My commitment had a slow-motion feel to it. As it was happening, I couldn’t believe that it was happening — I was daydreaming, or I was watching a poorly written Lifetime biopic, or I had eaten moldy leftovers that triggered hallucinations, or something, anything but reality. But, no. This was my reality, and my reality soon spiraled into the progressive tense, into something like this:

– They were strapping me down on a gurney.

– They were wheeling me out of an academic building and into the parking lot, onlookers gawking.

– They were forcing me into an ambulance.

– They were dragging me, still on the gurney, into the psych ER, which resembled a TV prison — brisk security guards, cheap wall paint, steel-enforced doors, cameras that aren’t supposed to look like cameras but inevitably do look like cameras. They were dragging me in there. There.

– Soon, they were vigorously frisking me, and they were dumping out the contents of my backpack, and they were treating me like I was a criminal because I carried a bottle of Tylenol and a 3-inch autistic pride button, and they were shoving me, now shoeless and sweaterless, into a doorless room with hard-backed chairs, and they were prohibiting me from making any phone calls unless I did so via speakerphone, and they were threatening me with overnight and multiple-day stays and refusing to let me wear my headphones, and they were mixing up my diagnoses while periodically asking, How are you doing, sweetie? — As if they really cared. As if I were a sweetie.

Before the EMTs bundled me, pig-in-a-blanket style, into the ambulance, my former therapist asked me why being committed was such a “bad” thing. “If you have to ask that question,” I fumed, “then you really don’t have a clue.”

That pre-ambulance moment, to the best of my memory, is when their ventriloquism started. Suddenly, the experts claimed, I wasn’t talking. God, no. That’s your depression talking, they explained. That’s your autism talking. That’s your anxiety talking. Really, it’s anything but you talking.

Hours later, I sat in the psych ward, shaking, rocking, stimming, ticcing — anything to prevent epic meltdown mode.  I was disembodied. Objectified. Powerless. I was freezing, hunkered up against the wall in my new doorless home, watching an eight-year-old kid being forcibly removed from his parents. How do I not headbang? How do I not bite myself? How do they not see our humanity?

–

I have gotten used to not existing, rhetorically speaking. I study rhetoric for a living. I teach it. I have a PhD in it. I breathe it. Rhetoric is everything and everywhere, many of my colleagues say. The exception to rhetoric’s everythingness and everywhereness is, of course, autism.

I’ve reached a point in my adult life where articles on autism and perspective-taking inspire me — inspire me to commit self-injury, that is. Rhetoric is about audience and autism isn’t, these articles say. Autistic people are mindblind; autistic people are masked by a cloud of social solitude; autistic people are self-centered and shrouded by their neurological misery. I grossly paraphrase here, but not really.

And so, I have gotten used to not existing, rhetorically speaking. I will say something about autism, and someone will assert that nothing I’ve said matters or applies to anything. Because I’m self-centered. Because I don’t have the capacity to intuit other minds or understand others’ life experiences. Because it’s just my autism talking.

How can one have autism and have something to say? Autistic voice is the ultimate oxymoron. If they don’t want to hear it, then we haven’t spoken. We don’t matter because we don’t exist. We’re just a bunch of absent sweeties waiting to be strapped onto their gurneys.

That’s just your autism talking, they respond.

–

It is weeks later. I’ve been working, shaky and paranoid, scraping by in an already rough semester, a semester made rougher by male orderlies who find sensory overload amusing.

I am teaching a disability studies course, and it’s now November. We’re reading Dawn Prince-Hughes’ Songs of the Gorilla Nation, an autiebiography. I’ve never had a full class read it before, and I approach the class discussion with an excitement that I haven’t felt since my pre-commitment days.

Something transpires in this discussion, a something that jars me. Some of the students don’t think there’s a plot to Prince-Hughes’ book, that it’s too bogged down in details. Some of them wonder whether her autism made her write this way — some of them doubt her intentionality, her rhetoricity, her capacity to understand writing and audience and perspective-taking. In short, they wonder who’s really talking: Is it her or her autism?

I offer this moment not to reflect poorly on my students — my students are students, people who are kind, receptive, bright, and willing to learn. Rather, I offer this moment because it is iconic and pervasive, because students (and faculty, and parents, and clinicians, and, shit, most people) have learned this response from those who came before them. I offer this moment because I’m pissed off at those who taught them this. I offer this moment because, after it transpired, I flashbacked to my commitment and my forced disembodiment. I offer this moment because I am me, because I am an autistic me, because my autism is not a synonym for demon possession. I offer this moment because I locked myself in a bathroom stall and began cutting my leg with my 3-inch autistic pride button.

