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  A BRIEF HISTORY

  For a condition that was only named in the early twentieth century, the clinical definition of Autism has shifted so many times it’s like trying to keep track of who’s married to whom on The Bold and the Beautiful – and just as dramatic.

  Reading about the history of Autism is a little like undergoing a virtual reality experiment in which you instantly develop the symptoms of Autism: you may begin to see giant, free-floating Venn diagrams colliding in the air above you as differing definitions crash into each other and mutate; you may feel confused, even a little gaslit. It is difficult to know who to trust, which theory to stick with, who is right and who is wrong. Eminent researchers are revealed to have toxic sociopolitical views. Previously popular diagnostic criteria are relegated to the scrapheap of history. Labels become slurs. As soon as you think you’ve grasped some aspect of the clinical understanding of Autism, the goal posts are moved again. They’re probably moving right now.

  None of this is helped by the fact that the history of Autism – like so much of history – is typically written by those who are not directly affected by it. This subtle but powerful positionality means that our understanding of Autism is filtered through a lens that is almost exclusively white, male, neurotypical, classist and with a tendency towards pathologising; what Autistic scholar Melanie Yergeau refers to as ‘non-Autistic Autism discourse’. No overview of Autism will ever be perfect, nor complete, due to both the heterogeneity of its presentation and the constantly shifting sands of both diagnostic criteria and understanding of Autistic experience.

  Today, a diagnosis of Autism Spectrum Disorder necessitates two features: persistent impairment in reciprocal social communication and social interaction, and restricted, repetitive patterns of behaviour. This is according to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM). To grasp Autism in a modern context, it’s impossible to avoid mentioning that tome, a taxonomic and diagnostic tool that many specialists use to guide their work.

  In terms of these two features, in the former there must be difficulties with social-emotional reciprocity (what we might call the ‘back and forth’ of communication), issues with nonverbal communication (difficulties with gestures, or problems making and maintaining eye contact, for example), and issues developing and maintaining relationships. In the latter, the person must demonstrate at least two of the following: stereotyped or repetitive speech (such as using an odd turn of phrase, using stock phrases, robotic or ‘sing song’ manners of speaking); excessive adherence to routines, ritualised patterns of verbal or nonverbal behaviour, or excessive resistance to change; restricted, fixated interests that are abnormal in their intensity (such as needing to ‘know everything’ about a particular public transport system); and hyper- or hypo-reactivity to sensory input (either a heightened sensitivity to certain sounds, temperatures and textures, or a lack thereof that means they don’t notice if they’re getting cold or hot, for example) or unusual interest in sensory aspects of their environment.

  The DSM isn’t the sole diagnostic text on the matter, but like many aspects of American cultural hegemony, it looms large in the discourse, and has plenty of internal prejudices regarding gender, race and class. The World Health Organization’s International Classification of Diseases 11th edition, on the other hand, has a less culturally specific approach; it allows clinicians to assess the individual based on a list of Autistic traits. (This is not to position the ICD as ‘good cop’; it has its own shortcomings.) Don’t let the DSM’s clinical title fool you into thinking of it as a neutral object. In an edited collection of philosophical reflections on the DSM, Steeves Demazeux and Patrick Singy characterised it not as ‘The Psychiatric Bible’, but as the psychiatric Tower of Babel. ‘A monument that was originally built to celebrate the new unity of clinical psychiatric discourse, but that ended up creating, as a result of its hubris, ever more profound practical divisions and theoretical difficulties.’2 Nowhere is this more evident than in the ever-shifting sands of the definitions and diagnoses of Autism.

