Autistic, Not an Idiot: The Evolution of the Autism Diagnosis
Tags: Diagnosis, Autism, Autism Spectrum Disorder, Autistic

Autistic people did not just appear overnight. We did not call them Autistics. Instead, we used other names like odd or unusual. So, when and where did the label of Autism come from? I was curious and started digging. Here is what I learned.

Image of one person swimming against the current while all other people in the image are swimming in the same direction as the current. Image by Prawny from Pixabay

Not an “idiot.”

Was Leonardo da Vinci Autistic? What about Albert Einstein? Looking back at their traits and behaviors, we might now think that they might have been. I have read countless examples of historical figures showing autistic characteristics. The earliest example I read about was from 1799³. It was about a French boy named Victor, who liked to walk around naked in the forest³. At the time, he might have been called many things but not autistic³.

According to this Smithsonian Magazine article³, Dr. Samuel Gridley Howe from Boston documented autistic traits as early as 1846. Dr. Howe was years ahead of his time and an early proponent of the rights for the disabled³. He is known for opening the Perkins School for the Blind in Watertown, Massachusetts, in 1832³.

In 1846, Howe implemented a mental health survey documenting hundreds of individuals exhibiting autistic traits³. One of his subjects was a man named Billy, who was 59 when Howe assessed him³. Howe described Billy as someone with severe “limitations in spoken language” but “superior cognition” in musical ability³. Billy was known for his “perfect musical pitch and knew more than 200 tunes”³.

Before Howe completed the health survey, the individuals such as Billy were called “idiots”³. It is hard to believe, but the word “idiot” in those days was not used in the way we used it today. Back then, “idiot” was used for someone with “deliberate sensitivity” and “intellectual disability”³.

Howe, along with his colleague, Dr. Samuel Woodward, differentiated autistic traits from “idiots” at the time. Dr. Woodward was the head of the Worcester Lunatic Hospital in Massachusetts³. During the same timeframe, Dr. Woodward identified a group of children in his hospital that would not fit the definition of “idiots”³. Instead, he described them in the following manner³:

“Little patients with intelligent faces, well-formed bodies, good development of the head and active minds. Their movements are free, easy, and graceful. Many of them are sprightly, even handsome. They are generally restless, irritable, and extremely mischievous. They rarely are able to speak. No person familiar with these cases would be likely to mistake them for idiots” (Donvan & Zucker, 2016).

Although Howe and Woodward could not identify the root causes, they managed to identify common traits and behaviors that could help differentiate autistics from those who suffered from other disabilities³.

From Autoerotism to Autism

Autism entered the picture when Swiss psychiatrist Dr. Eugen Bleuler introduced it in 1911⁴. Bleuler derived Autism from the word “Autoerotism,”⁴ which was first introduced by an English physician Havelock Ellis⁸, and later adopted by Sigmund Freud in 1905⁴. Freud described “Autoerotism” as “hallucinatory thinking in conjunction with self-soothing in a stage of thinking which preceded the infant’s engagement with external reality”⁴.

Bleuler adopted the word “Autism” to describe the worst cases of schizophrenia⁴. Bleuler thought of Autism as “infantile wishes to avoid unsatisfying realities and replace them with fantasies and hallucinations”⁴. In the UK, Autism was deemed hallucinatory up until the 1950s⁴. Other researchers challenged this hallucinatory assumption of Bleuler, which resulted in a complete change of the description and meaning of Autism by the 1970s⁴.

Infantile Autism as Childhood Schizophrenia

Meanwhile, in the US, Dr. Leo Kanner of Johns Hopkins University in Baltimore, Maryland, gave a first formal diagnosis of Autism to a patient named Donald Gray Triplett of Forest, Mississippi⁶. In the 1940s, Kanner thought of Autism as “disturbances of affective contact,” but by 1956, he switched to the term “infantile autism”⁷. Like Bleuler⁴, Kanner also thought that “infantile Autism” should be categorized under childhood schizophrenia⁷.

Authors John Donvan and Caren Zucker have published Triplett’s story in a book titled “In a Different Key.” Donvan and Zucker also wrote the Smithsonian Magazine article mentioned earlier³.

