Bonnie Evans on how autism became such an important psychological concep

Evans, Bonnie

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The Creation of AutismBonnie Evans on how autism became such an important psychological conceptThe diagnosis of autistic spectrum disorders in children and adults has rapidly increased in the lasttwenty years. A growing number of people also now self-identify as an ‘Aspie’ or someone ‘on thespectrum’. Autism has become part of our common language for describing and understandinghuman individuality and self-identity. We live in a culture in which many of us think about themeaning of autism and its relation to ourselves, or someone we may know. The NHS website andother online medical resources enable parents to reﬂect on whether their child has autism. Supportgroups and online forums ﬂourish in which people can tackle such challenging topics as ‘I think Imay have autism’ and ‘is my husband autistic?’. On a slightly more frivolous note, a growing line ofT-shirt merchandise enables individuals to wear clothes with printed statements such as ‘I hadAsperger’s before it was cool’, ‘Autistic Pride’, and ‘Kiss my Asperger’s’, conﬁrming theacceptance and appreciation of autism within wider youth culture.Statistics present a similar picture. The very ﬁrst epidemiological study of autism in the world,conducted in England in the 1960s, generated a rate of 4.5 per 10,000 children. More recent UKstudies put the rate of autistic spectrum disorder at around 1 in 100 children or even as high as 1in 64. These ﬁgures mask the critical fact that autism has now become a ‘spectrum’ and that itcurrently encompasses much behaviour and thought that was not considered within its purview inthe 1960s. Many medical and psychological researchers have bent themselves over backwards inorder to understand the meaning of these quantitative changes, sometimes leading them to chaseup blind alleys or towards precarious convictions. Although scientiﬁc enquiry obviously has itsplace, the more important question in relation to the growing signiﬁcance of autism within ourculture, I think, is: Why did autism become a spectrum? And the answer to that can be found inhistory. Good, solid history.In order to understand how autism became a spectrum, it is necessary to return to the origins ofour modern concepts of psychological development and self-identity. You may think that autism isa shiny new category, but in fact it has been around for as long as developmental psychologyitself. Despite popular belief, it was not the American psychiatrist Leo Kanner who ﬁrst describedautism in children, but rather the Swiss developmental psychologist Jean Piaget who used it todescribe pre-social states of child thought in the early 1920s. Piaget drew from the leading gurusof descriptive psychopathology at the time: Eugen Bleuler (who invented the words autism andschizophrenia), and Sigmund Freud. Developmental psychologists in the 1920s wrote frequentlyabout autism and related kinds of thinking, such as ‘primary narcissism’ and ‘symbolic’ thinking.Autism was regarded as part of a normal range of thinking that some people were more pronetowards and it was associated with an interest in fantasy, imagination, and day-dreaming, coupledwith a disinterest in relationships and social engagement.There were several attempts to isolate autism as a speciﬁc medical condition in the 1940s and1950s, most notably by Leo Kanner (see here, for example), and it was this that led to the limitedmodel of autism that produced such low rates in the ﬁrst epidemiological study in the 1960s.However, this attempt to narrow the category of autism was relatively short lived. By the 1970s,autism was already entering into a new ﬁeld of child development research. The impetus for thiswas actually the closure in Britain and in many other parts of the Western world, from the late1950s onwards, of institutions for children and adults with what was then called ‘mental deﬁciency’or ‘mental retardation’. The closure of ‘mental deﬁciency’ institutions encouraged radical overhaulsof the techniques for measuring and understanding child development. This generated new scalesof ‘social impairment’ that fed into the creation of new models of autism.These changes led to a transformation in the meaning of autism. Piaget and others thought thatpre-social, asocial, or autistic thinking was associated with a creative, symbolic, dreamlike world,characterized by fantasies and hallucinations. However, the newly quantiﬁed, epidemiologicallydeﬁned autism of the 1960s redeﬁned autism as a measurable entity that had nothing to do withimaginative thinking or inner fantasies. By the start of the 1970s, autism had come to mean theexact opposite of