–

I recently dreamed that I was forced into a special education class for assistant professors, my 3-inch button affixed to my backpack, bloodstained and visible. This was a waking dream, an unrestful dream, a dream filled with groans and body twitches. The button was how I knew I had a body; the wakefulness was how I knew I had a voice.

But that’s probably just my autism talking.

I figure that a good post-hiatus post might involve what I’ve been up to lately that is non-dissertation — that is, teaching. This past quarter, I taught an undergraduate section of Intro to Disability Studies, the second time I’ve taught this course. And in the fall I’m teaching a special topics in literature course called Authoring Autism. I kind of figure that folks who read my blog will have a lot to say about the autism class in particular.

Above is an image of my course flyer — I’ve been posting these across campus. I decided on going the “famous people who might have been autistic” route not because I like to retrodiagnose dead people (I loathe doing that, actually), but because 1) retrodiagnosis is one among many topics I’d like my students to critically engage this fall, and 2) I was hoping to attract students, especially from the humanities, to my class. Class enrollment is up to 18 people, which is pretty good for a special topics course. < /explanation>

I’ve drafted a syllabus for the course, which you can find here in PDF format. I’d like to emphasize that it’s a rough draft, and I’m already making changes in the assignments, schedule, and readings (i.e., I’m adding in materials from the neurodiversity special issue of DSQ, giving students more memoirs to choose from, figuring out potential guest speakers, etc.). I’ve also included my course description behind the cut — at root, this is a course that considers how autism and autistic people are represented across media.

I am, however, open to suggestions. Ohio State terms run 10 weeks in length, so we’re limited with our time. But I’d very much like to find out what others in the blogosphere would like to see in a class like this.

Course description: Public discourse on autism has reached critical mass. It’s hard to open a newspaper, change a TV channel, or browse a Facebook profile without catching something about autism—the epidemic, the puzzles, the children, the charities, the discrimination. The CDC currently touts a 1 in 110 autism incidence rate; former Playboy bunnies claim that our government is poisoning children with heavy metals and dairy products; popular TV shows feature unemotional autistic characters with savant-like super powers; and college programs are molding the most autism-centric cohort of disability service professionals our country has seen to date. If we’re to believe anything we encounter in the media or popular literature, we can certainly believe that autism is everywhere and has the potential to touch anyone at any time.

With this supposed increase in autism has come an increase in texts about autism (across media, across genre), much of it volatile and emotionally charged. Our main objective in this class, then, is to consider the rhetorical import of these texts, to develop an understanding of autism as a complex and crucial part of the human experience, to examine the ways in which able-bodiedness (or neurotypicality) has become an invisible default. We’ll work together in exploring how the authors of these various texts aim to persuade an audience that their view is the most emotionally, ethically, or logically sound view. To that end, we’ll also investigate the many important issues—legal, social, cultural, medical, political—currently at stake in the autism world. Throughout the term, we’ll continually engage popular, literary, and scholarly representations of autism in print, film, and the blogosphere in light of the following questions: What does it mean to be an autistic person? What does it mean to be an autism parent, professional, or advocate? What does it mean to author autism?

I’m happy to say that my POS passed (!), and I’ve begun tackling my reading list. I’ve here posted the descriptions of my field, focus, and dissertation, if only because they deal with autism and rhetoric in a large way. Of course, things are subject to change, and my thinking will evolve, I’m sure. But nonetheless, this seems to be an accurate picture of where I’m at right now.

Field || Digital Media and Composition
During my tenure as a Master’s student, when I first began identifying as a compositionist, I was heavily under the influence of Richard Fulkerson’s “Composition at the Turn of the Twenty-First Century.” Fulkerson asserts that, in order to effectively teach a writing course, compositionists need to consider four major questions—questions of axiology, pedagogy, process of writing, and epistemology. In other words, when we, as teacher-scholars, consider and promote “good” writing, what/whose values do we promulgate? What do we assume about knowledge and meaning-making, and in what ways are our assumptions ideologically imbricated? I believe that recursively engaging Fulkerson’s questions leads to an even larger matter, one more thematically pertinent to my exam, to my ever-evolving sense of composition as a field: what does it mean to write or to compose in the twenty-first century (Selfe, Technology)?