  Released in 2013, the fifth edition of the DSM was the first significant edition of the manual in two decades. Known both colloquially and professionally by an epithet that makes it sound like either a megalomaniac artificial intelligence system or a Starfleet spaceship, DSM-5 radically revised multiple diagnostic definitions. The two most notable changes were the removal of the previously defined subtypes of schizophrenia, and the deletion of subsets of Autism. Asperger syndrome, classic autism, Rett syndrome, childhood disintegrative disorder (CDD) and pervasive developmental disorder (PDD-NOS) were removed as discrete diagnoses and instead folded into the broader umbrella of Autism Spectrum Disorders. DSM-5 arranged Autism Spectrum Disorders in levels of severity: those requiring ‘very substantial support’, ‘substantial support’, or ‘support’. (These are often referred to by clinicians and other services by descending numbers: ASD-1, or Level 1, for ‘support’, and so on.)

  The 2013 revision wasn’t the first time that the DSM’s definition of Autism had undergone a major renovation, however. Both the DSM-III-R, published in 1987, and the DSM-IV in 1994 had expanded the diagnostic definition of Autism and included those who – due to their inability to fit into the rigid diagnostic categories of Autistic presentation as previously defined – had been either misdiagnosed or were bereft of a diagnosis altogether. DSM-III, published in 1980, established Autism as a psychiatric condition separate to schizophrenia (references to ‘autistic’ behaviour appeared in the context of schizophrenia in DSM-II, published in 1968). To the uninitiated, this constant revising of Autism’s diagnostic framework must seem like psychiatric flip-flopping (and no doubt provides naysayers with fuel for the fires of their belief that Autism is a ‘made-up epidemic’, or ‘not as bad as you say it is’). In that case, let’s restart this contextual overview from the beginning and work back to the present day.

  In his seminal 1943 paper, ‘Autistic Disturbances of Affective Contact’, the Ukrainian–Austrian–American psychiatrist Leo Kanner studied eleven children (eight boys and three girls) whose behaviour and symptoms Kanner attributed to ‘infantile autism’. Though this is often credited as the first time Autism was recognised, in 1938 Austrian paediatrician Hans Asperger had recognised the behaviour of what he termed ‘autistic psychopaths’. A popular view of Asperger has long focused on his recognising of ‘little professors’, the so-called ‘high-functioning’ children who could expound upon their special interests, and the type of kids who would – decades in the future – be given the diagnosis bearing his name. Yet Asperger was also working under National Socialism. In that paper, ‘The Mentally Abnormal Child’, he wrote, ‘The central idea of the new Reich – that the whole is more than its parts, and that the Volk is more important than the individual – had to bring about fundamental changes in our whole attitude, since this regards the nation’s most precious asset, its health.’

  Herwig Czech’s 2018 investigation3 into Asperger’s work reveals that Asperger ‘joined several organizations affiliated with the NSDAP (although not the Nazi party itself), publicly legitimized race hygiene policies including forced sterilizations and, on several occasions, actively cooperated with the child “euthanasia” program’. That is to say, although he worked at the Vienna University Children’s Clinic’s Heilpädagogische Station (Therapeutic Pedagogy Ward), Asperger actively referred children to Vienna’s Am Spiegelgrund clinic, the centre for ‘child euthanasia’ programs later known as Aktion T-4, where from 1940 to 1945, 789 children were killed by methods including lethal injection, gas poisoning and physical abuse.

  It became de rigueur for a while, thanks largely to the 2015 publication of Steve Silberman’s engaging popular history of Autism, NeuroTribes, to think of Asperger as an unsung hero of Autistic people. Silberman writes that Asperger ‘intentionally highlighted his “most promising” cases to deflect the wrath of the Nazis’, in essence saving Autistic kids from being mu
rdered by demonstrating their value to the Reich as future code-breakers. Asperger’s focus on skill, rather than defect, may well have prevented the murder of some Autistic children – his ‘little professors’ – but what is unspoken in these heroic depictions is the fate of the children deemed ‘low functioning’. ‘In the context of the “euthanasia” killing programmes, psychiatrists and other physicians had to determine who would live and who would be murdered,’ the prominent Autism specialist Simon Baron-Cohen wrote. ‘It is in this context that diagnostic labels such as “autistic psychopathy” (coined by Asperger) were created.’

