Autistry: Autism and the Practice of Self
Unlearning what I thought I knew
This essay was originally published by the wonderful people at december magazine in 2019. Before it was accepted I got a telephone call from the editor explaining that they had almost decided to publish it but that they like to achieve consensus on what they publish and that not everyone on staff was 100% in favor of it. So they called in two board members to help make the decision and it was ultimately published and went on to be listed on the 2019 Notable Mention list in Best American Essays (Rebecca Solnit).
I’m thinking about trains,” says Sheldon, one of the characters from the popular television series, “The Big Bang Theory,” apropos of nothing.
“I’m thinking about trains going through tunnels.” Sheldon’s friends ignore him; they know he likes to announce the progress of his thoughts, at random. “Now I’m thinking about digging a tunnel to China,” he continues, “which is not, technically speaking, the impossible feat we were told it was as children.” His friends look up from their work, fond, mildly bemused, letting Sheldon be Sheldon.
SHELDON is almost certainly a young man on the autism disorder spectrum. As is Jonah, my fifteen-year-old. Jonah adores “The Big Bang Theory,” which his autism strategist recommended to us for its humorous portrayal of a band of nerdy young adult misfits who managed to survive their youth, quirkiness intact. It was Jonah who suggested that Sheldon might have Asperger’s Syndrome: he dislikes physical contact; he is brilliant but neither understands nor suffers the niceties of social discourse; and when things don’t go according to routine, he becomes anxious or even upset. Jonah likes Sheldon’s character but doesn’t necessarily identify with him. Autism is not an identity to Jonah; it is a diagnosis that was handed to him — to us — when he was five years old.
SINCE that diagnosis, like most parents of autistic children I know, I have researched causes and cures, consulted with specialists, advocated on his behalf with teachers and school administrators, sought treatment and services, tried special diets and joined support groups, strategized with my spouse and worked intensively with Jonah to prepare him for the social obstacle courses of birthday parties, play dates, summer camp. And I have wept. Railed and wept. Ten years into the diagnosis I continually adjust to what autism means for our family. Advocacy and awareness about the disorder have grown exponentially this past decade, and they have made an enormous difference in Jonah’s life and the lives of many others. But I confess I have lost interest in the latest statistics, the buzz about the newest treatment or therapy, the recent novel or film or memoir with an autistic protagonist. In autism’s cultural arena, I have lost — or I’ve never quite found — my way.
The waiting room features indirect lighting, soothing New Age panpipes on low. On the floor, Jonah reads through a stack of children’s magazines as I complete a several page diagnostic checklist. I’m not yet thinking about autism; I just know something’s wrong. Before the age of two, he knew his letters, shapes, colors, and numbers. By three, they had evaporated. He used simple sentences, but he preferred to make animal sounds. What does a sheep say? Baaa. What does a lion say? Grrr. By five, he was having meltdowns at school. Potty trouble, biting people. Even so, I feel relieved as I check “no” on a list of possible symptoms: distracted by bright lights? No, actually. Head banging? Definitely not. Shrinks from touch? Picky about foods? Trouble with changes in routine? No. No. No. He’s not affected, I tell myself. We don’t even need to be here.
IT will be many years before it occurs to me to question how the diagnostic checklist has already begun, in the words of Patricia Douglas, to “organize my perceptions about normality, pitting behaviors against a fixed norm.” By the end of the hourwith our new therapist, Jonah has become “autistic” — except she doesn’t knowhow autistic he is or what sort of autism he has. His official diagnosis is PDD-NOS: Pervasive Developmental Disorder Not Otherwise Specified. As one writer on autism puts it, PDD stands for Physician Didn’t Decide. It was as though they had given me back a different child, an autistic changling.
MANY parents of children with disorders know this feeling — what have they done with my baby? — the feeling you have for one moment, just prior to your resolve to do whatever it takes, against all odds, to make them better. If autism is what you have, there has never been a better time to have it. According to Autism Speaks, sixty-seven million individuals around the globe have some form of ASD — Autism Spectrum Disorder. Rates have climbed steadily for a decade, and with them have come earlier intervention and treatment, better health coverage, educational and legal services, family support and increased public awareness. An entire publishing industry has grown up around ASD. At least three companies produce books only on topics related to the disorder, and their lists are dwarfed by the overall number of books on ASD. Information has become downright profligate. Yet while the amount of information on autism has helped a great many children and families learn to cope and even to thrive, it has not brought clarity to autism’s causes, treatments, or classifications.