It is with these questions that I find myself tethered to digital media studies, to the field of digital media and/or/as composition. Embedded in Fulkerson’s questions are questions of definition and being, questions of what writing itself is, of what texts are (Bolter). In what ways do we privilege alphabetic texts on a printed page—and how have these models of traditional writing been naturalized in the composition classroom? How does adherence to traditional, print-based composition diminish the importance of alternative forms of communication and meaning-making?

My own view of writing, as I approach my exam, is a multimodal one, one that considers multiple sensory channels in the making of meaning. In exploring multimodality and 21st-century writing, I look to the work of Kress and Van Leeuwen, who conceive of modes as semiotic channels through which we derive meaning—and media as the materials we use for producing multimodal texts (22). Traditional, alphabetic writing is itself a multimodal phenomenon, perhaps even a synaesthetic one, a phenomenon that might engage or mix writers’ senses of sound and/or sight (how does it sound? how does it look?), or their sense of touch (feeling the pen or the keyboard). Yet, in the academy, we privilege one medium (the printed page) for the transmission of a multimodal phenomenon, a medium that arguably excludes a large number of readers. What assumptions are made about audience when we privilege traditional texts and traditional ways of composing? And, as Fulkerson might ask, what composition processes are deemed as essential, as “right,” as “good”?

In addition to employing Fulkerson’s heuristic to composition theory, I believe we need to consider the affordances that digital media might bring to composition—the changes (or stasis) that digital mediation brings to academic genres, academic discourses, academic rhetorics, the distances bridged between composer and audience. Of course, in reconceiving traditional writing, I do not wish to naively forward multimodality and/or digital media as an accessibility savior. Yet, critical theories of media and modality, access, and audience, I would posit, undergird how we think about composition studies and digital media studies—both as distinct fields and as overlapping fields.

Although I recognize that composition studies is a broad, wide-ranging field with its own unique histories and theories¹, my own interests lie in a particular subset, that which intersects with digital media studies. Similarly, digital media studies is a field in its own right, one that stretches across disciplines in the humanities and the computer sciences and includes theories of technology, philosophy, performance, and social communication (Knievel). I believe that my defined field—digital media and composition, itself a distinct discipline with a 30-year history—both shapes and is shaped by composition studies and digital media studies as separate fields.

Because of these overlaps, I have divided my field reading list into three sections: composition studies, digital media studies, and digital media and composition. Though this categorization is somewhat contrived, I do wish to consider digital media and composition as both integrated and separate entities. My list contains texts that consider history, theory, and practice in all three categories.

Focus || Disability Studies
Though I realize that there are many overlaps, I see two major points connecting my focus to my field—issues of axiology (or, questions of value) and issues of access (or, questions of in/exclusion). Within the past two decades, many compositionists have come to understand “good” writing as a social negotiation among community members, as rhetorically catering to one’s audience (Bartholomae; Devitt, et al.; Ede and Lunsford, Singular Texts). The problem with this current configuration, I would posit, is that, even as teacher-scholars, our conceptions of audience are largely “imagined” to be a non-disabled audience, an audience filled with what Rosemarie Garland-Thomson has coined normates (Ede and Lunsford). In addition to audience, we might also examine how the other ends of the rhetorical triangle, those of writer and message, have been normalized in composition studies. Teacher-scholars still, despite much debate in the field, revert to metaphors of diagnosis and detection, of blindness and deafness in their descriptions of student writers (for examples, see Flower, “Writer-Based Prose”; Gruber; Villanueva, “Blind”). Furthermore, in academia, the printed page is the primary vehicle for intellectual activity, and writers are construed as able, literate, and/or educated in accordance with their ability to encode or decode messages via this medium.

Persisting in composition studies is the ideological belief that traditional writing and intelligence are somehow inherently linked, that traditional literacy is central to defining one’s intellectual worth (Graff). This ideological understanding of composing masks the notion that writing is simply one among many systems of making and conveying meaning, that “writers” do not necessarily privilege “writing” as their primary form of communication, that among our “readers” are those who cannot always access the messages delivered within print-based texts. If we limit our definition of writing to alphabetic text on a printed page, we need only question what medium we privilege in order to grasp which audience members we privilege—and those whom we exclude (Davis, “Deafness”).

