A Brief History of Autism
To better grasp autistic culture and politics, one must understand the history that brought autistics to this point. Autistic culture is complex, passionate, and punctuated by beliefs that both polarize and unite the autism community. These beliefs often represent contrasting motivations, such as a parent’s desperation to rescue their child at almost any cost, an overarching value for unity and resilience, and a nothing about us without us expectation for autistic representation in all things autism-related. These intense and sometimes paradoxical perspectives are deeply rooted in the historical accounts of autism’s origin and evolution. What follows is a partial history specifying key leaders and resources that shaped the field of autism research, treatment, and support. As autism as a disorder didn’t exist until the mid-20th century, I’ll use the term Developmentally Disabled when describing earlier periods to refer to this group.
Historical Context – Fear and Loathing
Although autism disorder didn’t surface until the mid-20th century, a sage majority believe it has existed for centuries before – and that history hasn’t been kind. Autistics, with wide-ranging behavioral and communication differences, customarily found themselves in the neurotypical crosshairs of hatred and violence. Historical accounts of their treatment are shocking. Early Americans applying religious morals often viewed their developmentally disabled children as God’s punishment for sin or, more damning, as incarnations of evil. These children were often born into unaccepting and cruel surroundings, preferably locked away in the family home, but more likely abused, tortured, and killed trying to navigate an intolerant world.
The 19th and 20th centuries continued in kind, as doctors customarily advised parents to institutionalize their developmentally disordered children in asylums, then remove their child’s pictures and memories from the family home – advice parents regularly followed. The stories of children’s lives in these institutions are well-documented and disturbing. Life in the asylum, more prison than hospital, included a steady diet of extreme abuse, including electroconvulsive therapy, rape, daily use of restraints, and additional forms of physical abuse and humiliation. Often losing the ability to speak and the capacity for self-control, many of these patients deteriorated into an unrecognizable state, slowly losing the essence of their humanity.
Perhaps the most dehumanizing period on a mass scale occurred during the eugenics movement of the late 19th and 20th centuries. The rise of eugenics began in 1883 when Francis Galton, a cousin of Darwin, coined the term eugenics and advocated that resources be devoted to advancing the “fittest individuals.” Galton’s idea metastasized quickly among scientists, intellectuals, and political leaders from industrialized countries, including the US. By World War I, the eugenics machine and its compulsory sterilization practices were fully operational. In the US, Indiana led the legalized campaign against disabled “idiots” and “imbeciles,” claiming they were “empty husks” and “contaminants to the gene pool.” The Hoosier State sent countless developmentally disabled adults and children to the sterilization chamber, an example to be followed by 32 other states. This was a dark time in the United States.
In Europe during World War II, the Nazi party enacted the law Prevention of Genetically Diseased Offspring, ultimately sterilizing over 400,000 disabled individuals, including children. More horrifically, over 200,000 disabled children and adults were murdered as part of the Nazi Aktion T4 and child euthanasia programs. The Nazi genocide of autistics, and others with disabilities, is an often-overshadowed horror of history.
Since the industrial revolution, autistics have continued to experience severe and debilitating discrimination in schools, workplaces, etc., often leaving them uneducated, unemployed, or homeless. Since the early 1960s, autistics and their advocates have fought for the legal rights and liberties they have today. Examples of their landmark legislative achievements include:
- Section 504 of the 1973 Rehabilitation Act, then reauthorized into the 1990 Americans with Disabilities Act (ADA) which, among other rights and freedoms, bans discrimination based on disability, endowing autistics and other disabled people with class status; and
- the 1975 Education for All Handicapped Children Act – reauthorized in 1990 as the Individuals with Disabilities Education Act (IDEA), promising a free and appropriate public education, including special education services, to children with autism and other disabilities.
Although establishing this legislation was a win for autistics, successful execution on the ground has been difficult and ongoing, frequently requiring regular policy revisions and amendments. This process of implementing and amending is often disrupted by the continuous threats to this legislation at the state and federal levels. Less resourced than other minority groups, it takes the majority of the autism community continuously lobbying for autism awareness and acceptance to maintain and expand this body of rights.
