To date, there has been little exploration into autism narratives.Uta Frith's Autism: Explaining the Enigma, a chapter entitled 'Beyond Enchantment', which examines classic fairy tales such as Snow White and Sleeping Beauty as autistic metaphors, as well as the Russian yurodivy (юродивый) or "blessed fools" and Sherlock Holmes, as examples of possible cultural forms of the condition before it was medicalised.But this is a rare examination, lost in the sea of texts that attempt to clarify diagnostic criteria and therapies for the lay reader.Slightly more common is the speculation of famous people, past and present.Although primarily seen online in autism communities, the practice has probably been best popularised by Michael Fitzgerald, who, in books such as Autism and Creativity, identifies figures such as George Orwell, Isaac Newton, Albert Einstein and Andy Warhol, as being on the autistic spectrum.
Although
Murray covers many texts by diagnosed autistics and their families, he devotes a significant portion of his book to speculating about the likes of Virginia Woolf's sister,
Laura, and fiction characters such as in
Bartley the Scrivener, or the children in
The Idiots.Taken too far, the practice can potentially dilute the meaning of the word 'autism', but it is necessary to put the contemporary culture in context.
The medical term 'autism' was first used by psychiatrist Eugene Bleuler in 1908 to describe 'the idiosyncratic, self-centred withdrawal into an active fantasy life' of schizophrenics. The term was adopted in 1943 by
child psychiatrist Leo Kanner in the foundational
research article that for the modern understanding of autism. He identified such classic traits as: children rarely interacting with adults, communication delays, methodical and obsessive behaviours and a seemingly fearful reaction to environmental stimuli.He wrote that their disorder was their 'inability to relate themselves in the ordinary ways to people and situations' and that the children did not withdraw from relationships but rather exhibited '
extreme autistic aloneless´ from the start.
"He just is there", Kanner wrote, generalizing the child's failure at interaction. These early descriptions established autism as a disorder of children, and as something 'inside the person' which invites interrogation of the person as a
host of the condition.
On the other side of the
Atlantic, in 1944, Hans Asperger published a
similar study in German (although it would remain relatively unknown until translated to English in the 1990's) Uncannily, he also used the word 'autism' and wrote that '
the autist is only himself'. Emphasising 'is there' and 'himself' recognises that the autistic might have some say in how they are seen, but the popular reading stresses the 'just' or 'only', making the autistic's presence barely acknowledged.
Autistics are repeatedly denied the authority define their culture's experience and history.Publishers print writing by autistics when it addresses the concerns of parents, while ignoring autistic identity.Even with the rise of the internet and self-publishing, we are
derailed by accusations that we are "not really autistic", that we are either "
not autistic enough" or
"too autistic" to know what we are talking about, that our experiences cannot be considered representative of less-verbal autistics, that criticism of influential organisations constitutes
copyright and trademark infringement, and so on.Most of the time, we are simply drowned out by people bringing the conversation back to themselves as burdened parents.
This silencing can be difficult to see because autism, like other disabilities (and other minority cultures such as queers) is reduced to a 'stock feature of characterization', or 'an opportunistic narrative device' by which an idea of the 'normal' or 'abled' is produced. From Clara Clairborne Parke's 1967
The Siege: A Family's Journey Into the World of an Autistic Child, to modern
television dramas The West Wing, ER and
House, autism is about everything but itself: (exploring what it means to be a mother, how families cope with hardship, fidelity in marriage etc…).
