History Of Autism
"The word Autism comes from the Greek, 'autos' meaning self and was first used by Eugene Bleuler in 1908.(Murray, 2012, p39)."
Understanding the history of autism makes clear how and why autistic people are perceived the way they are in mainstream culture. How societal value shifts, coupled with cultural ideologies, have given rise to certain language use, and ideas about what it means to be autistic, and what it means to be an autistic person's support system. Medical research has been attempting to understand the why and how of autism since the early 30s. This information is still beyond the reach of medical science today.
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Until the Early 20th Century
Current research has established that autism is a neurobiological condition and if we accept that, then we must also accept that this human variation must have always existed. Two of the most popular examples of autists are from 1797 and 1828. Victor, the 'Wild Boy of Averyon', a non verbal child found in the forests of France, and Kasper Hauser, a teenager who appeared in Germany and his papers would suggest a life in an enclosed basement dungeon until then.
A byproduct of this analysis of the past using the lens of what we currently know, has led to the creation of 'autism heroes'. Issac Newton, Albert Einstein, Emily Dickinson, Lewis Carroll, have all had their work and lives examined. Before the middle of the of the 20th century, it is exceptionally complicated to talk about Autism and the issues surrounding it. As Murray says, " Anything and everything can it seems, be seen to be autistic: slight behavioral traits discovered in letters or written accounts can be seized upon as proof; anecdotal information remembered by acquaintances is disproportionately elevated to the status of informed knowledge; and the ideas of impairment associated with the condition means that even the absence of facts (in terms of, say, an individual not especially good at 'social interaction) can be interpreted as evidence. (p.41)" While these connections were made based on heresay and deduction, the one other link was that of the 'idiot figure' of the 19th century and its interconnection with autism. Another term used up until recently was that of the 'idiot savant'. The term idiot has no clear diagnosable criteria as a medical term and Martin Halliwell, says the term functions more as a symbol for "that which defies categorization". As Murray expounds, idiocy was a product of increased institutionalization and monitoring and the 1866 Idiocy and its Treatment by the Physiological Method, began to differentiate it from larger categories of madness. All of this paved the way to the 20th century medicalized model of autism.
The Medical Model
Kanner and Asperger - 1930s -1940s (Mid 20th Century)
As we currently understand it Autism dates from the late 1930s and early 1940s based on the work of two psychiatrists Leo Kanner and Hans Asperger. These two individuals worked independently of one another and used the word to describe children they worked with.
Child psychiatry saw a rise during the nineteenth century and as Murray describes it, medical models of the body and mind gathered empirical characteristics and the idea of the 'idiot' or 'feeble minded' also developed further with other new categories such as 'deviant', and 'degenerate'. The terms suggest a rise in the idea of a social order where normalcy was highly prioritized and would be controlled. This led to the creation of asylums where anyone with cognitive differences was placed. Asylums and the confinement they offered led to observations and became labs for psychiatric research.
The category of the 'idiot child' was established in 1879 in a medical textbook written by Henry Maudsley, in a chapter about childhood psychosis.
Consequently this combination of medical emphasis, social control and an interest in childhood education shone a spotlight on children with disabilities and a number of specializations focusing on children were created.
Leo Kanner was one such doctor. His study of 11 children, at Johns Hopkins in Boston, was published in 1943 and called, " Autistic disturbances of Affective Contact". He described affective contact as meaningful interaction with others. Behavior became the central component of determination in Kanner's methods. While this would seem logical given the lack of any biological information about autism, it became an easy path from a focus on behavior, to negative connotations with related deficit vocabulary.
The more significant result of this study was more that the process of study, being observational, required the 'looking for' certain markers, resulting in a generalized result about autism. His surveillance method also created two other consequences:
- Autism became associated with children
- Autism became 'assessable' by an expert who could read the condition
This further embedded the idea that autism is 'hosted' in a body that is essentially non autistic.
Around the same time Hans Asperger produced research in his name in Vienna. His observations were of 4 boys and the results were very similar to Kanner's. He emphasized the 'hosted' or 'inside a person' model. Much of Asperger's work however was not translated into English till the 1980s and Kanner's thinking guided thinking about autism.
While these observatory studies helped identifying autism, they did little to explain what caused it. The 1950s and 60s were the time for this exploration.
Bruno Bettelheim & Parents: 1950s - 1970s
Kanner's study highlighted another fascination - family stories. He wrote six sentences about adults, which influenced autism thinking greatly for the next 30 years. "one other fact stands out predominantly. In the whole group there are few really warm hearted fathers and mothers. ...The question arises whether or to what extent this fact has contributed to the condition of the children. (Kanner, 1943, 250)" This flippant observation presented as fact made what he thought clear - parents were responsible for their autistic children's 'condition'. As more research continued it was framed under the period's development of psychoanalysis. In a vacuum of any biological determinants for diagnosis, Kanner's suggestions about parents became a more attractive possibility and psychoanalytic research began to analyze this connection.