The Early Days of Autism – A Challenging Start
Early theorists intermittently used the term autism when referring to individual symptoms of schizophrenia, as German psychiatrist Eugene Bleuler did in 1908. However, autism as a disorder didn’t formally come into being until the mid-20th century. Two psychiatrists on different continents, Leo Kanner and Hans Asperger, officially named the condition in 1943 and 1944, respectively. However, both psychiatrists and their condition descriptions differed considerably.
Leo Kanner, born in Austria in 1894, started his career as a cardiologist in Berlin. After serving as a medic in World War I, Kanner and his young family immigrated to the US in 1924, where he taught himself English and pediatric psychiatry while working as a doctor. In 1930, Kanner developed the child psychiatry program at Johns Hopkins Hospital, then became a professor of psychiatry at Johns Hopkins University. He wrote the first English language textbook on child psychiatry in 1935.
In 1938, during his study of 11 white, upper-class children, Kanner noted irrepressible behavioral tendencies and a severe neurodevelopmental aloneness among the small group. Prevailing thinking at the time advised that these children be diagnosed with childhood schizophrenia. Kanner, however, challenged this norm by diagnosing them with a new disorder of his own creation, Infantile Autism. Infantile autism, as described in his 1943 seminal paper, Autistic Disturbances of Affective Contact, quickly established Kanner as an imposing figure in childhood psychiatry. Although Kanner’s narrowly defined disorder only applied to a small population of young children, it described a well-recognized condition among children at the time. For the field of autism, this was pioneering research resulting in a landmark discovery.
Hans Asperger, born in Austria in 1906, was a prolific psychiatric researcher, authoring over 300 research articles during his lifetime. Asperger was an unassumingly curious yet aloof clinician who personified the eponymous syndrome he was about to discover. He often studied his patients while they exercised, played, and delved deeply into their interests, all of which were encouraged at his prestigious University of Vienna Hospital Children’s Clinic. There, Asperger and his team studied over 200 precocious children whose unusual infatuation with social structure was punctuated by high intelligence and obsessive interests. Yet curiously, these young prodigies were clumsy, socially awkward, and struggled with simple directions and basic life skills. Asperger named his disorder Autistic Psychopathy, a condition far more prevalent and notably less severe than Kanner’s infantile autism. Unfortunately, Asperger would soon be swept up by the Nazi party, leaving his research and findings lost for the next 32 years.
Today, Asperger and Kanner are viewed with differing degrees of controversy. Asperger for the continuing ambiguity regarding his relationship with the Nazis during WWII – although research has surfaced that allegedly exonerates Asperger of wrongdoing, at least to some extent. Kanner for his alleged self-serving narrow definition of infantile autism, which greatly limited ongoing autism research for decades; as well as his claim that “refrigerator mothers” caused autism to some degree, a damaging claim that was exaggerated and popularized before being proven wrong and rejected.
In 1943, Kanner indicated that a lack of parental warmth existed among parents of autistic children. He then expanded upon this concept, resulting in what we now know as the Refrigerator Mother theory. This theory claimed that cold and distant parents, particularly mothers, raised their children in harsh “refrigerators that never fully defrosted,” resulting in a dynamic that developed into infantile autism. Kanner’s claims were then exaggerated by others, leading to more extreme forms of treatment for the disorder. The apex of this exaggeration began in 1944, when Bruno Bettleheim, then Director of the Sonia Shankman Orthogenic School at the University of Chicago, operationalized Kanner’s theory into a full-scale treatment and development program. Bettleheim’s treatment process began with a “parentectomy,” which separated autistic children from their parents. Then, children “restarted their ego development process” in an allegedly warm and creative environment, which Bettleheim claimed would ultimately cure their condition. Students at his school reportedly spent time in a comfortable physical environment. They were free to paint their rooms, wander freely, and engage in numerous creative and educational activities of their choosing.