ASD is a catch-all term describing what has come to be called a “spectrum”of individuals from the profoundly autistic, who will probably never speak or live independently, to “high-functioning” types like Sheldon, and Jonah. Lack of clarity about what counts as “autistic” has resulted in misleading data. One year, almost everyone knew someone with Asperger’s Syndrome or had at least read Mark Haddon’sThe Curious Incident of the Dog in the Night Time or Jonathan Safran Foer’s Extremely Loud and Incredibly Close. Now, suddenly, Asperger’s Syndromehas disappeared, not because there’s a cure but because the DSM-5 (5th edition ofthe American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders) has eliminated Asperger’s as a category. More or less taking its place: SCD, or, Social Communication Disorder. While the changes are no doubt the result of increased understanding, autism is clearly a disorder in flux.
SECOND, we don’t know what accounts for the spike in rates of autism. Although probably a variety of factors come into play, researchers disagree about whether and how much it can be explained by rates of reporting, environmental factors, or factors such as region and social class. Third, controversy rages over autism’s causes. Mercury preservative in vaccinations? Vaccinations themselves? Environmental toxins? Genetic heritage? Leaky gut syndrome? Of course, disagreement over causes leads to disagreement about the cure. Does intense early intervention help? What about chelation therapy, the removal of heavy metals? Eliminating all gluten, dairy and soy? High doses of vitamin B shots? Digestive enzymes? Inositol? Did you know that zinc or folic acid in high doses might have prevented your child’s autism in the first place had you taken enough of it during pregnancy? Or that Oxytocin, the bonding hormone, helps autistic people feel empathy?
MEANWHILE, treatment communities bicker, one bearing a sort of cross, the other a sword: what is likely the nation’s most high profile autism organization, Autism Speaks, is devoted to eradicating autism and finding a cure. They lobby, they testify, they hold 5K runs and hand out tee-shirts and rubber bracelets that say, “Autism Speaks: It’s Time To Listen.” Some parents, convinced that autism is caused by vaccinations, have sought recompense for their children’s suffering all the way to the Supreme Court. Career scientists have been brought to their knees over the research that fueled these parents’ zeal, but the discredited data hasn’t changed minds all that much.
ON THE OTHER HAND, a vocal minority, including autistic people themselves, sport websites such as Wrong Planet.com or Ask an Aspie. They call for a “neurodiverse” society in which autism is “simply another way of being human,” and is accepted as a valuable form of difference. They don’t seek a cure, and they don’t need fixing, thank you very much. It’s “The Age of Autism,” as one blogger has named her site. Temple Grandin went Hollywood long ago. Autism novels and films and memoirs are runaway best-sellers, contributing to the familiar tropes of the precocious, socially inept, innocently destructive but lovable boy. Autism has even entered discourse in new, perhaps unsettling, ways: Ann Juracek notes that “autistic” has been used as a synonym for “apoplectic” or “ecstatic” and as a put-down for anti-social behavior, as in “You don’t have to get all autistic on me!” Next up: the criminalization of autism. Remember Adam Lanza, the Newtown, Connecticut killer? Yet, despite all of this discourse that contributes, whether for good or ill, to what autism means for individuals and their families, mainstream discourse has primarily concerned itself with what to do for and about autistic people. It has not yet taken on the question of how the meaning of autism gets made.
Kindergarten. Mrs. K would like to talk with us about Jonah’s recent artwork. The children were asked to paint a picture of “What Peace Means To Me” for the school’s peace celebration. Mrs. K points at a picture of a bright yellow, coiled snake and then looks at us, troubled. To help us understand, she shows us several pictures drawn by other children — proper pictures, correct pictures, in which weeping dogs who have had a disagreement now shake hands with one another, or squirrels wearing t-shirts with peace signs on them help pick up litter in the picnic area. Although I remain silent, I can’t help but notice Jonah’s beautifully drawn snake coils, his cheerful choice of lemon yellow. Instead of defending Jonah’s artwork, my husband and I nod in miserable agreement with his teacher. We are new at being parents of a school-age child. We want to raise a little over-achiever as much as anyone else’s parents. That means we have to toe the artistic line. “No, Mrs. K., a snake is not what peace means,” we say. Twelve more grades of this?
ON his first day of life, Jonah slept in a nursery crib next to another infant who obviously possessed a very different nervous system. At the slightest sound — a distant bump, a nearby laugh or cough — my baby responded with a jerk or a twitch, while the infant next to him slumbered on.
