The Battle to Define Autism

Hans Asperger was giving a speech that was a matter of life and death. It was 1938 and Asperger was a pediatrician in Nazi Germany, working with an unusual group of children who didn’t fit common diagnoses or disabilities. At the time, Asperger’s young patients were under the scrutiny of the Gestapo, who were seeking to eliminate “undesirable” children as part of a new Nazi eugenics program which eventually became the broader system of mass murder in concentration camps.

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Recently, Asperger has fallen under scrutiny by historians seeking to understand the moral spectrum that he embodied. For years, he was portrayed as a hero of children with autism, as he identified their strengths and unique characteristics, and also was reported to have protected them from the Nazi regime. However, other information paints a different picture of Asperger—a physician who opportunistically referred some of these children to Nazi eugenics programs and worked closely with the Third Reich (for a thorough review of the history of the autism spectrum, see Silberman, 2015).

While Asperger’s reputation as a champion has changed, his speech was still the first public lecture on autism and was radical in its effort to frame these children in terms of potential, rather than deficits. His lecture and subsequent writings began to define what would eventually become our current understanding of autism spectrum disorders (ASD). However, it has taken a journey of detours, colorful personalities, fraudulent studies that continue to be debunked, and changing awareness to arrive at our current understanding of what autism is.

The Early Years—Autism Emerges

Although many people think of autism as a relatively new disorder, the roots of the word stretch back to the Greeks. Named after the word “autos,” autism means “self,” a term that describes the tendency to turn inward or limit social interaction. In the 1860s, Dr. John Langdon Down, who was the first to define Down’s syndrome, was doing research on mental disabilities and outlined a condition he called “developmental retardation,” which describes what today would generally fit on the autism spectrum. However, it wasn’t until over a century ago that Eugene Bleuler, a Swiss psychiatrist and eugenicist, first coined the modern term “autism” in 1910.

The 1930s and 1940s—The Battle to Define Autism

After Bleuler coined the term autism, little happened to clarify what the condition consisted of. In the 1930s and 1940s the clinical definition of autism began to transform, which was brought about by two men — Hans Asperger and Leo Kanner. Although Asperger’s ideas were more on target with what ASD would become, it was Kanner’s conception of autism that dominated the following decades.

Asperger’s key contribution was his realization that many children he saw in his medical research and practice were mislabeled. Some who were labeled mentally deficient or schizophrenic shared unique characteristics, particularly in how they related to others. These atypical styles sometimes included less eye contact, odd physical gestures, monotonous speaking tones, or muted facial expressions. In spite of these unusual social tendencies, many had remarkable talents when it came to specific subjects, such as astronomy, math, and technology. Asperger called some of these offbeat but bright children his “little professors,” and according to him, they showed an extreme personality type that was detrimental only when their environment and support systems were not a good fit for them. As Asperger looked further, he saw autistic traits scattered throughout family trees, and he suggested that these eccentric traits were found in gifted and nonconforming achievers throughout history.

Leo Kanner also hailed from Austria, but after his medical studies in Berlin, he emigrated to South Dakota in 1924 to pursue a career in child psychiatry. Like Asperger, Kanner identified a group of children that at the time were lumped into general categories of “imbecility” or “mental retardation” that were different, with tendencies toward isolation and repetition. Unlike Asperger, Kanner thought that autism was an extreme disability, with only those at the severely impaired end of the spectrum fitting the diagnosis. Kanner also saw autism as a childhood disorder rather than a lifelong condition. His primary paper, “Autistic Disturbances of Affective Contact,” was published in 1943 and was very influential in shaping the medical and public understanding of what came to be called autism: a distinct, rare, and very serious disorder. Despite Kanner’s advocacy for children and the mentally ill, his restrictive version of the diagnosis meant that few received services. To make matters worse, Kanner also made claims that mothers were the cause.

The 1950s and 1960s—Autism Gets Canonized and Mothers Get Blamed

Kanner shared details of children in case studies who fit the criteria for his diagnosis of infantile autism. These children were largely from upper-class, educated families, and Kanner deduced that these children were more likely to come from academically inclined, cold, and emotionally unresponsive parents. Kanner is dubiously credited with the term "refrigerator mothers," which is a mother so unresponsive and chilly that her child is permanently altered into an unfeeling robot. This view took hold in the social and medical norms of the 1950s, where rigid expectations for mothers, along with the dire consequences of their deficits, were promoted.

