Telling It Like It Is: The 3 Fries Day (#39)
A Live Letter to Charlie (#41)

Say It With Brown Noodles: An Essay on Representing Autism (#40)

Representation is always at stake in writing about autism, whether by an autistic person or by an individual--a parent, scientist, psychologist, or other autism professional. In Charlie's life, he and his autism are always being represented by some "neurotypical," by a teacher in his communication notebook, by a therapist on a progress report, by me here. And the quandary in representing autism is that those who are being represented are, all too often, unable to speak back and up about themselves. I write about Charlie knowing that I may be very wrong about what he experiences, and that it may be a very long time before he uses language to tell me; that it may never happen.

The issues raised in writing about and representing autism are referred to in an essay, "Autism as Metaphor," by Polly Morrice, in today's New York Times Book Review. Morrice describes a recent "wave of fascination with neurological quirks" and discusses autistic characters in contemporary works of fiction such as Stephen Wright's M31: A Family Romance (1988) and Sue Miller's Family Pictures (1990), and, more recently, Gennifer Choldenko's Al Capone Does My Shirts (2004) (and a number of other young adult novels) and Mark Haddon's The Curious Incident of the Dog in the Night-time (2003). According to Morrice, Wright's Zoe (who "slams her head against walls, yelps and echoes other people's words") and Miller's Randall (who stops speaking at the age of 4 and does not develop like a sort of "failed Peter Pan") have the traits of "severe autism." Characters in more recent (1990's) young adult fiction are "more reader-friendly," and "sometimes speak fluently and have savant skills." These characters are more and just like the rest of us, who develop and display emotion and affection, whether falling in love or hugging their parents, unlike the self-injurious, non-verbal characters of earlier novels. The autism of the Zoes and the Randalls can be read as a metaphor for their dysfunctional families: "Should writers be held to account for putting a metaphorical spin on a disorder that affects so many real people?" Morrice asks.

Morrice's essay could also be titled "Autism as Fiction" as it chiefly considers literary representation of characters who either display autistic traits or are overtly identified as autistic. Autism is in use as a(n often pejorative) metaphor for a kind of non-human, machinelike emotional frigidity in contexts ranging from the economic to the political. Morrice describes Haddon's The Curious Incident of the Dog in the Night-time as "less a mystery than an exploration of how [the narrator, who is identified as having Asperger's Syndrome] Christopher's mind functions" and finds his "utter remoteness from his family" as the "least believable aspect of the novel," rather than his incredible talent for math. Christopher's extreme emotional reserve towards other humans can be seen as corresponding to a stereotype of autism characteristic of the severely disabled characters in Wright's and Miller's fiction.

I appreciate finding references to autism in books other than in yet another "parents' guide" to my child's disability and see Wright's "'jungle daughter'" Zoe and Miller's silent Randall, and their place in the narratives of their respective novels, as symptomatic of earlier cultural (mis)understandings of autism, of the cultural moment in which those novels were written. On the other hand, what Morrice (who notes that she has a child with "some of Christopher's traits") terms the "impulse to unearth autism in the classics," in literature ranging from Sherlock Holmes to Melville's "Bartleby the scrivener" (in a paper presented at the 2004 Annual Meeting of the Modern Language Association), an enterprise of limited returns. Morrice sees this as arising from an increasing awareness of autism and a "current vogue" for diagnosing historical figures (Michelangelo, Thomas Jefferson) with autism and/or Asperger's Syndrome. I've begun a study of cognitive disability in the ancient world--exploring fetal deformity and ancient views of stupidity--and am constantly aware of the danger of applying modern concepts (including "disability") to ancient Greek and Roman texts and reading them anachronistically. The attempt to retroactively diagnose autism in historical figures is related to a question often raised about not only the literary portrayal of autistic characters, but also in any written, linguistic representation of autism: Is this "really" autism? How authetic is this account?

This question of authenticity--of how accurate is a book's portrayal of autism--has occurred often in conversations I've had with English teachers, writers, speech therapists, among others about Haddon's bestselling novel and its 15-year-old narrator, Christopher. A short biography notes that "as a young man, Haddon worked with autistic individuals," to prove, I suppose, his first-hand experience with autism. My own experience has shown me that teachers and therapists, who spend many concentrated hours teaching and working with Charlie day in and day out, have a deep and priceless knowledge of him in ways different from my own. Charlie, as I've recounted, has his share of the behaviors of severe autism (as Morrice describes them), is plenty affectionate, and has no savant-like abilities. But perhaps the real question is, why is there this demand for, this insistence on, an "accuracy"--on truth--in the representation of autism? I find myself unable to read any third-party account of autism, whether by a novelist or a psychologist or other professional, without questioning the accuracy of its portrayal of the disability I fancy I know in and out; without weighing how autism is represented against my own experience.

