How society has understood an interacted with neurodivergence over the years.
Early Understandings of Neurodiversity
Prior to the 1900s, there was little understanding or discussion of neurodiversity as a concept, but that doesn’t mean that people didn’t experience certain behavioral and cognitive differences before then.
For example, the initial record of attention deficit can be traced back to 1775 when the German physician, Melchior Adam Weikard, published a book in which he described what he called ‘Mangel der Aufmerksamkeit/Attentio volubilis’.
‘Mangel der Aufmerksamkeit’ means lack of attention, in English, whereas the Latin term ‘volubilis’ comes from the verb ‘volvere’ meaning to turn. Its literal definition is ‘easily rotating’, which can be extended to mean ‘fickle’ or ‘changing’. This image fits with the descriptions that many people with ADHD give regarding their attention and ideas; constantly rotating and never settling for long. In later books, Weikard also described how sensory stimuli capture a patient’s attention and divert him from his thoughts.
Similarly, behaviors consistent with autism were described long before the diagnostic category was officially named and defined in the 1940s.
The Wild Boy of Aveyron
Terms like “idiocy” and “imbecility” can be found in the Oxford English Dictionary as early as the 16th century.
However, several cases show that some people who were deemed “idiots” had specific challenges with social communication – consistent with autism – rather than a general cognitive impairment.
One such famous case is Victor, the Wild Boy of Aveyron, a supposed feral child who was discovered in the woods near Aveyron in southern France in the 1800s. Victor was around twelve years old and went on to be studied extensively, including by French physician, Jean-Marc-Gaspard Itard.
Believing he could teach Victor things such as social awareness, speech comprehension, and literacy, Itard came up with an intensive educational program. Unfortunately, even after five years of continuous effort, Victor could only speak, read, and write a few words and phrases, and his social skills remained limited.
While the results were disappointing, Itard’s work was later advanced through the work of his student, Édouard Séguin, a pioneer in the education of children with intellectual disabilities.
Eugen Bleuler: Coining ‘Autism’
In the early twentieth century, Swiss psychiatrist Eugen Bleuler spent his time studying several psychiatric disorders throughout continental Europe. One of these disorders would come to be known as schizophrenia.
At the time, it was still called ‘dementia praecox’ – a term that had been proposed by German psychiatrist Emil Kraepelin. Bleuler eventually coined the term schizophrenia in 1908, and he defined it as a group of diseases rather than just one disorder. He laid out the main symptoms as the four A’s: associations, affect, ambivalence, and autism.
He used the symptom ‘autism’ to describe the social withdrawal and detachment from reality often seen in people with schizophrenia. In Greek, ‘autós’ means self, and with it, Bleuler alluded to the extreme withdrawal within self that he observed in his patients. He called this way of being ‘autistic thinking’ and defined it as self-centered rumination and retreat into fantasy.
By doing so, the term autism was coined.
Grunya Sukhareva
In 1924, Russian psychiatrist Grunya Efimovna Sukhareva, met a young boy at a Moscow clinic for an evaluation.
The child seemed to differ greatly from his peers. He had no interest in others, and he never played with toys. Having taught himself to read at age five, he instead passed his days reading everything he could get his hands on.
At the time, ‘autistic’ was still a relatively new adjective. At first, Sukhareva used it in the same way Eugen Bleuler did, but she eventually tried to characterize it more fully. After seeing several more boys with what she described as ‘autistic tendencies’, she published a paper in which she basically described the criteria for autism that is currently used in the DSM-5 – a handbook used by mental health professionals to diagnose and classify mental health conditions.
Nonetheless, it would take nearly a century before Sukhareva’s work would be recognized on a larger scale.
Hans Asperger and Leo Kanner
In the 1940s, two pioneering figures in the field of neurodiversity emerged: Hans Asperger and Leo Kanner. Both were Austrian-born psychiatrists.