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Murray identifies Rain Man as the foundational text for contemporary representations of autism, before which, autism was largely unknown to the public.The
savant skills[1] of Raymond in
Rain Man fascinated audiences, leading to autistics performing feats of mathematical and memorisation on television. One example is Daniel Tammet, who holds the record for memorising pi to 22,514 places.He has appeared on
David Letterman and 60 minutes, and was the subject of the documentary
Brainman : The Boy with the Incredible Brain, which as part of Channel 5's "
Extraordinary People" series, negotiates a place between the overcoming narrative and
modern freak show (Other titles in the series include
The Man with no Face and the
Fastest Man on no Legs).Most notably, the documentary self-consciously attempted to recreate the casino scene from
RainMan. "I know all about autism – I've seen that film," says Diane Wooton disparagingly in
Snow Cake.Despite clearly wanting to break away from the stereotype established by
Rain Man, the film doesn't provide a clearer view on the autistic experience, or advance to the public how the autistic can be part of everyday society.Alex, the main character, is forced to confront his past and move past the grief and anger he has kept bottled up while the autistic character Linda worries
about who will take out the garbage.Ultimately,
Snow Cake is more like the movie it tries not to be.In
Rain Man, Charlie is shown to be the one who is impaired: his language is repetitive, he has trouble listening, and when told of his father's death he appears emotionless.The parallels with his autistic brother Raymond are intentional, but while Charlie grows and moves forward, Raymond, like an appliance removed from the cupboard, and returned after use, simply ends up back at the mental institution. When autistics are allowed to change, it is within the parameters of the overcoming disability narrative.For example, Tim, the non-verbal autistic child in
Silent Fall, is witness to his parent's murder.The protagonist, an unconventional therapist grappling with the death of a child at his previous place of employment, rediscovers his self confidence, while Tim learns to speak.In his misrepresentation of autism, and projection of his self onto Tim, the therapist tells us "I think autism is a kind of overpowering fear… There's a boy in there, but I think he's trapped behind a wall, and I think his being trapped makes him terrified."…Autism, fear, murder, entrapment and deceit are grouped together in the film, to be opposed by freedom, illumination, truth and justice.
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Dr Temple Grandin is probably the most famous living autistic.Her books, particularly
Thinking in Pictures, give a first hand account of her experiences, from a severely impaired child to a published author with a PhD. Her story follows the arc of most disability narratives: overcoming the difficulties seen to come from impairment. This struggle proves the disabled person's integrity, those around them find their lives enriched, and humanity as a whole triumphs.
Although she discusses figures such as Einstein, Van Gogh and Darwin as having autistic characteristics, she does not present autistics as being part of natural variety to be respected in their own right.Instead, she presents autism as a "price that has to be paid" for
genetic diversity. A few mutant genes may result in talented artists and intellectual geniuses, but too result in autism. Biologically, this makes autistics a side effect of what makes humankind special, valuable only for how we can add to and enrich the majority, non-disabled, culture. Grandin advocates for autistics to be supported by parents and professionals to develop their full potentials, but this is ostentatiously so that they
will have self-supporting careers. I am reminded of those feminists see equality as adopting the career ambitions of workaholic men, rather than opportunity to
choose how to contribute to society and to be valued for it (regardless if that's a paid career, homemaking, or something else, and regardless of one's gender).
Between 1985 and 2004, over 55 autistic autobiographies were published in English, and the same "overcoming narrative" can be found in them.
Donna Williams, who was
Nobody Nowhere, fights to escape the 'unreality' of autism and become
Somebody Somewhere, a functional, less autistic adult.
John Robinson had trouble communicating as a child and fails school but eventually finds his place rocket-shooting guitars for the rock band Kiss, designing computerized toys, and running a business repairing high-end cars.
But online, the
number of internet postings are countless, as is the variety of experience.
In My Language opens with a succession of hums and other sounds which are, in
Amanda Baggs' words, her 'native language'.Recognising that the mainstream audience takes this as evidence of her being 'locked away', she explains her behaviour in the second half.She also used this technique on her website '
Autism: Getting the Truth Out'.Although one of the criteria necessary for diagnosis is a communication impairment, Baggs' demand that her life be seen and comprehended as different, but not diseased, is clear.
With 770,000+ views on youtube, Baggs is well known in online autistic circles, but it is not known how many of these recorded hits are repeat viewers, gawkers, or sympathetic autistics.Mainstream audiences are much more likely to have watched
Jenny McCarthy on Oprah promoting her book
Louder Than Words: A Mother's Journey in Healing Autism (even at its current
low, the show has well over
7 million viewers daily).Celebrities are important to drawing attention to a condition, as is demonstrated by the success of campaigns by the highly influential
Autism Speaks which has funded some
89-million dollars into autism research. The result of this, is that autism narratives must compete much harder to be heard.For autistics who already are hampered by social and communication disabilities, this competition can often feel futile.
In 2006, Autism Speaks sponsored the documentary
Autism Every Day, which is primarily about making heroes of the affected children's self-centred "
parents, who have endured not only exhausting financial and emotional burdens but also shame, guilt, criticism and ridicule". Although it was selected for a special screening at the 2007
Sundance Film Festival,
and generated positive reviews,
disability rights advocates have
criticised its
concentration on the pessimistic to the
exclusion of the positive.