And here is to me the most interesting and the most compelling question in regard to autism and fiction, autism as literary metaphor, in any writing about autism, the question of how autism is represented. Most writing about individuals with autism is not by individuals with autism; one of the chief characteristics of autism is a difficulty in using language socially and functionally, in the pragmatics of language. More and more writing has been published by autistic persons, such as Temple Grandin's Emergence (1986) and Thinking in Pictures (1995), Birger Sellin's I Don't Want to be Inside Me Anymore: Messages from an Autistic Mind (1995), Tito Rajarshi Mukhopadhyay's The Mind Tree (2003), and Dawn Prince-Hughes's Songs of the Gorilla Nation: My Journey Through Autism (2004). But, while Charlie can talk, it's Jim and I who do the majority of explaining him in language, of representing him.

Jim drove up to his office on Saturday and Charlie--after the previous evening's jaunt down to Philadelphia--lay down and jumped on the couch, hung out in our frontyard (and into the neighbors' driveways), looked at photos of his "favorite peepul" on the computer, put the garbage can in the living room opened the bin with the rice and got out the hot dogs for his lunch, stomped on the hardwood floor as I played "B'ahms lullllaby" and "Swing Low, Sweet Chariot" on the piano. He swam for forty minutes straight in the deep end of the pool, had pool fries and a long hot shower. At home I noticed his hand in the garbage and a stringy thing on his lip. It was Chinese take-out his babysitter had accidentally left in our fridge; I had tried to put it at the bottom of the garbage, but Charlie has an eye and a nose for detail (like the drop of red paint).

"It's dirty, Charlie." I pulled out the container and, as I went to put it in a separate bag, Charlie cried out and hit his head lightly on the floor. He lay back down on the couch and moaned quietly, requesting "Daddy's blue blanket." I wrapped him in it and sat at his feet. And he stopped crying and got up to sit at his computer, asking to see "Charlie Daddy McDonalds. Charlie Alphabert. Charlie phodos Kristy dinner!"

"Let's get brown noodles for dinner," I said. "Brown noodles? I want brown noodles," Charlie perked up, we dumped the leftover take-out en route to getting them (rice noodles with peanut sauce and shrimp, to be more exact), Charlie ate, played, smiled at Jim's return ("socks on, Daddy, I want socks off"), and fell asleep with me on the couch.

That's something of a day in my life with autism, from my perspective as mother and "neurotypical" adult. I would think that Charlie would tell it differently. From what he said, he would put in a lot more about colors, and the scene of Barney and the Backyard Gang doing the "Family Song" he reenacted using a purple chair, a green bunny (known to Charlie as "teddy bear"), and a pile of four-year-old photos, and watching for the "green car" from the window. I try to write "just the facts, please, ma'am," as I wrote in Telling It Like It Like It is: The 3 Fries Day (#39). My ever-potential misinterpretation and misrepresentation of Charlie and of autistic experience makes it all the more imperative that, in writing about Charlie, I try to record what I see, as objectively as I can. I spend a lot of time "reading" Charlie's behavior and words to figure out what he's thinking because language is not his easiest mode of expressing himself.

I was the respondent on the 2004 MLA Annual Meeting panel that included the paper describing the autistic traits of Bartleby. More than simply noting that this and that aspect of Melville's "I would prefer not to" scrivener is characteristic of autism, Stuart Murray describes the character's "autistic presence" as a tool for reading the narrative. Murray reveals the "neurotypicality" of the story's own account of Bartleby's difference and suggests that Bartleby is a marker of "another way of being human" as is Haddon's Christopher. Thus do such representations of autism, and the questions they raise in us about "whether this is really autism"," assist us in the huge project of understanding "what autism is." The challenge to most readers--most neurotypical individuals--is to resist ("to prefer not") the easy explanation of the "neurotypical account" and to try rather to engage ourselves with and in an autistic consciousness and an intelligence that is very, neurologically, different.

Getting Charlie those "brown noodles" told him "everything is fine, I love you," more than the words. You and I might understand "brown noodles" to be a metaphor of our love for Charlie; to represent our desire to show him that love. To Charlie, it's my suspicion that those sounds--brown noodles--mean a big bowl of rice noodles in brown peanut sauce with shrimp, and are (and I interpret, I intuit) the love Charlie knows Jim and I always have for him.

This essay, like much else in my life, was made possible by the quick wit and good driving skills of JTF who--for all that, as he cell-phoned me, "I've never parked a car at Kennedy airport, but I've driven a cab here more than once"--is an autism dad par excellence and Charlie's and my best friend.


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