what it had previously meant. Although both autisms described pre-social or a-social states of mind, autism in the 1950s and 1960s referred to fantastical, hallucinatory thinking,whereas by the 1970s and 1980s, autism referred to a lack of fantasy, a lack of hallucination, anda lack of imagination. This was the birth of the ‘social impairment’ model of autism and the ideathat non-social styles of thought could be measured, quantiﬁed, calculated, and tabulated.Autism researchers of the 1970s and 1980s had new models of social justice on their side. Themost important, persuasive, commanding, and formidable person responsible for transforming themeaning of autism and creating the current autism ‘spectrum’ was a British woman named LornaWing. Wing was the mother of a child diagnosed with autism and also a tireless campaigner,lobbying the British government to establish appropriate educational services for children whowere no longer institutionalized under the ‘mental deﬁciency’ law. She was also a trainedpsychologist who organized the ﬁrst population-wide study of ‘social impairment’ in England in thelate 1970s. Wing argued  that autism was not a unique medical condition but rather part of aspectrum of conditions in which children showed a ‘triad of impairments’: in social interaction, incommunication, and in symbolic play. This description of autism, based on a total populationsample, was the one that made it into the 1987 Diagnostic and Statistical Manual of MentalDisorders (DSM) and which has been used in autism diagnoses and studies worldwide,encouraging a wider interpretation of the ‘autistic spectrum’. Wing was also the person whointroduced the category of ‘Asperger’s syndrome’, citing the work of a little-known Austrianphysician from the 1940s, in order to build what was essentially her own psychological category.When doctors, psychologists, parents, ‘Aspies’, and others wonder about the ubiquity andprevalence of autism, they would do well to remember that our current categories and descriptionsof autism are, and will always be, related to a more general, common, broad-scale understandingof human development, even though the meaning of that scale has changed. There are historicalreasons for this change, the closure of ‘mental deﬁciency’ institutions being the most important.These changes in meaning should not be a source of confusion, as they sometimes have been,but should rather push us towards acknowledging the importance of history when it comes tocomprehending the pervasiveness of autism. Lorna Wing’s work, and British research in general,has been hugely inﬂuential in generating an international category of autism. The reasons for thisHome News Forthcoming Events theBlog thePodcasts Past Events About UsContact Us Monday, 14 March 2016can be understood by studying British culture from the 1960s to the 1980s. These are historicalreason.In the early 1990s, as diagnoses of autism began to rise worldwide, the ‘neurodiversity’ movementalso began to form, with adherents arguing that autism wasn’t an illness, nor even always adisability, but merely a different kind of thinking. In fact, if you think about the history, this wasalmost inevitable. Although some autism researchers ﬁrst admitted to being ﬂummoxed by the‘neurodiversity’ movement, there has recently been a change in approach. For example, Britishresearchers Simon Baron Cohen and Francesca Happé have started to employ the language of‘neurodiversity’ themselves, arguing that most of us are just ‘neurotypical’ and that autism may notalways be a disability, merely another way to think. That doesn’t compromise their research, theysay, it merely afﬁrms its importance as the new model for thinking about early development andthe formation of social life. They are right about that. Autism has become part of our language forunderstanding modern selfhood and self-identity. There is no turning back now. But it is importantto know how we got here.Bonnie Evans is a Wellcome Trust Postdoctoral Fellow at Queen Mary, University of London. Thisblog is a summary of some of the arguments presented her articles ‘How Autism Became Autism:The Radical Transformation of a Central Concept of Child Development’, published in the Historyof the Human Sciences, ‘The Foundations of Autism: The Law Concerning Psychotic,Schizophrenic, and Autistic Children in 1950s and 1960s Britain’, published in the Bulletin of theHistory of Medicine, and her forthcoming book The Metamorphosis of Autism: A History of ChildDevelopment in England (Manchester University Press).Image credit: Mariano PeccinettiHome News Forthcoming Events theBlog thePodcasts Past Events About UsContact Us 

The creation of autism

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