AS Jonah grew, his hearing remained acute; he often comment on background music (instantly recognizing many Muzak versions of songs instantly) or on other noises most of us have learned to ignore. And then there were his animal sounds always at the ready. It’s as though he had one ear cocked Beyond.I mention Jonah’s sensitive hearing because it was the first of his symptoms that I chose to read generously, you might say resistantly. That’s why, after his “failed” kindergarten painting, I realized I could have helped Jonah’s teachers appreciate the artistry of what he hand, in fact, drawn: the careful detail of the serpent’s eyes; its forked tongue.
I COULD HAVE questioned the merit of asking kindergartners to illustrate an abstraction, or, for that matter, of asking them to serve as peace surrogates for the grownups who can’t seem to get it right. And here is another possible interpretation: The phone call from Mrs. K came days before the United States invasion of Iraq and the bombing in Baghdad. The nation was tense, not only about the start of another war but about the spurious claims of our president that Iran possessed weapons of mass destruction — claims that ten years later, even some of the most hawkish members of Congress now admit were false.
I GET that Jonah probably ignored or did not understand the peace assignment, that he probably just drew what he felt like drawing because he wasn’t paying any attention to Mrs. K. I understand that my “resistant” interpretation is creative, and perhaps too generous. Then again, Jonah can pick up on the emotional climate of a room the moment he enters it, even when he’s not sure how to put it into words. Arguably, in March of 2003, a bright, tightly-coiled snake, ready to strike, was State of the Union — the emotional state of the union, in any case. What does a snake say? It says — peace? I’ll show you peace.
IN her book Constructing Autism, Majia Nadesan writes that the systematic ways we manage and talk about autism change over time. It is a product of its age, first noted by Eugene Bleuler in the early 1900s and by the 1940s, with the advent of Modernism and the discovery of the Ego, regularly used in diagnosis. Well into the 1960s, “refrigerator mothers” were believed to be the cause of their children’s disorder, according to Bruno Bettelheim, student of Freud. Treatment meant separating the child from his mother, often committing him to a mental institution and subjecting him to electric shock therapy. Brutal as that approach sounds to us now, the point is not to congratulate ourselves for scientific progress. What we think autism means and what we ought to do about it, Nadesan reminds us, are never natural or neutral beliefs.
DRAWING on the work of Foucault and others, she argues that because “autism” is regarded as a fixed condition, we tend to view it as existing beyond representation or change. Nadesan and others argue that, as with any social classification, how we define “autism” is the result of mostly unconscious interpretative practices and beliefs with far-ranging effects, beliefs that can be recognized and that should never be beyond inquiry. It is important to distinguish between disability, which is a cultural response, and impairment, an inescapable human fact of existence — for all of us, eventually. As Mark Osteen argues in Autism and Representation, “Autism is a relationship.” You have, on one hand, the disability, which is usually regarded as aberrant, even frightening; it has meaning, however, only because of and counter to the ways in which we define normal.
HOW we regard autistic people is connected to how we regard ourselves. So long as I believe that disability is an objectionable condition, I am anxious to remain normal (or to aspire to it). Normative categories can change, of course. The definition of a “white” person has changed many times in American history; that’s one example. But it’s also true that the general belief in “race” as a fixed or ontological condition has hardly budged. In other words, we define “Black” or “sexy” or “old” differently, but their definitions still obtain. Since I have no guarantee that my status regarding race, gender, ability, sexuality or other cultural categories will remain desirable over the decades, it makes sense that I would be invested in policing these boundaries, even if I don’t do so consciously. For the disabled, it’s always one-down, because disability is measured against what Patricia Douglas calls an “originary wholeness.” Which is fine so long as you overcome your disability; but, Mark Osteen argues, the narrative of triumph over a disorder suggests that those who must live with their condition (or choose to) — which is the majority of autistic people and possibly the majority of disabled people — somehow aren’t trying. They lack initiative, agency.
CONSIDER the “Autism Alert Card”— handy during unexpected encounters with law enforcement. If I am autistic, the front of the card asserts several key facts on my behalf. The back includes suggestions for how to interact with the individual, including, “Understand that my issues may or may not be apparent to me.”
I AM ON THE AUTISM SPECTRUM - I have Asperger’s Syndrome I have sensory, processing, and communication Issues and can become confused. I am covered under the Americans with Disabilities Act http://www.usdoj.gov/crt/ada
TRANSLATION: I may look like I should know what’s happening, but I haven’t got a clue. The card is an attempt to mediate the space, the lag time, between my initial encounter with an individual who has ASD and my apprehension or discernmentof his disorder. But the well-intended message on the card exacts a discursive price: autism is a condition that must be spoken for, it suggests. If autistic people attempt to represent themselves, they risk undesirable and unforeseen consequences.