In academia, conversation has become trope—a metaphorical exchange occurring on printed pages rather than literal, interpersonal, face-to-face communication. Embedded in composition scholarship is an assumption that students best learn, think, and write by means of alphabetic text on a printed page (Bolter). I believe that studies in digital media and disability give us reason to think otherwise (for digital media, see Anson; Miles, et al.; for disability, see Wilson). Disability studies allows us to perceive the ways in which traditional writing—and composition studies’ investment in traditional writing—normalizes and has been normalized by our understanding of “the” rhetorical triangle (Dunn, Talking 150). In some sense, as evidenced by recent discussions on the Writing Program Administrator listserv, digital media technologies such as screen-readers or social networking web sites are commonly perceived as assistive technologies, as tools that help those with disabilities better approximate normate writing and normate discourse. Yet, if we revisit the Spring 2002 issue of Kairos (titled “Disability: Demonstrated By and Mediated Through Technology”), we can begin to recognize the differences between digital media as assistive versus digital media as accessible or inclusive: the former, depending on the context, can imply that the writer is somehow lacking and is in need of a technological tool to make up for this lack, whereas the latter moves toward recognizing digital media composing as a valid and valued form of intellectual communication and exchange (Duffelmeyer; Miles, et al.).

I would offer that digital media studies, in conjunction with accessibility concerns, can aid us in unmasking these naturalized assumptions about communication and meaning-making, can aid us in moving toward a 21st-century, synaesthetic, multimediated theory of writing. As scholars in digital media and composition have argued, traditional theories and practices of writing are (and should be) shifting, especially if we diversify audience in terms of disability, race, gender, nationality, class, sexuality, and other markers of difference (Anson; Wysocki). Who does digital writing allow us to reach, and how does it let us do so? In what ways can digital media render writing and writing pedagogy more accessible, more inclusive? (And, lest I sound too optimistic about digital media and the potential for access and universal design—who might digital media exclude (Banks; Selfe & Selfe)?)

Of course, disability studies is a rich, dynamic field that, despite its overlaps, finds its roots outside of studies in digital media and composition. Borne out of activism in the 1960s, disability studies, generally speaking, is concerned with a social model of disability, where societal barriers and discrimination are more disabling than any so-called disability or form of bodily difference (Linton; Robertson and Ne’eman). A humanities approach toward disability has much in common with cultural studies and other theories of diversity (Powell). For example, comparisons have been made between the civil rights movement and the activities of the Deaf community, and parallels have been drawn between gay pride and autistic self-advocacy movements (see Robertson and Ne’eman; Autism Hub).

Through this social model, individuals have reclaimed the word disability and have embraced their identities as (dis)abled, even referring to normate populations as being “temporarily able-bodied” (Heilker, “Autism and Rhetoric”).  Memoirs and other personal, narrativistic forms of life-writing have functioned as one major lifesource for disability advocacy—and, perhaps most relevant to my areas of interest, the blogosphere has also served an important role in activist movements (Couser; Wilson). Because disability is an inherently personal and embodied identity, my disability studies reading list contains memoirs, novels, blogs, and narrative theory, in addition to scholarly texts that position disability studies within composition and/or digital media. I believe that these narrativistic texts are pertinent to the questions posed above concerning axiology and access—specifically, how (dis)ability affects our conceptions of audience and how it is we conceive of “text” and “writing.” Finally, as Paul Heilker has argued, the 1974 CCCC position statement on Students’ Right to Their Own Language has potential applications to the study of disability and composition because it invokes questions of value within the context of language and culture—and disability communities arguably occupy and form their own unique cultures (e.g., Deaf culture, autistic culture) and their own unique dialects and languages. Each of my reading lists contains texts by authors who grapple with the complexity of what writing and language are, and thus what it is that we as teacher-scholars value or privilege in/as writing and language.

Dissertation
My dissertation is directly tied to the themes touched upon in my field and focus descriptions. At this moment in time, I expect my dissertation will be divided into sections concerning 1) media and modality, 2) access, and 3) audience. Though these three topics relate to many key topics in disability studies, I plan to focus my research on autism specifically: I hope to explore certain key issues within popular autism discourse, namely, 1) representation of/for/by autistic individuals, 2) medical constructions of autism and autistics, and 3) common binaries/categories used to describe autistics (e.g., high-functioning vs. low-functioning). These issues shape our cultural conceptions of autism and autistics, which, in turn, shape our conceptions and our pedagogy in the composition classroom. Below, I briefly describe how consideration of media and modality, access, and audience might encourage different ways of talking about writing, teaching, learning, difference, and what have conventionally been considered disabilities.