Since his work was published worldwide, Kanner is generally given credit for discovering Autism³. However, Kanner believed that Autism had most likely existed before the recognition he brought to the condition³.

Asperger’s Syndrome

Kanner continued his work under the label of “infantile autism” in the US. Meanwhile, on the other side of the Atlantic, a Viennese psychiatrist, Hans Asperger, made his own discovery. In 1944, Asperger published a study describing the behaviors and abilities of four boys he observed⁷. A first, he called the condition “autistic personality disorders in childhood” and later called it “ autistic psychopathy”⁷.

Kanner and Asperger did not realize that they were working on the same condition⁷. Kanner’s patients had more severe symptoms, lower IQ and nonverbal; while, Asperger’s subjects had average or higher IQ⁷. Asperger described his patients as “little professors” and highlighted their abilities and strengths⁷.

Unfortunately, Asperger’s work was not widely published. It did not gain recognition on the international level until the British researcher Lorna Wing introduced it in 1981 in her publication titled “Asperger’s Syndrome: A Clinical Account”⁷. Wing proposed discontinuing the use of the term “autistic psychopathy” and renamed it “Asperger’s Syndrome” because Wing suspected that Hans Asperger himself was also an autistic⁷.

Lorna Wing continued to bring awareness to Asperger’s work. Meanwhile, countries worldwide started to adopt the American Psychiatric Association’s diagnostic manual. This manual is titled Diagnostic and Statistical Manual of Mental Disorders (DSM). The second edition of the DSM (DSM-II) classified “infantile Autism” under childhood schizophrenia⁴.

Pervasive Developmental Disorders

When the third edition of the DSM (DSM-III) was published in 1980, the childhood schizophrenia category was removed from the manual⁴. Autism was categorized under a new class called the “Pervasive Developmental Disorders,” which was further divided into four subcategories: Infantile Autism, Childhood-onset Pervasive Developmental Disorder, Residual Autism, and an Atypical Form⁴.

Autism, Asperger’s, and PDD-NOS

By the early 1990s, Lorna Wing’s publications about Asperger’s Syndrome gained attention⁷. With this recognition and additional research, the DSM-IV, published in 1994, brought more changes to the Autism diagnosis. Autism was still categorized under “Pervasive Developmental Disorders”; however, there now were three subcategories: Autistic Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS)⁵.

Kanner and Asperger thought that their patients did not share a common condition⁷. It was Wing’s work that provided enough evidence to show the overlap while also highlighting the differences between Infantile Autism and Asperger’s Syndrome⁷.

Autism Spectrum Disorder (ASD)

The changes to the Autism diagnosis criteria did not stop with DSM-IV. The most current, 5th, edition of the DSM has dropped the subcategories and grouped all three forms under Autism Spectrum Disorder (ASD). According to the DSM-5, three deficits in social communication and interaction plus two types of restricted, repetitive behaviors must be present to diagnose ASD².

The reason for grouping the three forms under one spectrum disorder was to eliminate the clinician’s difficulties in assigning the appropriate subcategories⁷. Instead, the clinicians now specify the severity of the Autism for each criterion¹. The severity is designated as Level 1, 2, or 3. Patients on the lower levels require less support, and higher levels need substantial help¹. For more information, see the guidelines published by Dr. Laura Carpenter from the Medical University of South Carolina¹. The document describes the social communication, restricted interest, and repetitive behaviors associated with each severity level¹.

What is in the name?

There is no doubt that the label for Autism and its meaning has evolved over the years. The name itself is not essential but having a consensus on diagnostic criteria is critical. No matter what we call the condition, it does not change the difficulties faced throughout life by those on the spectrum. Most in the community would agree not to get stuck on the label and instead focus on the individuals' strengths. At the same time, a name is needed for a variety of reasons. A clearly defined name for the condition along with diagnostic tools helps with early detection and interventions. Some use the label to understand themselves better. While others use it to connect with their tribe. It does not matter what we call Autism; at the end of the day, we should use the name to improve the lives of those on the spectrum. We should all help them reach their full potential, no matter how different they may be.