A brief history
And why did the name Asperger’s Syndrome come about, only to disappear more recently?
What are the key events in the timeline of autism ?
Why does autism exist within the field of psychiatry?
After all, it’s not a psychiatric condition, it’s not a mental disorder, and it’s not a disease.
Why is it called Autism?
The answers to all these questions, of course, lie in history
There have been a number of separate descriptions of autism around the world dating as far back as 1910, when the Swiss psychiatrist, Eugen Bleuler described a schizophrenic patient who had withdrawn into his own world. The term Bleuler used was, autism, and came from the Greek word ‘autós’ - meaning self. Bleuler was describing autism as
‘a morbid self-admiration and withdrawal within self’.
Two of the most well-known and influential, early researchers in the field were Leo Kanner and Hans Asperger. Kanner was an Austrian-American psychiatrist, who, in 1943, described autism in children. He talked about them having
“extreme autistic aloneness”, “delayed echolalia” and an anxiously obsessive desire for the maintenance of sameness”.
He also noted that these particular children often had high intelligence and an extraordinary memory. Kanner viewed autism as a
‘profound emotional disturbance, not affecting cognition’.
Under this influence, the Diagnostic and Statistical Manual of Mental Disorders (DSM) second edition (1952), defined autism as a psychiatric condition although it was listed as a form of childhood schizophrenia, which Kanner did not believe was the case.
Around the same time, in Vienna in 1944, a physician named Hans Asperger, published his own definition of “autistic psychopathy” based on his studies of four boys. (Incidentally, it is said that his definition was similar to that of a Russian neurologist named Grunya Sukhareva, in 1926.)
Asperger’s account had many similarities to Kanner’s, but emphasised children with certain abilities, such as grammatical language which was average or above average. However, Asperger's work was not widely recognised until after his death - one of the possible reasons for this may have been that his work was published in German.
In the meantime, Kanner’s work had become dominant in the English speaking world and autism continued to remain within the realms of psychiatry. Throughout the 1970s, two more greatly influential researchers, Lorna Wing and Judith Gould were, together, further defining and researching the prevalence of autism, as it had been thus far defined by Kanner.
They were aware that some of their patients did not fit into the existing categories of that time, which were autism and schizophrenia. Their patients did not have any obvious intellectual disabilities or delusions, but still needed help due to depression, profound difficulties with obsessive thinking and social interaction.
After coming across Hans Asperger’s research and roughly translating it into English, Wing was impressed by his detailed, sympathetic descriptions of his patients and the similarities between his descriptions and those in her own studies. At that time, the word autism was heavily stigmatised, being associated with ‘muteness and total social withdrawal’. In 1981, Wing introduced the English-speaking world to the little-known work of Hans Asperger, and in doing so, challenged the accepted, yet narrow boundaries of the Kanner model of autism.
In 1991, Uta Frith produced her authoritative translation of Asperger’s work, and Wing presented an extremely influential article, proposing the term Asperger Syndrome. So influential in fact, that Asperger Syndrome was included in both the International Classification of Diseases, tenth edition (ICD-10) in 1993 and the DSM-4 in 1994.
Wing and Gould broadened the definition of autism to one of a spectrum disorder; and one which did not always entail intellectual disability. Importantly, they showed that autism could exist in all ages and abilities, and their research also challenged the view that autism was rare (since proved to be correct).
They introduced something called the ‘triad of impairments’ which at that time, included social interaction, communication and imagination. These, together with a repetitive stereotyped pattern of activities, first defined autism as a syndrome (a group of symptoms which together are characteristic of a specific disorder).
The use of the term ‘spectrum’ to describe autism continued throughout the 1990s. After the Human Genome Project was completed in 2003, many other studies continued to search for a gene that could be associated with each of the five autism conditions of that time. Hundreds of genes were found - too many to assign to just five conditions - so a more ‘all-inclusive’ diagnosis was developed, ranging from the so-called ‘mild’ end of a spectrum to the ‘severe’ end.
In 2013, after several years of concern over a lack of consistency around how each type of autism was being diagnosed in different areas, and by different clinicians, the DSM-5 removed the term Asperger Syndrome. Instead, it introduced the diagnosis of autism spectrum disorder (ASD) which is also called autism spectrum condition (ASC) in some countries. This included the stricter criteria with which we are more familiar today.
Rather than using the DSM-5, some countries preferred to use the ICD-10 for the assessment of autism. Although they weren’t fundamentally so different from each other, the most recent ICD-11 has moved autism diagnosis a little further into to the 21st century. It now gives autism spectrum disorder its very own dedicated section and gives clinicians a little more leeway to assess the person’s traits and see if they match up to the diagnostic criteria.
Importantly, it introduces the much-needed distinction between autism with, and without intellectual disability, and is considered less culturally specific, allowing for more flexibility in different countries and cultures. For example, there is less emphasis on what games children might play, but rather how they follow or impose rules in those games. And finally, it also now acknowledges that adults and women may mask their autism traits.
Two other notable contributors to autism in the domain of psychiatry were Sula Wolff and Grunya Sukhareva. Sukhareva, a Soviet child psychiatrist, is considered to have written one of the earliest known detailed definitions of autism in 1925. Translated into German a year later, it shared many similar observations with both Kanner and Asperger. Sukhareve used the term ‘schizoid psychopathy, but she later replaced this with ‘autistic (pathological avoidant) psychopathy’.