Media and Modality. Digital media technologies—especially blogs and social networking sites—have enabled the autistic community to connect and to “speak back” to powerful, normate-run charities such as Autism Speaks without having to meet face-to-face, without having to worry about nonverbal nuance, without having to experience sensory overload, without having to worry about discourse conventions specific to traditional forms of writing (Clark and Van Ameron; Robertson and Ne’eman; Wilson). Many of these so-called autistic worries have been medicalized, with the sensory experiences and social communication of autistics being construed as neurological dysfunction in need of cure—an approach that many autistic individuals ardently resist (for examples, see the Autism Hub). If we as compositionists construct autistic writers as neurologically diverse rather than defective or diseased, how might we reconsider our axiological assumptions about writing and digital media?

Access. As G. Thomas Couser has commented, the affordances that digital media lend to those with disabilities are not widely available within the generic strictures of the publishing industry, which often call for “typical,” formulaic narratives—such as the triumph novel, or the sentimental/pity-me novel—when the topic involves disability. Accounts that disembark from these formulas are not as marketable—and, as a result, many autistics who advocate neurological diversity rather than cure find themselves relegated to the blogosphere while charities control popular and cultural discourses surrounding autism (Garland-Thomson). Of course, these examples of narrative perhaps lie within the realm of genre more than they do media. Yet, media are inextricably tied with our conceptions of genre, writing, and access. For instance, recent composition scholarship has painted autistic individuals as inherently, rhetorically clueless writers: acute attention to detail and lack of transition statements have been depicted as symptoms of autism in dire need of treatment (Jurecic, “Neurodiversity”; Yoder). How might we reconceive academic genres and acknowledge—or, I daresay value—autistic discourse conventions within traditional writing? How might we involve digital media as we strive to make writing more accessible?

Audience. A common medical construct in scholarship regarding autism involves empathy: autistic individuals supposedly lack what has been termed “theory of mind,” or the ability to imagine the mental states of others (Baron-Cohen). In terms of rhetoric and composition, teacher-scholars have connected this lack of empathy to lack of audience awareness, assuming that autistic writers are egocentric and self-centered because they cannot connect with a neurologically typical audience (Baron-Cohen; Jurecic, “Neurodiversity”). From a disability studies standpoint, however, I believe we need consider how the amorphous audience concept in composition studies has been normalized—that is, how audience has come to exclude those with disabilities, or, in this case, autistic individuals.

Methodology. Without prematurely committing myself to a data set, I anticipate analyzing discursive trends within the blogosphere, particularly blogs belonging to the Autism Hub, an online community that approaches autism from a positive and neurologically diverse perspective. Additionally, my research might also include interviewing a very small sample of autistic college writers who are active in these online advocacy movements. In sum, I hope to examine constructions of autistic writers both in and outside of the composition classroom, and I also wish to consider the communication affordances that digital media might offer autistic individuals. Finally, because I do not want to privilege the printed page as my sole medium of transmission, nor do I wish to assume that all of my readers are self-identified normates who prefer to read, think, and learn via traditional alphabetic text, I anticipate that my dissertation will include digitally mediated components.

–
¹ Composition studies traces its immediate history to the development of writing-specific courses in the mid-1800s, with sustained study and graduate-level programs having emerged only within the past 40 years—a stark contrast to the emerging subfield of digital media and composition, which is even more nascent (Brereton; Miller, Textual Carnivals). Michael Kneivel and others have set the birth date of digital media and composition within the mid-1970s, and the first major journal within the field, Computers and Composition, came into being in 1983.

Frequently, when I suggest that autism doesn’t need a cure — or that many autistics don’t want a cure — I’m greeted with the following retort: “You shouldn’t be cured. You’re high-functioning.”

Ah, yes. I’m a high-functioning autistic. As a result, unless I agree with Autism Speaks’ video manifesto, I don’t count.

There are some huge problems with this high-functioning/low-functioning binary. Namely, it’s a medical construct, and, as such, both sides of the binary are frequently used to suit the purposes of people who aren’t autistic. We don’t have a stable definition of what high-functioning is, again, because it’s a social construct: if one is able to speak, is she high-functioning? If one is able to attend college, is she high-functioning? If one is able to make eye contact, is she high-functioning? If one can speak but can’t work, can cook but can’t drive, can read existential philosophy but can’t add single digits, can hug on demand but can’t stop a head-banging binge, can mimic smalltalk but can’t modulate the volume of her voice, can pass in short bursts but can’t refrain from hand-flapping, is she high-functioning?