  In his poem ‘Dog Fox Field’, the Autistic poet Les Murray reflects on the Nazi test for ‘feeblemindedness’, which was to ask an individual to construct a sentence using the words ‘dog’, ‘fox’ and ‘field’. Many people with disabilities who failed the ‘test’ were murdered using the exhaust of the trucks that transported them. Murray describes as ‘sentries’ the people with disabilities whose treatment to this day (whether societally, bureaucratically, medically or otherwise) alert us that we have not strayed far from Dog Fox Field.

  To be Autistic, and to identify as a self-advocate, means reckoning with the fact that our contemporary understanding of Autism – and, indeed, the notion of ‘functioning’ – has its roots in humanity’s darkest moment.

  Many people diagnosed and self-identified as ‘Aspies’ decried the DSM-5’s removal of a discrete Asperger syndrome as an affront to their identity. I couldn’t think of anything worse than self-identifying with the affectionate name for someone who sent children to the gas chambers. There are some terms that can never be ‘reclaimed’.

  To return to ‘Autistic Disturbances of Affective Contact’, Kanner’s paper provided a framework with which to diagnose children whose challenges might previously have been attributed to schizophrenia, or to being ‘feebleminded’. Kanner noted in these children ‘extreme autistic aloneness’, ‘delayed echolalia’ (a tendency to repeat stock phrases, words and sounds, seemingly free of context or meaning) and an ‘anxiously obsessive desire for the maintenance of sameness’, as well as – in some cases – higher than average intelligence and a particularly impressive memory. The paper also, crucially, made more than passing comment on the possibility that the Autistic child’s parents’ emotional warmth – or lack thereof – might be responsible for the child’s condition.

  Later, in the fifties and sixties, emerging psychoanalytic theory posited that Autism in children was a result of their upbringing at the hands of cold and uncaring mothers; the ‘refrigerator mother’ later popularised by psychologist Bruno Bettelheim. Though Kanner himself later retracted the notion, the damage had been done. In his 1967 book, The Empty Fortress: Infantile Autism and the Birth of the Self, Bettelheim compared the mothers of Autistic children to Nazi prison guards, describing their children as ‘dehumanized’ (by their mother’s wish that they were dead) in the same way that prison camp internees were.

  While we can comprehend Bettelheim’s work through the prism of his own experience as a survivor of both Dachau and Buchenwald concentration camps, it is difficult to convey just how devastating this position on the role of the mother in the development of the understanding of Autism was. The idea that mothers ‘caused’ their children’s Autism had been absorbed at a cellular level by many. Indeed, in the midst of my own journey to diagnosis, my own mum – my sweet, caring mother who has survived more trauma than any ordinary person should bear – reacted with angry tears during one argument we had, terrified that were I to be diagnosed as Autistic, people would think it was her ‘fault’.

  In his 1964 book, The Etiology of Infantile Autism: The Problem of Biological versus Psychological Causation, research psychologist Bernard Rimland argued against the notion that so-called infantile Autism was entirely psychogenic in its cause; there was the clear possibility that Autism, instead, had stronger ties to biology, and thus neurological (rather than psychological) development.

  From the mid-twentieth century, the understanding of Autism began to shift and develop at an exponential rate. British psychiatrist Lorna Wing, along with her collaborator Judith Gould, was the first to expand the notion of Autism as a spectrum rather than a collection of discrete and differentiated disorders, and to coin the term Asperger syndrome. Wing’s work in the late seventies and early eighties, such as the 1981 paper ‘Asperger’s Syndrome: A Clinical Account’4, popularised both the work of Asperger and the understanding of the now eponymous syndrome.

  ‘The children may be mercilessly bullied at school, becoming, in consequence, anxious and afraid.’

  ‘Their social behaviour is naive and peculiar. They may be aware of their difficulties and even strive to overcome them, but in inappropriate ways and with signal lack of success.’

  ‘Pedantic speech and a tendency to take things literally can also be found in normal people.’