Like Asperger, Sukhareve’s work went largely unnoticed until Sula Wolff, a German born, British paediatric psychiatrist translated it from German to English in 1996. Wolff herself had spent many years studying children with average or higher ability, alongside difficulties with social interaction, and noticed that they did not fit into the existing ‘triad of impairments’. Sometimes they displayed ‘exceptional gifts’.
Wolff was very much aware that, although these children were considered to be more ‘independent’, they struggled at school and therefore needed recognition and support. Her definitions very much aligned with those of Asperger Syndrome in those children who were considered ‘high functioning’ at the time.
Controversy over the name Asperger Syndrome began
even before the DSM-5 was released in 2013
People knew that the diagnosis of Asperger Syndrome was going to be removed and replaced, and many autistic people and carers were greatly concerned about the effects that this would have on their lives. There were worries over loss of services and insurance rights as well as concerns over the taking away of the name itself.
After over two decades of use however, many autistic adults were extremely comfortable with the name Asperger Syndrome, as they felt it had given them a sense of identity and belonging.They felt as though this identity was being unfairly taken away from them.To this day, many adults who were diagnosed using the DSM-4, still identify strongly as Asperger’s or Aspies.
Asperger Syndrome (AS) which is also sometimes written as Asperger’s Syndrome, became synonymous with a form of so-called ‘high functioning’ or ‘mild’ autism, with an intelligence considered to be average or above. These days, the terms ‘high functioning’ and ‘mild’ are no longer considered appropriate or acceptable, because they do not describe, or encompass the true complexity and individual challenges of autistic people themselves.
However, when they were initially introduced, they were revolutionary. They were the early beginnings of our understanding of autism as a spectrum. These days we understand the complexities of concepts such as intelligence, IQ, and ability, and we understand how they are separate from someone’s personal experience of autistic traits.
In recent years, a much darker history has been revealed, surrounding Hans Asperger, which has completely shaken up the world of autism diagnosis and identity.
In 2005, medical historian, Michael Hubenstorf mentioned a close relationship between Asperger and the prominent Nazi physician Franz Hamburger. A few years later in 2009, Herwig Czech, a medical historian at the Medical University of Vienna, found further evidence of these links in the Viennese government archives.
Two years later, Edith Sheffer dug much deeper into these well-preserved archives. She unearthed far more sinister revelations which were to irrevocably shatter the myth that Hans Asperger had saved autistic children from the Nazis. In her recent 2018 book, Asperger’s Children, The Origins of Autism in Nazi Vienna, Sheffer describes how, not only was Asperger involved in the racial policies of Hitler’s Third Reich, but he was also actually complicit in the murder of children.
Since these revelations were discovered, there has been a push to eliminate the use of the name, Asperger, from charities and events. There has also been a more controversial push to remove all trace of the name Asperger Syndrome, and this includes pressure on people with the diagnosis to stop using it altogether. Some autistic adults themselves are very much in favour of this change, saying that doing so does away with unnecessary barriers between our broad spectrum of autistic experiences and creates a more even playing field.
But for many autistic people with Asperger’s, the term has become an integral part of our personal identity and completely independent of any connection to Hans Asperger himself. Many of us, myself included, fondly describe ourselves as Aspies. We wear our Aspie badges with pride and celebrate being part of a larger community of fellow Aspies.
For many of us, due to the pervading myths and stigma around autism, explaining to people that we have Asperger’s somehow feels better than saying we are autistic or that we have autism. It can feel like an easier way to explain our autistic selves. For a great many adults who have worn this badge with pride for a large chunk of our lives, it is not something that we are willing, or even able to give up, and will certainly not tolerate it being forcibly removed from our identity.
There are also varying views in the broader community. Herwig Czech, a medical historian at the Medical University of Vienna and author of the paper entitled, Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna, is not in favour of simply erasing history. She writes “I think we also have to part ways with the idea that an eponym is an unmitigated honor of the person. It is simply a historical acknowledgement that can be, in some cases, troubling or problematic.”
Autistic software engineer, Phil Schwarz writes of Asperger’s research, “I would be very upset if there was some sort of consensus that the findings themselves were tainted and needed to be set aside because of the nature of the person who contributed them.”
Perhaps it is good that using the term Asperger’s continues, at least for as long as those who identify with the diagnosis wish to do so. Perhaps it allows for questioning and discussion about the origins of the name, which in turn helps us to learn from, and remember the lessons of, this dark period of autism history.
Houston RA, Frith U (2000). Autism in History: The Case of Hugh Blair of Borgue. Oxford: John Wiley & Sons.
Manouilenko I, Bejerot S (2015). "Sukhareva—Prior to Asperger and Kanner". Nordic Journal of Psychiatry (Report) (published 31 March 2015). 69 (6): 1761–1764.
Wing, Lorna (February 1981). "Asperger's syndrome: a clinical account". Psychological Medicine. Cambridge University Press. 11 (1): 115–129. doi:10.1017/S0033291700053332. PMID 7208735. Accessed via https://en.wikipedia.org/wiki/Lorna_Wing (09/11/21)
"Dr Judith Gould BSc, MPhil, PhD, AFBPsS, CPsychol". autism.org.uk. National Autism Society. Accessed via https://en.wikipedia.org/wiki/Lorna_Wing (09/11/21)
Manouilenko, Irina; Bejerot, Susanne (31 March 2015). "Sukhareva—Prior to Asperger and Kanner". Nordic Journal of Psychiatry (Report). 69 (6): 1761–4. doi:10.3109/08039488.2015.1005022. ISSN 1502-4725. PMID 25826582. S2CID 207473133. Accessed (09/11/21)
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