Divided and Opposed: Autism and the Parasituation of Disability

by Woody Brown

The following is a paper I gave at the 48th meeting of the Northeast Modern Language Association (NeMLA) in 2017. The project has its roots in disability studies research I conducted at the University at Buffalo, and specifically in courses I took with Prof. Joseph Valente on representations of autism and representations of disability in modernist literature.

“A simple assumption motivates this study: everyone has to be somewhere.” 

– Disability Historian Susan Burch, 

“‘Dislocated Histories: The Canton Asylum for Insane Indians”

Autism is the site of a bicameral structure that dominates every consideration of human subjectivity and embodiment; namely, the question of whether biology or cultural influence is primarily responsible for the genesis of the subject.  This eternal argument goes by many names (nature v. nurture, nature v. culture, psychogenic v. biogenic, medical model v. social model, etc.), all of which are structurally synonymous.  Irrespective of their specific referents, these left and right hands of our symbolic understanding reach an impasse when faced with something that is, in Lacanian terms, real.  Charles Shepherdson sees this particularly with respect to the question of race: “We might say that race is something real, not in the sense that it refers to a prelinguistic reality, but in the sense that it exceeds our symbolic grasp” (Shepherdson 2008, 178).  Indeed, the “prelinguistic reality” would be biology, which is not actually a prelinguistic reality and which does not and cannot provide a complete account of race or, as we will see, autism.

Nature and culture, whether understood as mutually exclusive or as interactive and codependent, are as a rule insufficient when used to come to terms with the real.  This is definitional: if the real is what “exceeds our symbolic grasp,” then coming to terms with it would mean integrating it into the symbolic order of language, which would mean it would not be real.  Attempts to do just this result in a striking denaturing.  Scientific discourse uses Darwin to reduce race, for instance, to a solely evolutionary development, despite the myriad ways that race serves no purpose in both natural and sexual selection.  Referring to the widely held belief that dark skin color is an adaptive response to increased exposure to the sun, Jared Diamond notes that “when one takes into account cloud cover, peoples of equatorial West Africa and the New Guinea mountains actually receive no more ultraviolet radiation or hours of sunshine each year than do the Swiss” (Diamond 1994, 88).

Explanations of this sort abound in the study of autism, both in the discourse of the material sciences and in that of critical autism studies.  A consideration of the true nature of autism, which is that it has no single true nature, will reveal the disorder as a scene of a multitude of conflicting representations.  An examination of autobiographies and biographies written by autistic writers and their caregivers along with research conducted by scientists, clinicians, and theoreticians will illustrate in stark contrast a near-total lack of nosological consistency in the category “autism.”  At the same time, we will pay close attention to a curious quality shared by each of these biographies: a unique preoccupation with the autistic subject’s place in capitalist society. These accounts will reveal that autistic characters are, in a word, parasituated—situated as parasite—with respect to the symbolic order.  I will show in the ensuing pages that parasituation is an essential aspect of representations of disability, fictional or nonfictional, even those that seem to represent disability in a positive, productive light, and that this reveals a truth fundamental to the genesis and experience of disability.  I will focus primarily on autism, both in the interest of time and because autism for several reasons is uncommonly representative of the symbolic position of disability.

SCIENCE AND THE “AS YET” CLAUSE

The desire of the material sciences, including genetics and neuroscience, is the reduction of autism spectrum disorders to the product of a genetic abnormality, though none has as yet been discovered.  The “as yet” clause of the previous sentence can be found in virtually all scientific literature on the subject, the implication being that though we have not discovered a single cause of autism or even a coherent explanation of what it actually is, we will.  For example, Judith H. Miles in her review of genetics and autism writes, “On the basis of the high-heritability index, geneticists are confident that autism will be the first behavioral disorder for which the genetic basis can be well established” (Miles 2011). Miles wrote that six years ago, but her prediction has yet to be realized.  This “confidence” and the “as yet” clause presuppose science as a totality, a discourse with no lack, a theory of everything.  Indeed, this is hard to dispute, considering science’s reliance on logic and the scientific method, two tools which seem inherently beyond reproach.  The “as yet” clause historicizes science and contextualizes any result or lack thereof within the larger narrative of human progress to which scientific discourse views itself as instrumental.  That is, we may not have found an answer yet, but that is not because, for instance, our approach is predicated on the foreclosure of the subject, but rather because of simple historical circumstance: given enough time, science will incorporate all.