  It’s not clear what, if anything, Wing knew of the specifics of Asperger’s work under National Socialism; nevertheless, Asperger syndrome – colloquially ‘Asperger’s’ – was eventually presented as a separate diagnosis from Autism in the DSM-IV (1994). Like many aspects of Autistic history, there was some conjecture as to whether Asperger’s was separate to so-called High-Functioning Autism, or whether the two terms essentially referred to the same presentation. In order to necessitate a diagnosis of Asperger’s, the individual would display some Autistic behaviours (what University College London Institute of Cognitive Neuroscience professor Uta Frith describes as ‘having a dash of autism’), but their most significant challenges would be in the areas of social and communication skills; they would also be unlikely to have experienced delays in language development.

  In the eighties, the concept of ‘theory of mind’ emerged as a possible key issue of Autism. Theory of mind, or the ability to attribute mental states to others as well as ourselves, is a cornerstone of empathy. Uta Frith and Simon Baron-Cohen’s 1985 investigation5 found that the Autistic children they observed were outpaced by both the typically developing children and children with Down syndrome in the sample group when it came to displaying theory of mind. Eventually, the research began to suggest that theory of mind could be significantly impaired in Autistic people, with issues relating to language and socialisation.

  Another widely accepted cognitive theory proposed by Frith in 1989, ‘weak central coherence’, suggests that Autistic people may struggle or fail to use context – such as someone’s tone of voice or facial expression – to understand their environment. They quite literally can’t see the forest for the trees. Intriguingly, WCC can be understood as a perceptual bias or difference 6, whereas theory of mind presents a more deficit-based understanding of Autistic experience.

  But even as the notion of an Autism spectrum emerged, the misunderstanding of said spectrum as a straight line – from ‘low functioning’ to ‘high functioning’, or worse, from ‘low functioning’ to ‘not Autistic’ – persists to this day. The reality, as most Autistic people will tell you, is that function (whether perceived or actual) is rarely static. By the time the DSM-5 collapsed all Autistic and Autistic-adjacent conditions into the one condition, Autism Spectrum Disorder, ‘function’ was still reflected in the ‘levels’ – ASD 1, 2 or 3 – that would be assigned to an individual’s diagnosis.

  The notion that Autism may present differently according to the individual’s gender did not emerge until around the 2010s. The misunderstanding of Autism as a ‘boys’’ condition was built in from the ground up, clinically speaking. Wing, in her 1981 paper presenting the work of Hans Asperger to a new audience, wrote that ‘Asperger noted that the syndrome was very much more common in boys than in girls’; indeed, Asperger initially considered whether the condition might be confined to males. Most of both Asperger’s and Kanner’s charges were young boys and men, so it follows that most of the evidence that became diagnostic fact was skewed towards these male presentations.

  As it turns out, Autism can present very dif
ferently in girls. Professor Tony Attwood, one of the leading researchers into the gendered differences in Autism presentations, considers it to be less about the specific symptoms (for want of a better word) than the way Autistic females adapt to conceal those symptoms. In other words, their difference isn’t so much to do with the nature of their Autism, but the fact that they respond differently to being ‘different’. They cope by camouflaging or masking their true selves, sometimes imitating others to do so; when that doesn’t work, they may just disappear into their interests and daydreams. It was Attwood’s work that sent me off on my first vortex of pre-diagnosis realisation: holy shit, this is me!

  Autistic girls may, by comparison to their male equivalents (who may end up as ‘loners’ among their peers), seem very outgoing, even confident; they may ‘perform’ confidence, the persona carefully constructed by watching other, more popular girls, or fictional characters. At the same time, an Autistic girl who is shy or a bit withdrawn might not raise any concern in parents or teachers; she might just be seen as well-behaved or thoughtful. But whether she is outgoing or reserved, the Autistic girl is often hiding in plain sight. Eventually, the cost – emotional and psychological – of masking must be paid. As adolescence unfolds, Autistic girls may suffer from identity crises, emotional exhaustion, and low-self esteem; their habit of adopting a different persona in various contexts may lead them to question who they actually are.