By Lauren Wagner
The Neuroscience of Autism, edited by Rajesh Kana, is the most recently published textbook on the history, characterization, and neuroscience of autism spectrum disorder. In Knowing Neurons’ new “Autism Book Club” series, Lauren Wagner walks us through chapters of the book with additional commentary and context. Let’s start with chapter 1: “History of Autism.”
It is not uncommon that the same scientific discovery or epiphany occurs more than once, even simultaneously, at the hands of different individuals. At the same time as Isaac Newton formalized his calculus in the 17th century, the mathematician William Gottfried Leibniz independently set forth the same mathematical ideas. And, although Charles Darwin holds near-universal credit for his theory of natural selection in the 19th century, his younger colleague Alfred Russel Wallace independently developed the same theory for a mechanism of the evolution of species.
In the 1940’s, two very similar developments were occurring in parallel in the field of psychiatry. Leo Kanner, an American psychiatrist at Johns Hopkins, had been studying a young, peculiar child known as Donald T. He displayed savant-like skills in music and arithmetic, with perfect pitch and the ability to perform complicated mental calculations beyond his age, or even beyond typical ability. Along with these abilities, Donald was also socially withdrawn, disengaged, and prone to overstimulation (Donovan & Zucker, 2010). At first, Kanner believed that Donald was exhibiting what he called “childhood schizophrenia”, although no single diagnosis seemed fit quite right. In the years that followed, Kanner encountered several children with an uncannily similar collection of symptoms. He began to describe these children as socially “autistic”, giving rise to a novel psychiatric diagnosis described in Kanner’s publication “Autistic disturbances of affective contact”. Although the term “autistic” had been used by psychiatrists throughout the early 20th century, the young Donald T was recorded as Case #1 of the diagnosis as we currently know it (Kanner, 1943).
Around the same time, the Austrian pediatrician Hans Asperger was studying a group of autistic children in Vienna whom he referred to as his “little professors” for their remarkable intelligence (Golt & Kana, 2022). Asperger’s characterization of his patients’ symptoms was markedly more positive than Kanner’s. His definition of autism focused on the remarkable intelligence and above-average language skills that he observed in his little professors alongside their social and emotional difficulties, motor clumsiness, and highly specific interests (Wing et al., 2011). Kanner and Asperger held quite differing attitudes about their patients’ conditions, with Kanner’s outlook more negative than Asperger’s. Today, we recognize that Kanner and Asperger were actually studying patients that would fall under a single autism diagnosis. We still see ripples of Asperger’s more positive attitude towards autism: until 2013, Asperger’s Syndrome was a standardized diagnosis for “higher functioning” autism, and even today many individuals and Internet communities still identify with the label.
The term “autism” comes from the Greek word autos (“self”), and refers to the tendency for autistic individuals to be more inwardly-focused rather than socially-focused. This attribute was recognized by both Kanner and Asperger in their earliest descriptions of the condition, and today is a core theory for why autistic children and adults tend to experience social difficulties. Additionally, Asperger and Kanner both believed that autism represented a cognitive difference rather than a cognitive impairment. In their heyday, Kanner and Asperger were certainly aware of each other’s work. But, despite the similarities, their differing perspectives on autism led them to believe that they were studying distinct populations (Asperger & Frith 1991). Later, in the 1980’s, the psychiatrist Lorna Wing realized that Asperger’s and Kanner’s accounts may have described patients that could be grouped along the same spectrum of symptoms. Wing’s work on autism led to an understanding based on three categories of symptoms that seemed nearly ubiquitous across individuals: social impairment, communication delay and impairment, and restricted and repetitive behaviors (Golt & Kana, 2022).
Today, autism is seen as a highly complex condition with a whole rainbow – or spectrum – of potential traits. The intensity of these traits can range from benign differences in how a person experiences the world, to impairments that can heavily affect quality of life. This highly inclusive view of autism is a relatively recent development, codified into mainstream psychiatric practices in 2013 with the publication of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (aka, the DSM-V; American Psychiatric Association, 2013). The DSM-V divided the core signs of autism into two main categories – Social Communication and Interaction Skills, and Restricted or Repetitive Behaviors or Interests – and some additional physical or behavioral symptoms are also considered quite common.
