified syndrome or a number of distinctive conditions that shared common features? Was autism the earliest manifestation of schizophrenia or something quite different? Was it logical to include autism under the rubric of mental illness or would it be more accurate to classify it as mental deficiency, neurological failure, or developmental deviation? Were traumas in infancy and early childhood (such as maternal, sensory, or cultural deprivations) responsible for autism or were genetics and biochemistry more consistently implicated?

In the 1970s and 1980s, as research on the genetics of schizophrenia progressed, it became clearer that autism was not a pediatric version of that illness. The terms childhood schizophrenia and childhood psychosis consequently dropped out of use. The theory of autism’s psychogenic origins, which reached its zenith in Bruno Bettelheim’s 1967 book, The Empty Fortress: Infantile Autism and the Birth of the Self, was vehemently rejected by researchers, like Bernard Rimland, who pursued a neural theory of behavior in Infantile Autism, and by parents who had endured years of frustration and blame. In place of psychogenesis, an equally emphatic biogenic paradigm was constructed. It remains firmly in place today.

Between 1970 and 2000, the word autism was more widely recognized and utilized, thanks to the visibility of figures like Temple Grandin and controversies over whether childhood vaccines were implicated in autism. The term’s new familiarity corresponded with the recognition that autism belonged under the heading of developmental disability (a term first introduced in 1970), was categorically distinct from mental illness, and should be distanced from the language of psychiatry. The Journal of Autism and Childhood Schizophrenia, established in 1971, for example, changed its name in 1979 to the Journal of Autism and Developmental Disorders. Detaching autism from its historic association with insanity and custodial care made a hopeless future seem less inevitable for children and families. Attaching the term to the rise of the neurosciences compounded this effect.

During the past two decades, autism’s vocabulary has continued to evolve, mirroring broader cultural trends. Like much language associated with disability, many autism advocates have adopted a “people first” orientation which separates the individual from the condition so that disability does not define the whole person. According to this way of thinking, “a child with autism” is preferable to “an autistic child” because “a child with autism” has many other attributes in common with children who do not have autism. The growing emphasis on diversity and inclusion in the United States also inspired terms like neurodiversity and neurotypicality, which aimed to sideline the vocabulary of deviation or disease. New words signaled an awareness that both normality and its opposite exist only in relation to each other.

The goal of language change was to move autism away from the pathologizing labels of the past and onto new terrain where brain-based diversity was unlinked from historic stigma. Some advocates have gone so far as to celebrate autism as a benign expression of both neurology and culture. Young adults diagnosed with Asperger’s syndrome, for instance, rallied around the term “Aspies” and celebrated the nerdiness frequently associated with the diagnosis. They met with some criticism in the world of autism advocacy, where parents of severely affected children who could not communicate or care for themselves did not see eye to eye with adults who were able to function independently, even thrive in the world of work.

The career of autism as a term illuminates the complexity of autism as a historical subject. The word itself has had many points of contact with the history of medicine and psychology as well as the history of development, diagnosis, and disability.

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