Although the Orthogenic School sounded uplifting compared to the asylum experience, Bettleheim’s promised cures were never proven nor achieved. Still, he frequently claimed that he cured numerous children during television appearances and in multiple publications, describing his program and school as a profound success. Bettleheim continued this misleading media campaign, popularizing the refrigerator mother theory as the leading cause of infantile autism through the mid-1960s. However, in 1997, seven years after his death, numerous sources accused Bettleheim of fraud, plagiarism, repeated physical abuse of students, and misrepresenting his education and credentials. Although colleagues and university staff were allegedly aware of Bettleheim’s abuse of students at the time, no punitive action was ever taken against him. As a result, he remained the Director of the Orthogenic School until his retirement in 1973. Bettleheim also remained a Professor of Psychology at the University of Chicago from 1944 through his retirement in 1973.
From Myth to Science – Autism, Parents and the DSM
In 1952, the American Psychiatric Association published the first edition of its Diagnostic and Statistical Manual (DSM-I) for use by psychiatrists across the US. Modeled after the existing World Health Organization’s International Classification of Diseases 6th Ed. (ICD-6), this 132-page manual cataloged and formalized 102 disorders. Among those disorders, developmentally disabled people were categorized as schizophrenic reaction, childhood type, which was defined vaguely, leaving much to the psychiatrist’s imagination. The entire manual was criticized for its vague descriptions, lack of scientific validity, and lack of utility in psychiatric practice. Despite the criticism, the DSM-I was an initiating first step toward standardization and scientific reliability throughout the field of psychiatry.
In 1964, Navy Psychologist Bernard Rimland, motivated by the birth of his autistic son, published a theory identifying autism as a condition based on genetics and neurology. Building his theory explicitly on valid scientific research, he directly challenged Bettleheim’s refrigerator mother theory and campaign, ultimately rejecting the concept entirely. Notably, Rimland’s rejection of this theory, a model that he credited to Bettleheim rather than Kanner, did little to tarnish Kanner’s credibility or professional standing. Rimland’s writings indicate a reverence for and friendship with Kanner, which was likely preserved by assigning ownership of the refrigerator mother theory to Bettleheim.
Rimland’s theory and rejection presented quick relief to countless parents across the autism community, who then bestowed considerable recognition on him and his efforts. This group found empathy and leadership in him and his extensive research, especially as a parent to an autistic child himself. Having established him as their trusted authority, this group empowered him in 1965 to found the parent advocacy organization, the Autism Society of America (ASA). Rimland then established the Autism Research Institute (ARI) in 1967 to engage in extensive autism research, data collection, and search for a cure. Rimland, devoted to the field and the community, inexhaustibly led high-profile projects, advocacy, and research until his death in 2006.
Throughout the 1980s and 1990s, Rimland’s drive for a cure likely inspired him to support several questionable treatments, which impacted his reputation and credibility. In a notable example, Rimland supported a little-known theory linking childhood vaccinations with autism, raising the profile of this concept and its creator. This linkage would gain momentum in 1998 when now-discredited Andrew Wakefield published a study linking the measles, mumps, and rubella (MMR) vaccine to childhood autism, a theory Rimland, again, strongly supported. In addition, Rimland publicly supported Ole Ivar Lovaas’ applied behavioral analysis (ABA) theory and therapeutic model. Lovaas, quoted in a 1974 interview as saying that autistic children “are not people in the psychological sense,” imbued his ABA therapeutic model with instances of physical and emotional abuse. Lovaas referred to this abuse with the Behavioristic term “Aversives,” examples of which included: slapping the child, patient isolation, electro-shock therapy, screaming at the child, humiliating the child, and other techniques viewed as violent and unacceptable by today’s standards. In his dogged pursuit of a cure, Rimland would continue supporting other now-discredited treatments, such as orthomolecular medicine, chelation therapy, and facilitated communication therapy.
In 1968, during Rimland’s rise, the revised DSM-II was published in reaction to the criticisms of the DSM-I. This manual, published at the peak of Bettleheim’s campaign against callous parents, now included some diagnostic and causal descriptions derived from the refrigerator mother theory. In addition, this edition still had a vague definition of the now condensed schizophrenia, childhood type, providing little scientific advancement for the developmentally disabled condition. The edition included only subtle expansions, eliminating the psychodynamic term reactive, and was more aligned with the newly revised WHO IDC-8. With only slight improvements from the DSM-I, it was received with a similar lack of fanfare. Nonetheless, the field of psychiatry was attempting to create a more valid and scientific grounding for itself.