…the presence of a neurological difference, such as autism, does not imply the presence of a cognitive impairment.
The neurodiversity movement is here to stay and has inarguably improved the lives and self-image of countless individuals with autism. However, critics of the neurodiversity movement have pointed out that the movement tends to gloss over individuals that truly experience reduced quality of life because of their autism. For example, a subset of autistic people are somewhat or completely nonverbal and, therefore, experience difficulty when advocating for themselves. In extreme cases, these more vulnerable individuals require 24/7 care or support. A recent article published in The Lancet (Lord et al., 2022) is adding a new layer of subtlety to this conversation. In the Lancet article, Dr. Catherine Lord of UCLA and colleagues proposed the term “profound autism” as a way to help make sure that autistic people in need of accommodations and assistance are able to get the help that they need (Lord et al., 2021). And, importantly, the term “profound” is free of the judgement that is built into the darker words of autism’s past, such as “disability”, “mental illness”, and even “low-functioning”.
With autism diagnoses on the rise (CDC, 2022), it is now more important than ever to be careful about how our society discusses and categorizes autistic individuals. Although autism has experienced destigmatization in recent decades, researchers and clinicians are realizing that it may be harmful to group all autistic individuals together in every context. For example, although many autistic people do not consider themselves disabled, being able to claim disability status can sometimes allow individuals to receive accommodations for autism-related symptoms. Last year, a four-year-old autistic boy was denied a sensory accommodation to go mask-free on a flight because the airline did not consider autism a “disability”. As a result, the entire family was removed from the flight.
In an interesting twist to our story, the coining of the term “profound autism” may be bringing us back to where we began with Kanner and Asperger: with two forms of autism. However, we should not disregard the lessons learned from the neurodiversity movement. If there’s anything that the movement has taught us, it’s that the words that we choose matter. Autism is increasingly recognized as an incredibly complex condition with very diverse genetic and developmental causes (Muhle et al., 2018), which means that individuals on the autism spectrum are a very diverse group. Moving forward, it is up to us to carefully consider how the labels that we use may help or harm the communities and individuals who are in the most need of support.
Written by Lauren Wagner
Illustrated by Melis Cakar
Edited by Shiri Spitz Siddiqi, Amy Than, Melis Cakar
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596
Asperger, H., & Frith, U. T. (1991). ‘Autistic psychopathy’in childhood.
CDC. Autism Prevalence Higher in CDC’s ADDM Network. (2021, December 2). Centers for Disease Control and Prevention. Retrieved August 7, 2022, from https://www.cdc.gov/media/releases/2021/p1202-autism.html
Donovan, J., Zucker, C. Autism’s First Child. (2010, October 10). The Atlantic. https://www.theatlantic.com/magazine/archive/2010/10/autisms-first-child/308227/
Golt, J., & Kana, R. K. (2022). History of autism. The Neuroscience of Autism, 1.
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous child, 2(3), 217-250.
Lord, C., Charman, T., Havdahl, A., Carbone, P., Anagnostou, E., Boyd, B., … & McCauley, J. B. (2022). The Lancet Commission on the future of care and clinical research in autism. The Lancet, 399(10321), 271-334.
Muhle, R. A., Reed, H. E., Stratigos, K. A., & Veenstra-VanderWeele, J. (2018). The Emerging Clinical Neuroscience of Autism Spectrum Disorder: A Review. JAMA psychiatry, 75(5), 514–523. https://doi.org/10.1001/jamapsychiatry.2017.4685
Wing, L., Gould, J., & Gillberg, C. (2011). Autism spectrum disorders in the DSM-V: better or worse than the DSM-IV?. Research in developmental disabilities, 32(2), 768-773.