This set the stage for another enterprising academic, Bruno Bettelheim, to promote a more insidious version of the root cause of autism. Bettelheim wrote articles and made TV appearances promoting his view that children with autism experienced horrors at home similar to prisoners in Nazi concentration camps (where Bettelheim himself had been imprisoned). He compared mothers to Nazi guards and suggested that autism was a trauma-reaction, where children refashion themselves into machines to cope with their abuse. Bettelheim claimed to be a child development professor but his doctorate was in art history, and eventually his stories began to unravel.

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The extremity of these two views had the effect of raising public awareness of autism, but many lives were damaged in the process. As the 1960s progressed, the evidence for parental injury was called into question, and the evidence for a biological basis for autism began to mount. At the end of the decade, Kanner recanted his earlier views, and in a public lecture to families of autistic children, he said, “Herewith I acquit you as parents.”

Influence of the DSM

In 1952, the American Psychological Association (APA) published a slim volume called the Diagnostic and Statistical Manual of Mental Disorders, or DSM. Used by only a few professionals at first, this DSM did not include autism as a diagnosable disorder; instead, children exhibiting symptoms were diagnosed with schizophrenic reaction, childhood type. This initial codification mostly reflected symptoms that conformed to Kanner’s severe, isolated, and nonverbal type.

The DSM-II kept the schizophrenic reaction diagnosis but added language describing these children as having “autistic, atypical and withdrawn behavior and general unevenness.” Less useful was the speculation about autism’s etiology as a child’s “failure to develop separate identity from the mother’s.” Outside of asylum walls, few used the DSM, and autism largely remained in the shadows as a rare and little-understood disorder. The DSM III would change that.

The 1970s and 1980s—Autism Redefined

Dr. Robert Spitzer, charged with the task of redesigning the DSM, gathered teams of data-oriented people to compile information about all known mental illnesses. After a long process, the DSM-III was published in 1980, weighing in at a hefty 500 pages. Included among the newly clarified, behaviorally-based disorders was Kanner’s infantile autism, which was given two primary criteria of (A) pervasive lack of responsiveness to other people and (B) resistance to change. A checklist of six symptoms had to be met in order for a person to qualify for the diagnosis. These six symptoms were: (1) onset before 30 months of age; (2) pervasive lack of responsiveness to other people; (3) gross deficits in language development; (4) if speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal; (5) bizarre responses to various aspects of the environment; and (6) absence of delusions, hallucinations, loosening of associations, and incoherence as in schizophrenia.

Although the mother blaming was gone, the DSM-III still suggested that autism was more likely to occur in upper socioeconomic classes. This official version of the diagnosis was the start of something new but continued to neglect those who did not display every symptom, who were not diagnosed until after 30 months, or who were from working class backgrounds.

The DSM-III found its way onto the shelves of government officials, teachers, social workers, lawyers, judges, insurance companies, healthcare workers, and researchers. However, although the DSM-III clarified autism as a distinct condition, practitioners complained that its definition was narrow and difficult to apply to real-life cases. In response, the APA began work on a revised version of the DSM-III, known as the DSM-III-R. For this edition, Spitzer handpicked Lorna Wing, Lynn Waterhouse, and Bryan Siegel to revisit and improve the definition of autism and make the newest version of the DSM easier to use.

Lorna Wing’s work on the diagnostic guidelines proved particularly influential. A British psychiatrist and a parent of an autistic child, Wing was curious about the children who met some criteria but not all and therefore went undiagnosed. Wing gave fresh energy to Asperger’s idea of autism as a broad continuum, and she began using the term "spectrum" as a way to emphasize this dimension. Her work with the new taskforce led to the APA replacing infantile autism with autistic disorder and expanding the definition to a lifelong condition rather than a rare childhood occurrence in the DSM-III-R. Additionally, the age of onset was no longer limited to before 30 months. The symptom checklist was also radically changed, with criteria becoming more concrete and observable. Clinicians could now diagnose an autistic disorder when patients exhibited eight of sixteen total symptoms and at least two items from section (A) qualitative impairment in reciprocal social interaction; one item from section (B) qualitative impairment in verbal and nonverbal communication and in imaginative activity; and one item from section (C) markedly restricted repertoire of activities and interests. Finally, adults, high-functioning autism diagnoses, and those who exhibited only some symptoms could receive support and services, and autism began to lose its reputation as severe and rare.