Kanner was one of the first to recognize autism as a distinct condition separate from schizophrenia, which he described in his paper Autistic Disturbances of Affective Contact. It quickly became a classic in the field of clinical psychiatry.
One year after Kanner’s iconic article on autism, Asperger described what would be known as Asperger Syndrome, a mild form of autism characterized by difficulties with social interaction and communication. Kanner believed that autistic individuals had unique gifts such as exceptional memory recall or mathematical ability. He also pointed out that their distinctive characteristics were already familiar in stock characters from pop culture like the ‘absent-minded professor’ and Count Bobby, a fictitious aristocrat who was the butt of many Austrian jokes.
Of course, many of their findings had already been described by Grunya Sukhareva two decades earlier.
The Eugenics Movement and the Nazi Aktion T-4 project
In the late 19th century, attitudes towards disability worsened as the eugenics movement gained a foothold in society.
Inspired by Charles Darwin’s theory of evolution via natural selection, Francis Galton coined the term ‘eugenics’ in 1883. The term originated from the Greek word ‘eugenes’, which meant ‘good birth’. Galton’s theory was based on the premise that human abilities are hereditary, and he wanted to improve the human gene pool through selective breeding.
There were two forms of eugenics: one promoted the reproduction of desirable traits whereas the other favored restricting the reproduction of negative ones.
The devastating impact of the eugenics movement is exemplified by Nazi Germany’s Aktion T-4 project which was aimed at removing people with disabilities from the gene pool.
Those deemed “unfit” for society were sent to euthanasia centers where they were subjected to medical experiments or received what the Nazis called ‘final medical assistance’ – a euphemism for death by lethal injection or gas chamber.
An estimated 275,000 people with disabilities were killed.
The Refrigerator Mother Theory
‘The refrigerator mother theory’ was a widely accepted belief in the 1950s and 1960s that autism was caused by cold, distant parenting.
In his papers on autism, Leo Kanner claimed that most autistic patients had been deprived of emotional warmth. He also observed that many parents had milder, but similar characteristics as their children. In particular, the parents he observed were perfectionistic and had limited interest in social interactions.
Did this mean that their parenting style had caused their child’s condition? According to psychologist Bruno Bettelheim, the answer was yes!
As a fervent champion of ‘psychogenesis’, he believed that autism was the result of maternal aloofness – a ‘refrigerator mother’. Psychogenesis refers to the idea that psychological factors can cause or contribute to a disorder
Through his book The Empty Fortress: Infantile Autism and the Birth of the Self, and the subsequent heavy promotion of it via interviews on national prime-time television shows and in popular magazines, the concept of ‘the refrigerator mother’ soon turned into a popularly accepted idea.
This misguided notion had devastating consequences for many families; mothers were blamed for their child’s condition and felt immense guilt and shame.
Bernard Rimland - Debunking the Refrigerator Mother Theory
Research psychologist, Bernard Rimland, played an important role in shifting the understanding of autism from being psychogenic to biogenic. As the father of an autistic child, he had a deep-seated desire to uncover the true causes, and he rejected the idea that poor parenting was at fault.
After founding the Autism Research Institute, he published the book, Infantile Autism, in which he established autism as an inborn condition rooted in genetics and neurology.
Confronted with the daunting prospect of eternal institutionalization for children like his son, he teamed up with psychologist Ole Ivar Lovaas to develop innovative strategies to help autistic children thrive by training them to integrate seamlessly into society, just like their peers.
Because autism was still seen as a rare condition, research was virtually stagnant at the time. Through crowdsourcing the search for effective treatments, Rimland gave parents of autistic children new hope.
However, critics have proposed that his unwavering promotion of biomedical “cures” ultimately proved to be a double-edged sword as it kickstarted an endless quest for a cure.
Ole Ivar Lovaas and the ABA Approach
When Norwegian-American psychologist, Ole Ivar Lovaas, began studying autism in the 1960s, the dominant perspective on autism held that it was a form of neurosis.