During the late 1960s through the 1970s, government and healthcare leaders became increasingly critical of the vague, outcome-averse psychoanalytic theories and treatments central to psychiatry. A similar criticism had grown among the general public and was also shared by several psychiatrists. Consequently, the field of psychiatry was losing financial support and patients, the latter increasingly seeking newly minted psychologists and counselors who could provide the same service for far less cost. The DSM-III, created in response to this criticism and the resulting loss of credibility, marked a turning point for psychiatry. Masterminded by the APA’s renowned psychiatrist Robert Spitzer, the much-expanded and scientifically reliable 494-page DSM-III, published in 1980 and revised in 1987, was a scientific boon for the field. The DSM-III included a common language and reliable classification system, replaced vagueness with validated and scientific diagnostics, and invariably put the MD back into psychiatry. Then by doing the latter, Spitzer was able to reposition the field away from the mystical art of psychoanalysis, to become the diagnostic gateway to the pharmaceutical industry.
In the DSM-III, Kanner’s narrowly defined infantile autism was finally added to the new category, pervasive developmental disorders. In addition, the mental disorder childhood onset pervasive developmental disorder (COPDD) was also added to diagnose autistic children over 30 months of age. Infantile autism, residual state was added for diagnosed autistics who’d reached adulthood. Autism was now at least an officially diagnosable disorder. The DSM-III helped establish a more reliable and valid psychiatric field and, although still receiving some general criticism, changed psychiatry moving forward.
The scientific rigor reflected within the DSM-III was accompanied by a new, more scientific paradigm spreading among psychiatrists, notably exemplified by Lorna Wing. Driven by her daughter Susie’s infantile autism diagnosis, Lorna Wing, a British psychiatrist, led prolific research and development efforts to advance autism care and research. Noticing sparse support resources for autistic children like Susie, Lorna helped found the Autistic Children’s Aid Society of North London in 1962 (Now the National Autism Society), supported the founding of the Society School for Autistic Children in 1965 (an example of autism education for the US), and participated in founding the first residential community for autistic adults in Europe in 1972. Much of Wing’s copious research published from 1964 through 2002 contradicted Kanner’s earlier findings and the narrow diagnostic criteria he has so resolutely defended.
Lorna made a vital and historic contribution to the field of autism by translating, then popularizing, Hans Asperger’s lost theory. Suspicious of the validity of Kanner’s claims, Lorna rediscovered Asperger’s research and findings, specifically those supporting autistic psychopathy. As a result, in 1976, Lorna employed her husband John, a multi-lingual professor of psychiatry, to translate Asperger’s pinnacle research paper, Autistic Psychopathy in Childhood, into English. Quickly recognizing the validity and direct relevance of Asperger’s work, Lorna endorsed and promoted Asperger’s theory. She then codified his research and the condition, Asperger’s Syndrome, in her paper, Asperger’s Syndrome: A Clinical Account.
During this period, Lorna campaigned to expand Kanner’s narrow and rigid definition of autism to a more inclusive autism spectrum, incorporating Asperger’s broader and more dimensional criteria. In 1987, recognizing Wing’s prowess in the field, Robert Spitzer asked her to help develop the revised DSM-III-R. Lorna agreed, resulting in Kanner’s infantile being dropped from the newly named autistic disorder, and the inclusion of greatly expanded diagnostic criteria that incorporated Asperger’s research. With diagnostic criteria now broadened and inclusive of children and adults, those who Kanner’s narrow definition had left out were now being diagnosed. The widespread rise in autism diagnoses resulted in a significant expansion of autism services.