All biogenic accounts face many difficulties, perhaps the most problematic of which is autism’s constitutive heterogeneity.  There is no single isolable symptom or biological abnormality that is both universal to all diagnoses of autism and unique to autism as well (Schreibman, 2007; Lenroot and Yeung 2013).  Additionally, any proposed “core deficit” autism might have (disregarding for a moment the extensively problematic nature of a deficit-based model of autism or of disability generally) must also “show persistence, meaning that the deficit continues to affect the individual during the developmental process” and “precedence, meaning that it begins early in development” (2007).  To date (or as yet) nothing that has all four of these qualities has been discovered, but the intrepid, categorizing machine of scientific discourse marches on. The autistic subject is thus reduced to a category, and even if that is a category that freaks the subject, it still incorporates the subject into the symbolic order as freak, which is the ultimate aim of science.  This effort of categorization, however, is completely disrupted by the constitutive heterogeneity of autism.  It seems, in fact, that the only essential aspect of autism is its lack of an essential aspect.

A primary focus of autism research by Uta Frith, Francesca Happé, Simon Baron-Cohen, and others is weak central coherence theory.  Briefly, the claim is that autistic subjects have “an intense focus on small pieces and thus an impaired capacity to give a unifying explanation to ‘local’ information” (Mills 2008).  Disregard for a moment the fact that this inability to “see the forest for the trees” is curiously absent from many autistic autobiographies and caregiver biographies (which we will discuss momentarily).  Note instead that autism as a category itself has weak central coherence: it has no nosological consistency.  In each of the aspects upon which classification is based—pathogenesis, etiology, and symptomatology—autism is effectively a wildcard.  Regarding etiology, possible genetic abnormalities have been proposed, though none has been confirmed (see again Miles 2011 for a review of genetic research on autism).  In terms of pathogenesis, the research has yet to show a brain structure or structures that is responsible for the extensive and widely varying symptomatology of autism.  And speaking of symptomatology, autism comprises everything from a general tendency to avoid eye contact and exceptional skill with musical instruments to destructive and self-injurious behavior, epilepsy, and a complete lack of verbal linguistic ability well into adulthood.

A result is that popular representations of autism pick and choose which symptoms to give an autistic character.  Mark Osteen has written extensively on the trends these representations perform, which he calls “a set of rules that these stories follow and that have threatened to collapse autism’s diversity into a menu of formulas” (Osteen 2013).  These “rules”—that the autistic person must be a savant, that the autistic person “must be charmingly quirky but not too severely disabled,” that the autistic person “must be a catalyst to advance” neurotypical moral progress, and that the autistic person must be cured—are not exactly rules, however (2013, 262).  Many narratives of autism do not use one or more of them (Rain Man (1988), for instance, does not end with a cure).  Perhaps Osteen’s is more a commentary on the nature of narrative in general: it cannot sustain the truth of something like autism.  As Osteen writes, “Perhaps, I suggest, the written word is an unsuitable medium through which to portray autistic lives” (2013, 261).  This strikes me as unconvincing, however.  For one, why is it an unsuitable medium?  Because narratives of autism tend to follow rules?  Certainly that is true of all narratives, which either follow rules or pointedly refuse to follow them (and, by doing so, follow them).  And what is it about the medium itself that is unsuitable?  Osteen suggests that “visual media… offer more adequate means to narrate autism,” despite the fact that the ur-narrative of autism in popular culture is the film Rain Man, which is so committed to the first three of Osteen’s rules that it seems anachronistic today.

In general, these rules contribute to the fetishization of the autistic subject qua primitive other.  There are many names for this archetypal representation—the Magical Negro, the Noble Savage, the Happy Shepherd, the Manic Pixie Dream Girl—all of which label an individual from an othered class who is still of instrumental value to the referent subject (i.e. the white male, the colonizer, or the neurotypical).  The implication is that these kooky freaks may be strange and often disturbing, but that their bizarre behavior communicates a secret, other knowledge that we in our supposedly hypertechnologized, stainless steel world no longer have access to.

It seems implausible that the narrative tendencies Osteen isolates signify the fundamental unfitness of print media to inscribe autism.  All media have so far had significant trouble inscribing autism.  The disorder’s wide spectrum of ability, its near complete lack of internal consistency, and its sometimes disturbing symptoms require extreme attention on the part of a writer or filmmaker.  Even then, narratives of autism are almost predestined to face accusations of bias and exclusion: a presentation of an autistic character as “high-functioning”—that is, with excellent verbal skills, something resembling the abilities of a savant, and perhaps mild social discomfort—is guilty of omitting the less attractive, more debilitating side of autism.  Conversely, a presentation of an autistic character as “low-functioning”—nonverbal, self-injurious, perhaps violent—would be guilty of omitting a depiction of the happy, fulfilling, rewarding lives many autistic people enjoy.  This is not a product of some fundamental unsuitability of the written word and neither is it a matter of simple historical circumstance (i.e. the one good, inoffensive depiction of autism simply hasn’t been created yet).  The latter proposition would imply, as the “as yet” clause implies of science, that nothing exists that cannot be fully incorporated into the given discourse.