Age ten. Jonah bounds up to a group of bigger kids who have taken over the swing-set. “Hi, Guys!” he calls. Tim and I exchange a wary glance. Faces glowering from their hoodies, the boys regard Jonah with dull surprise. One of them eyes me eyeing him, holds my gaze long enough to show me I don’t scare him. Then they all clamber up to the top of the structure, a rocket-shaped cage, where we can neither reach Jonah nor see exactly what’s going on. It’s way beyond his comfort zone to have climbed that high at all — at the State Fair the summer before, he froze on a swinging bridge; his father had to go in and get him. But it’s also typical, albeit not very autistic of him, to lunge headlong beyond his comfort zone in his desire to connect with others. Up in the rocket ship, one of the boys grips the iron bars and begins to rattle the structure. The rocket ship clatters and shivers to the whoops and shouts of the bigger boys and, somewhere, there’s a pounding that I realize is the boys’ feet stomping the metal meshing of the top floor. I ‘m on my feet. They’ll terrorize him: I’m thinking scarred for life, scarred for life. My husband is about to clamber up the rocket ship to save him, when suddenly, the rattling ceases, the whooping dies down, and one lone voice spills from the upper level: it’s Jonah, sounding at the top of his lungs the animal languages he once preferred to English: first lion, then wolf, grizzly, gorilla, monkey. The other boys slink down the fireman’s pole in the center of the of rocket and, hands shoved in their pockets, disperse. “Freak,” one of them says over his shoulder.
FOR MANY who theorize the encounter with alterity — the Other — every act of communication includes something inappropriable, beyond our understanding. For Patricia Douglas autism is a phenomenon made in the social space between us. She writes, “Might we...take a breath here, in this disorienting and confusing space of the in-between?” Douglas argues that mothers and caregivers of the disabled, inspired by an ethic of love and service, can read a kind of sense into this excess (what Emmanuel Levinas would call our ethical response-ability to one another) redefining what our culture regards as the failure of health or wholeness into a “moment of resistance and hope.”
HERE, then, is one possible reading: We‘re not sure where Jonah falls on the spectrum or how much it matters from a therapeutic standpoint. What we know is that Jonah is sometimes odd, he has to be reminded that he is odd and he doesn’t remember it for very long once you tell him. And yet my dear autistic changling once managed at least for a moment among a gang of neurotypicals to turn his oddness from that which made him vulnerable into his own defense.
THE term “autism” comes from the Greek “autos” or “self ” plus –ismos, describing an action or state. Most etymologies describe an isolated self or a condition of “morbid self-absorption,” and not just in English. According to novelist David Mitchell, the three characters used for the word autism in Japanese signify self, shut, and illness. In English, the word “autistic” by root meaning would indicate: auto or self (aut) + one who practices (ist) + quality of or relation to (ic). For example, an artist is one who practices art; when we say artistic, we mean someone who has the qualities of an artist. By extension, when we say autistic, we would mean someone who has the qualities of a self-ist. However, autism (unlike “artism”) is an involuntary condition: an autistic person (so far as we know) is not willingly “aut-ist.” His self-absorption is not self- study or the practice of selfness. Therefore he’s not technically autistic, he’s aut-ic or, perhaps, auto-ic: characterized by his relationship to the self. The root “auto” is found in the words automatic, automatan, and automobile: self- running. But how did we get from there to the notion of self-isolation? The closest I can come is the idea of extreme self-referential behavior — a continuous feedback loop to the self, such that the self never emerges as a social being or functioning personality.
STILL, I remain intrigued by the possibility of the “-ist,” of one who practices. What would happen if we viewed the condition of autism as a practice rather than a status or a condition? This is where we take that breath Douglas talks about, prior to assigning the culturally- informed order to the relationship in which “normal” and “autistic” take their proper places. An “autist” — one who practices “autistry,” if you will, might say or do something unpredictable, or do any number of things described on the autism card. With someone like Sheldon or Jonah, it might be the tendency to tell the truth without regard for the feelings of others. With profound autism, it might be moaning and hand- flapping, looking askance rather than making eye-contact.