The few autistic children who received treatment were given psychotherapy, which often had little effect. Others were misdiagnosed as schizophrenic or mentally disabled and institutionalized.
Lovaas, on the other hand, took a behaviorist approach. He proposed the use of Applied Behaviour Analysis (ABA), proclaiming that autism could be improved through rigorous behavior modification.
Lovaas’ work was highly influential in shaping public opinion, and the program he devised, known as the Lovaas model, became widely used as a form of therapy.
For the next two decades, he published numerous journal articles, including one in which he claimed that ABA therapies helped autistic children to become “indistinguishable from their normal friends.” Today, such statements have caused an uproar, as critics argue that it overly focuses on compliance. Some people, such as autistic writer and activist, Amy Sequenzia, have even labeled it “autistic conversion therapy.”
In a 1974 Psychology Today interview, Lovaas sparked further controversy when he discussed his use of aversive techniques, including the use of electroshocks. While the current Lovaas model uses only positive reinforcements to reward appropriate behaviors, the method remains controversial due to its focus on behavioral modification.
Don’t Mourn for Us and Driven to Distraction
Temple Grandin and Donna Williams were the first autistic people to write for a broad audience. Grandin’s autobiography, Emergence: Labeled Autistic was first published in 1986, and Williams’ Nobody, Nowhere, was first published in 1991. Both memoirs broke new ground by showing the world that autistic people could articulate their own experiences and had rich inner worlds, but they were ultimately geared towards a neurotypical audience.
Then Jim Sinclair’s monumental 1993 essay, Don’t Mourn for Us, came along. Challenging the notion that autism is a tragedy that inevitably results in parental grief, Sinclair proposed that the grief does not stem from the child’s autism in itself, but rather from the perceived loss of the normal child the parents hoped to have.
One year later, psychiatrist Ed Hallowell’s book Driven to Distraction, helped increase awareness and understanding of ADHD. Filled with anecdotes and practical advice, the book quickly became a bestseller and had a significant impact on the public perception of ADHD.
Judy Singer - Coining the Word ‘Neurodiversity’
In the late 1990s, Australian sociology student, Judy Singer, stumbled upon a few disability studies when she realized a life-changing fact: she too had a “disability” in the family. More specifically: her.
At the time, Singer had not even heard of autism or Asperger’s Syndrome. Excited to uncover more, she started a literature search to find the experts. Unfortunately, she found nothing.
Realizing she might have to be the expert herself, she signed up to write a thesis. Singer’s work was the first academic sociological research into the growing Autistic Self-Advocacy Movement.
She published her paper in 1998, and in it, she used the term ‘neurodiversity’, essentially coining it. She also proposed that the “‘Neurologically Different’ represent a new addition to the political categories of class/gender/race.”
Singer had been corresponding with a writer named Harvey Blume, who further popularized the word neurodiversity in a 1998 issue of The Atlantic by stating, “Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?”
The “Ransom Notes” Affair
In 2007, the New York University Child Study Center (NYU CSC) launched the “Ransom Notes” campaign – a controversial advertising stunt that greatly impacted the course of the Neurodiversity Movement.
Presented as a tool to raise awareness of various childhood psychiatric disorders, such as ADHD, autism spectrum, depression, and bulimia, the campaign consisted of images of children with messages written in a style meant to resemble a kidnapper’s ransom note.
One example: “We are in possession of your son. We are making him squirm and fidget until he is a detriment to himself and those around him. Ignore this and your kid will pay…ADHD.”
Due to the campaign’s stigmatizing nature, the backlash was swift and came from all over the world. With the help of the internet, Ari Ne’eman, founder of the Autistic Self Advocacy Network (ASAN), reached out to other disability rights organizations to successfully shut down the campaign.
Although the neurodiversity movement had already existed for some time, the effective protest increased its visibility. It also marked the evolution from a paternalistic model of advocacy to one of self-advocacy.
