- - Cello Cat - defaultalchemia ([personal profile] alchemia) wrote,
@ 2009-04-24 02:04 pm UTC
Entry tags:amanda baggs, autism, autism speaks, bartley the scrivener, blessed fools, constructing normalacy, cultural minorities, daniel tammet, dehumanisation, derailing, dr temple grandin, extreme close up, eyes, modern freak shows, normalising murder, overcoming disability narrative, photography, rain man, savantism, snow cake, the idiots, virginia woolf's sister
Representing Autism: Culture, Narrative, Fascination

The following stems from my recent reading of Stuart Murray's Representing Autism: Culture, Narrative, Fascination

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There has been an incredible increase in contemporary narratives dealing with autism, but despite the books, articles, movies and television shows, there is still very little understanding about what it means to be autistic.Fictional works with autistic characters, have become common (especially in the past 20 years), but by and far, most of the published material is written by and for parents and other care givers with a focus on diagnosis, treatment, and the effect on the family.In both fiction and non-fiction, the autistic usually appears as what Murray terms the 'sentimental savant', existing to enrich the lives of the non-autistic majority and aid in 'the construction of normalcy'.

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 itsconcentration 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.


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A black and white hooded rat, head and front paws, black background, as if looking out window. Says "idler@."

[personal profile] idlerat
2009-04-25 02:10 pm UTC (link)
Very illuminating overview. Thank you.

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- - Cello Cat - default

[personal profile] alchemia
2009-04-30 05:57 am UTC (link)
thanks for commenting!

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dark sphinx (default icon)

[personal profile] cathexys
2009-05-02 01:42 pm UTC (link)
Reading back through my flists this weekend. I'd been looking fwd to your posts, and i'm so glad you're taking the time to do them.

I think the paradox of having outsiders become the most easily recognizable representatives because they are easier to connect to/to comprehend/to sympathize with [?] is a really difficult one to overcome.

i came across In My Language a while back and was fascinated by it and my own responses. In a way, it was a bit like suddenly realizing that transgender wasn't always an attempt to move from one category to the other but to assert the spectrum of in between ness. (Which you were pretty fundamental in making me realize as well!) It was eye opening in a way that continues to affect my thought thereafter. And my teaching!

Thank you for all the links! It'll take me a while to get through them, but I now know where to start reading :)

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text harry potter's a lush!

[personal profile] wrabbit
2009-05-03 10:11 pm UTC (link)
Thank you so much for posting this-- I'm glad I got to read it. I found it very interesting, and I can see how much time you put into organizing all the information. Thank you for all the links!

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DW barcode

[personal profile] livrelibre
2009-05-03 11:43 pm UTC (link)
Thanks so much for the links and for writing this.

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a bird in the hand

[personal profile] tree
2009-05-04 08:53 am UTC (link)
thank you so much for putting this together.

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grey

[personal profile] thistleingrey
2009-05-04 08:36 pm UTC (link)
Thanks very much for writing and posting this. My brother-in-law is "low-functioning" autistic, my mother-in-law a tireless advocate and a supporter of Autism Speaks. It's helpfully instructive to see her efforts from another perspective. (I mean, besides my wonderings. :P ) It's not clear to me that "normalization" must invariably be the best route.

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the key to my

[personal profile] delight
2009-05-11 03:20 pm UTC (link)
I'm not even entirely sure how I got to this post anymore, but: thank you. Thank you thank you thank you, from a high-functioning autistic who can't express herself too well.

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