Bruno Bettelheim led this research. An authoritarian figure who had endured Nazi concentration camps, came to view autism through the lens of his own experiences. He was convinced that the horrors of the camps had left prisoners aloof, withdrawn and docile. His generalized and disturbing conclusion was then that this mirrored the relationship between children and their parents, just like between prisoner and guard. He became known as a 'specialist' and his appeal lay in the presenting of a cure. Since his theories did not accept the biological causation, they gave the idea of a cure validity and the only cure presented was - separate the parent from the child.
Bettelheim's theories and methods were subsequently debunked by a strong anti-psychiatry movement in the 1960s and 1970s. Many of his wards also came forward after his suicide in 1990 to detail the abuses inflicted upon them.
The Beginnings of The Social Model
Advocacy & Laws: 1980s and Beyond
"The rise of the opinion that autism constitutes a positive difference, and is not a deficit, has been the most noticeable non-medical development in the history of the condition in the last decade. (Murray, 2012, p63)"
Parents and professionals who also resisted the psychoanalytic ideas of the past decades came together to form groups. The Society for Autistic Children was formed in 1962, and the first US autism association was formed in 1963. The National Society for Autistic Children had its first congress in 1969. These groups used campaigning for years, and were able to create understanding, build social support, and help create special education provisions for those with needs. The associations also eventually dropped the world 'children' from their titles displaying the understanding that autism is lifelong and that adults need their requirements met as well. These were bold and prescient moves in times when little was known or understood on a systemic level. Other parts of the world also slowly followed suit. The Action for Autism (AFA) was set up in India in 1991, however the Indians with Disabilities did not include autism until the Rights and Facilities available to persons with ASD in 2016.
The 1990s saw autistic people such as Temple Grandin, Donna Williams, Xenia Grant and Jim Sinclair command attention through their arguments about neurodiversity. Most of these were however still tied to the mainstream and 'expert' ideas of ableism. It was Jim Sinclair in his path breaking manifesto, "Don't Mourn for Us" , where he rejected the ideas of 'despair', 'tragedy', 'suffering' and 'deficit'. He walked away from the ableist language and refused to accept that "parental grief was somehow the inevitable result of autism (Pripas, 2020, Abstract)." Amanda Baggs and Ari Ne'eman have commanded attention in the last decade with Baggs posting "In my language" in 2007 and Ne'eman founding the Autistic Self Advocacy Network(ASAN). Ne'eman was the first disabled person to be invited to serve on the National Council on Disability. Technology has become the great voice and served as a great support for Autistic people to have their voices heard.
1996: European Parliament produced Charter of rights of Persons with Autism - Same rights for all Europeans
2009: UK Autism Act - Care for adults
2006: US 'Combating' Autism Act - Committing Federal Funds for research and social/educational services
Popular Culture Narrative
Although medical research and debates about treatment and interventions have been ongoing since the early part of the 20th century, autism came into the mainstream owing to Barry Levinson's 1998 Rain man. Although its cliched representations are dated and irrelevant today, the movie played a critical role in the historical development of the awareness of autism.
Once again, the movie highlighted everything we don't know about autism. Barry Levinson and the writers did a thorough job trying to understand autism in that moment. However since what we knew was only partial and through the creative license used to make good cinema, a depiction was created that was accepted by the general public as factual.
This created a dangerous one story version of autism. Being a savant was associated with autism and led to the inevitable 'display culture' around autism.
Autism today has two large factors that surround it - the perfect storm as Roy Richard Ginker called the discussion around autism and the medical attempts/ research being made to understand the cause of autism.
At the start of the 21st century a 'perfect storm' has come to be around autism discussion. A combination of factors contribute - the increased interest, the widening criteria for diagnosis with an increase of referrals to doctors, the dissenters and non-specialists who cannot move away from what they think they know based on history, increased media attention, and finally the constant and widespread debate and discussion about all aspects of autism research. Since there is so much we still don't know, the space to ponder and extrapolate is vast.
The one critical factor that shifts the course of this 'storm' is the voice of people with lived experiences. Not parents or caregivers, but autists who can speak to their lives and experiences. When neurotypicals make the effort to truly listen, the upside is clear - While we are still learning, we are at a moment in time when we (can) value autism like never before. (p.73)
There is much modern day research into the origins of autism and what is termed as atypical brain structure. "People think of science as a body of knowledge or scientific societies or scientists, But it's really just a way of thinking about a problem."(Offit 2008, 206). As Murray stresses, " we have to accept the provisional nature of much medical investigation, its 'way of thinking' even as we look to it for the clues that will enable us to know more about what makes up the condition." (p.3)
While there is information we now have about the functioning of parts of the brain such as the amygdala, prefrontal cortex and hippocampus - known as the social brain; the size of brains of autistic people - which are larger than brains of those without; increased cell density in certain parts; this information does not locate the foundational cause and critically, nor does it seek to express how this information could be most usefully positioned.
information transfer is highly effective
There is recent Research supports 'The Double Empathy Problem' which claims that autistic peer-peer information transfer is highly effective. It is the information transfer between autistic and non autistic people where the breakdown in communication occurs.
These findings are potential disruptors of the prevalent research hypothesis around autism and give us hope that there is potential for a paradigm shift.
The research presents an alternate version of what we consider ability or affective behavior with regards to communication and makes me wonder, what if cultural and linguistic boundaries were not decided based solely on geography or ethnicity, but also based on neurodiversity?