Importantly, as Osteen notes, the problems of fictional accounts of autism “characterize virtually all nonfiction autism stories, particularly parent memoirs” (Osteen 2013, 268).  Far from the brief side note Osteen accords it, this is the revelatory crux of the discussion of autism and representation.  Even the primary sources, the sources that relate the ostensible truth of autism, cannot avoid the pitfalls to which fictional representations fall prey.  Osteen’s own narrative of his autistic son Cam (2010), for instance, certainly falls prey to his third rule, that the autistic subject should advance the moral progress of the neurotypical character (in this case the narrator, Osteen himself).  Throughout the course of the first two decades of Cam’s life, Osteen and his wife Leslie remark time and again that they are learning from their son’s autism, that it is teaching them and that the lessons of his life have made them better than they were before.  At one point Leslie threatens to leave Osteen should he continue to refuse to address his anger management problems, problems that were only revealed when faced with autism as irresolvable irritant (191).  Should we doubt that Osteen is telling the truth of his experience?  And either way, does it somehow condemn Osteen’s biography because it follows one of his rules?

Of course the answer is no.  An examination of a narrative, in the words of James Agee, “may reveal more of the ‘true’ ‘truth’ than any more direct attempt upon the ‘true’ ‘truth’ itself” (Agee 1988, 203).  Representation, by definition, can but represent, and the act of representation results in a necessary and structural denaturing.  This is as true of representations of autism as it is of representations of any other sort of life.  We must, if we are to bear witness to the truth of autism, perform the Freudian gesture, the fundamental generosity of psychoanalysis, which says: I will listen to everything you say, even what you omit and, by omitting, say.

The frankness of many biographies of autistic people is refreshing when compared with the repressive protestations of many others.  In the interest of time, I will move directly to a consideration of Osteen’s own narrative, though the genre is a diverse and growing one.  Osteen, who recounts his wife’s and his experiences in the exceptionally moving One of Us: A Family’s Life with Autism, eventually institutionalizes Cam as well.  There is an irreducible ambivalence to their account.  Osteen describes “feeling uplifted and utterly bereft” (2010, 256).  Later, he declares, “Cam’s life—and our life—is much better than it was in 2001” (260).  Still, he evidences what Freud calls a “dissatisfaction with the ego on moral grounds,” feelings of guilt and self-reproach that both address the decision to institutionalize Cam and preclude Osteen and Leslie from enjoying the relief that that decision achieved (Freud 1917, 248).  In the end, however, the predominant experience is liberatory: “In our new, semi-independent life, the sound has died down enough for us to hear each other at last” (Osteen 2010, 262).

Economy demands that the subject agree to and fulfill the terms of a contract, the pleasure principle: the fundamental exchange of unlimited jouissance for language.  The autistic subject, however, simply enjoys.  To be sure, this is not a description of the experience of being autistic, and neither does “enjoyment” necessarily mean “having a great time.”  Rather, this is the neurotypical construction of the autistic subject position.  Autistic people have not entered into the symbolic in the neurotic (neurotypical) fashion, and so they are not subject to the symbolic prohibition of jouissance.  Until the autistic subject does this, until he works and pays his dues “like everyone else,” he is, medical diagnosis notwithstanding, a misfit, a parasite.  This accounts for a common trope of representations of disability that would otherwise seem inexplicable: the supernatural savant.  Because the disabled subject is understood to have somehow avoided making the compromise, his position both outside and inside the symbolic allows for him to be represented as having an uninhibited path to an often excessive enjoyment (like the epileptic ecstasy of the Delphic oracle), a special ability to count numbers or objects (as in the famous toothpick scene in Rain Man (1988)), and occasionally precognition (see Osteen 2013 for a comprehensive examination of these and other tropes).