The DSM-III-R overshadowed the DSM-III in popularity. Half a million copies sold, and growing support accompanied the growing awareness. After the publication of the DSM-III-R in 1987, autism-related legislation increased, and in the United States, the Individuals with Disabilities Education Act (IDEA) incorporated autism into its programs, providing special services and individualized instruction for children on the spectrum. IDEA made it obligatory for schools to report the number of diagnosed children enrolled in school, so a count could be made. Additionally, state legislatures passed laws so funds would be disbursed to families that chose to embark on early-intervention therapy.

The 1990s—Autism as an Epidemic?

With increasing awareness, better screening tools, and an expansion of diagnostic criteria, autism rates continued to soar. After the publication of the DSM-IV, numbers spiked again. However, one of the causes for the increase was a typo. In the DSM-IV, there was a small change in the wording for diagnostic criteria. Previously it said that symptoms must be present in communication, social interaction, and behavior, but version IV required the identification of symptoms in communication, social interaction, or behavior. Additionally, in the DSM-IV, Asperger’s Disorder was added as a distinct diagnosis, which was similar to Autistic Disorder but with higher-functioning verbal and communicative skills.

This increased flexibility and general awareness continued to increase numbers of people with the diagnosis. However, many concerned parents and doctors speculated over what could be causing autism, blaming everything from polluted water to cell phones. The U.K. Department of Education and Skill undertook a study and confirmed that the increase in cases was due to better recognition rather than other external factors, but in spite of this report, rumors and speculation continued to grow. One of the voices of alarm belonged to autism advocate Bernard Rimland.

Rimland’s efforts to advocate for children and parents started in the 1960s and by the 1990s he was established as a well-respected leader in the ASD community. In 1995, Rimland wrote a newsletter article that was fueled by the countless stories he had heard of children who began showing symptoms soon after they were vaccinated.

As the anxiety mounted about an autism contagion, gastroenterologist Andrew Wakefield published his now-infamous article in the British medical journal The Lancet. Wakefield was not an autism expert but studied the relationship between viruses and diseases, such as Inflammatory Bowel Disease. Wakefield’s article suggested that there was a causal relationship between Thimerosal, a preservative used in certain vaccines, and autism. Wakefield used a press conference to present these findings to reporters who had been prepped by promotional videos and hype ahead of time. However, other research soon emerged that systematically debunked Wakefield’s claims. After further investigation, his medical license was revoked, ten coauthors removed their names from the paper, and eventually the entire paper was retracted and deemed a fraud. Despite evidence of Wakefield’s dishonesty and claims of child abuse in his research, Wakefield continued to assert his innocence, and anti-vaccine information still spreads from conspiracy theorists, even as ongoing research finds zero connection between vaccines and autism.

The 2000s and Beyond—A Return to the Spectrum

In recent years, the controversies of an autism epidemic have died down as evidence continues to accumulate that the condition is rooted in genetic and neurological processes. It is now generally argued that research on awareness and support is preferable to seeking dubious causes and cures. The quality of life for families and individuals affected by this condition is much better than it was in past decades. Allowance for quirks in behavior is becoming normal, programs to support those with ASD diagnoses are proliferating, and a vision of a broad spectrum has been restored. This is reflected in the DSM-5, which in 2013, rechristened the condition as Autism Spectrum Disorder (ASD) and dropped the separate diagnoses of Asperger’s and Pervasive Developmental Disorders. According to the DSM-5, there are only two diagnostic criteria: (A) social communication/interaction and (B) restricted and repetitive behaviors.

There are now questions whether ASD should be categorized as a medical or psychiatric disorder at all. Clearly there are many on the spectrum that require substantial support, or whose life includes serious challenges. However, there are many who, although not neurotypical, enjoy full and productive lives, share joy with those around them, and contribute interesting and important strands to the tapestry of humanity. In this view, autism spectrum functioning is an alternate, but equally legitimate mode of being. Over the next century the spectrum will continue to stretch and accommodate many, as will our understanding and appreciation of those who live in it.

Adapted from: Systemically Treating Autism: A Clinician’s Guide for Empowering Families. Turns, B. T., Ramisch, J. & Whiting, J. B. (Editors). 2019.

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