RATHER than view these behaviors as the presentation of a diagnosis (autism) or the summation of a condition (autistic), autistry means we regard them as practices taking place at the border between neuro-typical and autistic, abled and disabled, normal and abnormal — practices that simultaneously unsettle and yet invest with possibility the social space between us. Not symptoms, but applications, if you will.
WHAT they have in common, is what Diane Davis calls an “inappropriable exteriority,” an excess always beyond and outside of us that cannot be reduced to intelligibility. For Emmanual Levinas, this excess constitutes the “saying” which is always discernible in what is “said.” Because we cannot typically see autism at first, an autistic person’s being hovers in the slightly elongated moment before we recognize thatsomething about the autistic person is off, odd, different. Levinas calls this an essentially ethical interval: between me and the Other who is about to be claimed by the category of autism lies our response-ability. Autistic. Neurotypical. Freak. Normal. These terms and so many others make us up, give us our identity. Michel Foucault says they govern us, even as they “fail to contain us.”
AND SO we are uncontainable. Every one of us. And if we keep one ear cocked to that “saying,” in ourselves and in the other, we make room for something more. A 2009 ABC news clip on You Tube with, by recent count, 363,464 views, features an interview by “Good Morning America’s” John McKensie with autistic teen, Carly Fleischmann. Having her own book, blog and cable TV program qualifies her as an internet sensation, but before all of that happened, this early interview capturesour awe at Carly’s ability to break through the confines of autistic isolation to communicate with her family and the outside world. Through the use of a computer keyboard and what is called Facilitated Communication, Carly tells what it’s like to be trapped behind out-of-control behavior such as moaning and flailing and banging her head against the floor — hard. “The reason I can’t look at you,” she explains, “is because I am taking 1000 pictures of your face. It’s overwhelming.”
BY ANY ACCOUNT, Carly’s triumph over her disorder demonstrates strength and determination that can’t help but inspire viewers. Still, in keeping with the question of how the meaning of autism gets made, Carly’s story deserves a closer look. In the early 1900s, Helen Keller and her teacher Ann Sullivan took to the lecture circuit, dazzling audiences with Helen’s literacy and her amazing ability to communicate despite being blind and deaf. But once Helen began to use her soapbox to talk about issues of the day rather than simply share her story, people lost interest. It was the fact that Helen could communicate that fascinated audiences. Her actual opinions (she sympathized with Socialism) were viewed by many as a distasteful by- product.
AS A TEACH of writing, I am fascinated by how much the story of Helen Keller and that of Carly Fleischman rely on language. According to Carly’s father, his daughter “became a real teenager” once she could use language to communicate. Clearly this young woman existed for her family in a very real way in the eleven years prior to her breakthrough. Their intense work with her from a very young age shows amazing dedication, hope and persistence. But in another sense, language makes Carly “real” in a way she clearly was not before she had language. Language legitimizes her in the eyes of others, and in a deeply important way to her father. Carly had to speak in order to have the meaningful relationship she now enjoys with him. For Carly, language is not just expressive, it is constitutive. The metaphors of entrapment here (not to mention the gendered language of penetration as rescue) draw from powerful, familiar tropes of autism.
IN ORDER for these tropes to work, an equally powerful set of assumptions about the act of writing comes into play. We must be willing to believe that the self exists “inside” Carly, trapped behind language until her prosthetic device, the keyboard, enables her to speak. A concomitant belief, one so pervasive as to seem self-evident, is that writing is the act of self-expression — that, as Sharon Crowley puts it, the writer “stands at the center of his thoughts and believe they begin with him.” This “composing subject” rests on the idea of a Cartesian split in which “I” am on the inside, the world is “out there.” For this to be true, although, increasingly, we know it is not, we must also believe that the self is presentable through language. You would be hard-pressed to find a creative writing classroom that didn’t operate by this expressionist paradigm. But in fact there is no evidence whatsoever of the self ’s inherence. The act of writing need not be viewed as documentation of the mind’s contents, and after post-structuralism, the persistence of a belief in individual authorship is essentially only mercantile. As Gilles Deleuze puts it in, “A Thousand Plateaus,” one’s head is “fundamentally, a crowd.”