In the neurotypical eye this is insufficient to qualify the subject for membership in the world.  Some exchange must be made.  Consider Clara Claiborne Park, author of The Siege, one of the foundational life narratives of autism, whose appreciation of her autistic daughter Jessy’s artwork hinges neither on the therapeutic effect painting has on Jessy nor on the accomplished and original paintings she produces, but rather on the value imposed by market demand.  As she notes with pride, certain of Jessy’s paintings are archived in a museum, but the majority of them reside in “many private collections” (1967, 302 fn.).  This is not enough to redeem Jessy, however, and Park continues to deny her many of the elements of capitalist citizenship, including the right to vote: “I don’t know if I can, if I want to, if I should, propel Jessy into a citizen’s responsibility.  Yes, she pays taxes, the concrete sign of it, and she understands at least some of the things that taxes go for.  But can I take her to register, knowing her interest rides on the simplicity of an obsession?” (2001, 152).  Her interest, then, is a mere imitation of neurotypical interest, the latter of which Park suggests is more genuine.  We hear here echoes of Baron-Cohen, who maintains that autistic subjects can only imitate empathy; any appearance of “real” empathy is simply “cold calculation” (McDonagh 2013, 34).  Park also has no qualms about approaching her daughter’s striking artwork with comments that sound both diagnostic and critical at the same time.  “Like her comic books,” Park writes of Jessy, “her dreams are derivative rather than imaginative” (2001, 180).  Regarding a drawing Jessy makes of her father with her own foot pictured in the foreground, Park writes, “What child of five has not absorbed the social knowledge that you don’t include your foot in a picture of your father?  But Jessy drew what she saw.  It is the mind, not the eye, that selects”; the implication being that Jessy lacks a mind, apparently, or at least the specific module whose purpose is to make the decision not to paint a foot (123).  All this despite the fact that Jessy does in fact hold down a job, save money, and pay taxes diligently.  She even contributes $5,000 when her parents, both of whom are tenured professors with relatively few sources of fiscal strife, wish to remodel the kitchen in which Jessy jubilantly bakes them cookies.

Money is the only thing that validates Jessy’s artwork according to Park.  “[Jessy] made an accurate, ugly sketch of the ugly building we were meeting in, a man who’d heard my speech offered five dollars for it, and that’s what started her career” (126).  Park’s reference to her speech, which she gave at an “autism meeting” and which was about parenting Jessy, suggests that she does not think the sketch was purchased for its own merit, but only because its value was anchored by the achievements of her mother and by Jessy’s status as a medical curiosity, a savant.  “The staff at the Society for Autistic Children were very kind; they gave her a little exhibition, and sketches and school paintings were sold for small sums,” Park writes, as if the only reason for the event was the Society’s generous condescension.  Even the money Jessy earns with her own artwork, which she makes by herself, is tainted in Park’s eyes.  It is not a real achievement because it is “derivative” and people only buy it because they either feel bad for her or because it is artwork produced by an autistic person—if a neurotypical person, a “real artist,” had painted Jessy’s pictures, Park suggests, then they would be rightfully derided as unremarkable and amateurish.

Faced with the errant subject, the wandering autistic person who can willfully, “stubbornly,” move within and without the symbolic order at whim, capitalist discourse attempts to force participation in the economy.  The primary instrument of this is the exorbitant cost of therapy and medical care, which in several narratives actually demotes families of autistic subjects to lower rungs on the ladder of the American socioeconomy.  Osteen, for instance, at Cam’s behest must sadly accept into his life the fast food that caused an argument with his wife Leslie on the eve of Cam’s birth—an argument over Kentucky Fried Chicken that Osteen, in a dark moment, briefly considers as having played a role in bringing about Cam’s autism.  Rankin, already working class, must weigh each decision she makes heavily in order to avoid accruing debt she could never hope to repay.  Barron must drive all over Ohio in search of therapists that are both affordable and helpful—a tall order in the 1970s made no shorter by the passage of time.  And, as every memoir makes clear, the families’ hands are tied: if they make even one decision to cut costs with respect to medical or therapeutic expenses, the lack of a known cause or cure for autism means each such maneuver is equally likely to be the one that condemns the autistic child to a life of misery.

Around the autistic subject capitalism piles mountains of costs in an effort to shore up the subject’s place in the symbolic order.  While this grants the transgressive subject a single defined slot in the card catalog of the world, it also restricts his movement.  Attached to the wires of an fMRI while a Lovaas therapist holds his wrists and balances M&Ms on his nose, the autistic subject is stabilized and immobilized.  An instrumental view of these facts of autistic life necessarily omits the one factor that matters most: autistic subjectivity.  This is the reason that research on autism must refer to the lived experiences of autistic subjects.  The true nature of a life lived with autism is strictly incidental to investigations conducted in the names of the two valences of contemporary discourse.  This discourse has a troubling tendency to omit aspects of autistic life that directly contradict theories and observations that would otherwise seem to hold up.  Crucially, these theories and the diagnoses they influence affect radically the allocation of public funds for the treatment and assistance of people with autism and their families.

The argument between nature and culture presents two sides of the same coin, each in clandestine collusion with the other.  The coin, however, is a metonym for the structure itself, capitalism, which is in turn a synecdoche for the symbolic order.  To understand the real of autism, more than the eternal dynamo of bivalent argument is required.  The answer cannot purchased with a single coin, as it were.  It may require an examination of the purse itself.

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