The parents in the film
were instructed not to do their hair, vacuum or bring in therapists. The film crew showed up on doorsteps unannounced and rolled cameras as the children, sensitive to the break in routine, the strangers in their homes, the lights and sounds of the filming equipment, had the to-be-expected melt-downs. The resulting relentless negative and
arguably staged sequences are deceptive about the typical day for a family with an autistic.
One interview in the film that drew significant
controversy was that of a mother describing that she did not kill her autistic daughter only for the sake of her other, non-autistic, daughter.This was said in front of the autistic child.Communication difficulty does not equal lack of understanding, but this need not be considered because, in the words of Kanner and Asperger, the autistic is 'just' or 'only' there.The autistic is less human than a peripheral object that gives meaning to the non-disabled majority. Such dehumanisation and
rhetoric normalises murder.It was only four days after the release of said film
a mother did in fact kill her autistic daughter.
In recent years many other autistics have ended up dead,
or injured through murder,
neglect or abuse.
The press focuses on the burden of caring for an autistic child,
creating sympathy for the killer and reducing the victim to the "cause" of their killer's actions.Even when it involves our own murder, it is the parent's hopes and fears that saturate current debates about autism.
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Autistic authors like Donna Williams and
Temple Grandin talk about sensory disturbances, including that of vision, and there is a significant amount of research into how autistics
look at, and
process images. To be diagnosed requires often invasive observation by professionals.While autistics can, and do, '
pass', certain situations can provoke
behaviour (tantrums, vocalisations, hand-flapping, spinning, etc) that attracts unwanted attention and speculation.
"It is impossible not to look,"
Murray writes."This is especially the case [for parents] with photographs taken
before … the diagnosis," looking for evidence, or for the "moment when their child was 'lost'".After the diagnosis, and reading of books and websites, it is common to continue to
watch, at which point, it may be difficult to see anything
but the autism, often to the point of
obliterating the child's self-expression.
The idea that autistics are withdrawn prompts portraiture where they are
hiding their faces or are photographed
from behind, in addition to being
trapped by, lost in, or
overwhelmed by the surroundings.
In
Rosie Barnes' photography collection of her autistic son,
Understanding Stanley (2002),
Stanley is often
figured this way. In one, he is on a playground toy with his turned away from the camera.He is looking at a mural that takes up most of the photograph.Barnes writes: "He sat still for a long time on that bike, just sitting still, staring at this kind of madness". Why must the mural represent madness? With its bright, bold colours, it is just as valid to see fun, pleasure, or challenge in it.In other photographs,
Stanley stands naked, and alone, on a trampoline, facing away from the camera.In another, he looks down, as he sits, seemingly passive,
on a swing. He can be seen as a tiny figure,
trapped at the bottom of a window, or alone on a green lawn,
circumscribed by a red hoola-hoop. In one photograph,
Stanley has been
replaced by a cactus. "
Stanley looks like any other child," says Barnes, "then you realize that there's this kind of rigidity there..."Instead of an idea of presence, Barnes' work depicts a problematic kind of erasure.
The other common form of
autistic portraiture is of
extreme close ups.Thomas Balsamo and Sharon Rosenbloom's 2004 collection
Souls: Beneath & Beyond Autism, features mostly solo
portraits of autistic children. Taken on their own, there is nothing to see: they're
like any other children,
smiling and
looking at the camera. But
knowing the child is autistic changes the dynamics, especially given Balsamo's written instruction to "look into the eyes of these beautiful children". The audience cannot help but stare and to look
for the autism.
The
focus on the child's eyes can be so close that the rest of the face outside the frame. Even without the accompanying text, the clear metaphor is of the eyes being the window to the soul.If the public impolitely
stares at people's physical differences, what does it say about being autistic when they are instructed to stare into our
eyes, and how can we
stare back?
[1] Although it is estimated only 10% of autistics are savants, it has become a stereotype in contemporary cultural. In Barbara Gowdy's Mister Sandman, an autistic girl is a savant pianist. Frank Conroy's Body and Soul has another autistic musical prodigy. Alessandro Baricco's City has a child mathematical savant. Helen DeWitt's Last Samurai, The has a child savant who can master any language. Elizabeth Moon's The Speed of Dark has savant adults being used as guinea pigs. And so on.