WHERE is Carly when she falls silent? Where was she before she spoke/wrote? Most importantly, what would happen to her if she fell silent, again, forever? Carly’s presence through language is the restitution narrative we need to control the chaos of autism. To think about these questions is to recognize what tyranny the discourse of “normal” wields. Carly is writing for her life. Without words, Carly has no shot at “normal.” Therefore, as was the case for Helen Keller, nothing that Carly says is more important than the fact of her saying it. Writing is not the means of communication; it is the communication. What inspires me about Carly is not the “normal points” she gets by giggling about a boy she has a crush on or what she’s wearing to the prom. Her gift — her autistry — you could say, is that she is willing to encounter others at the outer edge of (dis)ability, where, if we are paying attention, she is clearly not reducible to the words she types onto the screen. On the contrary, she is riven with unspeakable awareness, this girl who cannot look at you because she is overwhelmed at the 1000 pictures her mind is taking of your face. A “normal” Carly never fully emerges; she is always arriving at that status through language, perpetually imminent. Each word, a world, but never a refuge. Each assertion — “I want to be a normal teenage girl” — not an identity but a point of departure, always in the space beyond profound autism and just prior to normal. Levinas writes of l’entre temps — the meanwhile — that space of transformative possibility or response-ability constituted by language, but also governed by its terms.
A TYPICAL ENCOUNTER using the identity categories that mean so much to us— black, white, able, disabled, gay, straight, Christian, Jew, and so on — for Levinas amounts to mere concept exchange. We think we already know the Other. We get what we expect, and we expect what we’ve learned through culture. And yet, “the practices that govern us fail to contain us.” We hear a saying in the said.
Is that a tree? That’s a tree. Is that a tree? That’s a tree. Is that a tree? That’s a tree. Is that a tree? The author of this monologue is Jonah’s good friend, Logan, who also has ASD. We are headed home from school (in a neighborhood that does have a lush canopy) and Logan’s little call and response — verbal stimming, really — continues longer than anyone should have patience for. It is easy enough to tell him to stopit. But Logan is in a great mood. You can tell it’s just sheer joy for him to vocalize, whether from the satisfaction of being annoying, or letting off steam, or maybe just indulging his inner Gertrude Stein.
ONCE, at the office, Jonah went out into a sudden thunderstorm and stood under the eaves, shouting at the top of his lungs although no one could hear over the gushing of the water. He came back inside, dripping and smiling and flushed. “When you do that it makes me have strange thoughts about you,” his therapist says. It’s like her mantra. And I know. I get it. The job of these dedicated professionals, which they do very well, is to help people like Logan and Jonah fit in. They are going to need to fit in. But sometimes I think, really? You’ve never wanted to dash out into a thunderstorm? Normal can’t meet us halfway? I am not invested in Jonah’s having any particular relationship to his autism. Now that Jonah is a young man, however, the stakes are higher: In training sessions for parents, we have learned that if you don’t know the hidden social rules of urinal protocol, you could be open to bullying or sexual predation. If you can’t at least fake a respectful attitude when pulled over for a traffic violation, you could find yourself in jail. If a potential sex partner says “yes,” but you can’t read the subtle clues that really mean “no,” you could earn lifetime membership on your state’s Sex Offender Registry.
FORTUNATELY, Jonah lives in a time when his autism is less likely to be used against him. He might even choose to become an autistic activist. I am pleased for the movement’s voice, but I don’t see “autistry” as activism or as another badge of identity. Self-definition comes at a cost. Your prestige means nothing without my mundanity. My normality depends on your disability. Levinas sees all forms of identity, while inescapable, at the same time essentially violent. Even in communities defined by their distance from normal — in the deaf community, for example — there are members who aren’t “deaf ” enough. Some mixed-race people are not black enough. It is not the terms themselves that are the problem. The normative practices that underlie them police us all.
PERHAPS we sustain the metaphor of autism as entrapment because it does poetic service. Isn’t it human to be filled with worlds of inexpressible content?Isn’t that what poets are for? Deep inside, aren’t we are flailing and rolling our eyes, banging our heads repeatedly on our walls of shame and flinging ourselves into the furniture of our past? To believe so, we must also believe in the illusion that the self is separate from the world, named, ordered, possessing a status beyond question. But I see Carly Fleischman as “cruising the limits of meaning” as Diane Davis puts it. Like Carly, I believe we are writing for our lives. Language is not “inside” us, it limns the edge of what is possible, always bringing us into being through the necessary and ruinous tendencies of words. A tree again and a tree and a tree.
SO WHAT is the hope of the autist? We can learn to listen to that excess in any encounter, as Jonah has long been teaching me. And in this recognition, this interval, encounter exposes us to one another as never fully knowable, and as therefore offering always something possible —“unlearning what I thought I knew” in Levinas’ words. For Patricia Douglas, a mother’s love “allows the touch of alterity to move the world between us.” It is a world we could say is fraught — with possibility.