Under the direction of Allen Frances, the DSM-IV was published in 1994 after six years of development. This edition was built on the scientific framework of the DSM-III, yet expanded to 886 pages, including 410 disorders. The new DSM-IV, and to some degree the DSM-III before it, was now a widely used and credible psychiatric resource accessed regularly for governmental policy development, healthcare research, legal support, and other related professional endeavors. Due primarily to Lorna Wing’s lobbying, and despite various concerns from the DSM-IV task force, Asperger’s syndrome, formally named Asperger’s disorder, was included in the DSM-IV. Patients with autism-like characteristics could now be diagnosed with one of four pervasive developmental disorders (PDD): autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and the catch-all pervasive developmental disorder – not otherwise specified (PDD-NOS). Due to this increasingly inclusive list of disorders and expanded diagnostic criteria, more diverse people were being recognized and diagnosed. As with the DSM-III, this continued to expand access to the support services they needed.
The revised DSM-IV-TR (2000) made few alterations from the DSM-IV; however, two of these changes pertained to autism and the four PDD. First, the definition and criteria of PDD-NOS in the DSM-III included a grammatical error that caused significant diagnosing errors, which was remedied in this revision. Secondly, due to continued disagreement and ambiguity regarding Asperger’s disorder and diagnostic criteria, the disorder’s content was almost entirely rewritten.
The DSM-5, published in 2013, included significant changes in structure and content, all made to achieve greater scientific validity and reliability. This edition marked the most ambitious DSM, taking over ten years to develop the 947-page manual. More specifically, the DSM-5 entirely reconceptualized autism by dropping the PDD category, the four diagnoses, and all evaluative measures. These were replaced with autism spectrum disorder (ASD), a new category encompassing the previous four disorders and supporting criteria. Per the APA website description,
Autism spectrum disorder is a new DSM-5 name that reflects a scientific consensus that four previously separate disorders are actually a single condition with different levels of symptom severity in two core domains. ASD now encompasses the previous DSM-IV autistic disorder (autism), Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified. ASD is characterized by 1) deficits in social communication and social interaction and 2) restricted repetitive behaviors, interests, and activities (RRBs). Because both components are required for diagnosis of ASD, social communication disorder is diagnosed if no RRBs are present.
The new ASD diagnostic criteria require that the patient meets criteria in both Social Communication and RRB categories, as well as having symptoms present during early development. Diagnosed patients are then categorized into 1 of 3 levels of needed support: Level 1: requiring support; Level 2: requiring substantial support; and Level 3: requiring very substantial support. This new naming convention and criteria make the descriptors Asperger’s disorder (syndrome) and high vs. low functioning obsolete. Still, likely due to the impact of Asperger’s landmark inclusion in the DSM-III-TR, a notable amount of the autism community still claims their Asperger’s Syndrome diagnosis and the affectionate descriptor, Aspie.
The revised DSM-5-TR, published in 2020, included only minor semantic changes to ASD. This revision’s disorder definition, diagnostic criteria, and three needed support measures remain intact.
The Path Forward
Presently, with the efforts of those psychiatrists listed above, a 2020 Centers for Disease Control study found 1 in 36 children in the US have been diagnosed with autism. Up from 1 in 150 children in 2002, this rise in diagnoses is testimony to the determination of the autism community. Most notably, the expansion of scientifically valid psychiatric practices, valid diagnostic criteria within the DSM, and nationwide autism awareness and acceptance efforts have been core to this growth. However, with numerous children and adults going undiagnosed and unserved, more must be done – but where to begin?
Presently, little research has been completed to date on autism in adulthood. As a result, far less is known about these adults’ lived experiences, needs, and potential avenues of support. A slight uptick in this research is beginning, but much more needs to be done. A 2017 study by the CDC identified 5.5 million adults diagnosed with ASD in the US. Although the CDC methodology is likely sound, this number seems far underrepresented compared to the much larger number of children with ASD.
In addition, a 2020 CDC study revealed that boys are diagnosed with autism more than girls at a nearly 4 to 1 ratio. A similar ratio exists among the adult population within the US. As girls are likely an underrepresented group, more research must examine this underrepresentation in search of causal factors. In addition, more must be done to raise awareness and acceptance of female autistics, helping to identify and support those who have gone undiagnosed.
Lastly, there is a broad need for additional autism research and advocacy in underrepresented and undersupported minority groups. Groups excluded from autism diagnoses due to race, gender identity, sexual orientation, age, physical ability, language, immigration status, and other classifications must be acknowledged and supported at a greater level.
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