I’ve been told that I not only seem to have high-functioning autism, but high-functioning high-functioning autism, as if my new aim should be for threesies — high-functioning high-functioning high-functioning autism. How wonderfully echolalic. (If I say this three times out loud, do I have to move back two steps?)

The Autistic Bitch from Hell wrote about the problematics of the HFA/LFA divide in a 2006 blog entry. She suggested that if we take any other marginalized group and insert “high-functioning” as an adjective, wars ensue. The examples she presents are as follows:

“She is a high functioning woman; unlike most women, she can live independently.”

“He is high functioning for a black man; he can keep a job.”

When people say, “Wow! You’re smart for someone with Asperger’s,” I never know whether I should 1) smile meekly, or 2) punch them in the face. I usually go with gut feeling #1 because I’m polite for a person with Asperger’s. (As if rudeness were one of the DSM IV criteria for Asperger’s.) </sarcasm>

Why all this compare and contrast? Why one extreme or the other? Why shove diverse individuals into either/or categories? In essence, functioning level involves the extent to which an autistic’s personality traits match up with the expectations of particular neurotypicals. When others denote me as a high-functioning autistic, there’s still an assumption that I’m malfunctioning, because no matter how “high” I am on the grid, I’m never just plain functioning. And when autistics are coined as low-functioning, the assumptions made involve malfunctioning on warp overdrive. If we’re ever going to remove autism from the funk of puzzlehood, then we need to stop with these malfunctioning robot allusions. It’s as though we’re labeling some autistics as gaming PCs with a few missing processor chips, and we’re labeling other autistics as ribbonless, keyless, cordless typewriters circa 1883. HFA and LFA are attempts to technologize autism — and not positively, either. Like many an aspie, I love my computer, but I certainly don’t empathize with it.

So, by this warped HFA/LFA logic, if I’m the hottest PC from Best Buy who happens to be short a few RAM sticks (and also happens to have a processor from, say, the 1990s stone age), then how can I claim that 1883 typewriters don’t want a technological upgrade? I mean, sure, I’ve got a few screws loose myself, and even though I’m slow and sometimes emit weird smoke or freeze with the blue screen of death, I’m an otherwise quirky machine who generally gets the job done. I’m worlds away from that horribly damaged typewriter.

This machine metaphor is horrid and inaccurate, but it’s the mental picture I have when I hear people discuss autistics and functioning. And it perpetuates division upon division, stereotype upon stereotype.

It saddens me that some of the more prominent writers in the autistic community — Donna Williams, Temple Grandin, Thomas McKean — take this approach. Donna Williams, author of Nobody Nowhere and several other books, often writes of her world before language and uses this language-less distinction to separate the auties from the aspies. And though I don’t discount the diversity of the autism spectrum, and nor do I discount the fact that Williams’ autistic experiences are different from my own, I don’t see the utility of an aspie/autie or HFA/LFA division. I also have to wonder if what Williams describes as a language-less realm is interpreted as, indeed, languageless by other so-called LFA auties: the person who immediately comes to mind is Amanda Baggs.

Of course, I don’t want to re-define or question Williams’ experience. I can’t pretend to know her past and present worlds. I do wonder, though, how it is we’re defining language when it comes down to the LFA/HFA divide — because, certainly, not speaking or not understanding verbal speech shouldn’t render one languageless. (What about hand gestures, or repetitive movements, or grunts and moans? What about sign language? What about typing? What about FC? What about self-injury?)

Additionally, I don’t think that this so-called language barrier between aspies and auties should define how we advocate as a community, nor should it split us into two opposing communities. According to the DSM IV, all autistics, by medical definition, have “impaired” language/communication, whether verbal or non-verbal.

This binary brings me to an autistics.org article, Who Can Call Themselves Autistic? Here, the authors respond to Thomas McKean’s 2006 “A Danger in Speaking.” McKean writes of the autism conference circuit, denouncing speakers who have self-diagnosed as autistic and also casting suspicion on those who were officially diagnosed in adulthood. McKean reasons that the self-diagnosed and the adult-diagnosed have little to no place in the conversations surrounding autism. Although McKean poses some valid concerns about self-diagnosis (after all, we don’t want autism to become a teenage internet fad), what he doesn’t acknowledge are the obstacles certain autistics face in obtaining diagnostic testing. Those who are “high-functioning” adults have typically been misdiagnosed with disorders that never fit, or have been institutionalized or wrongly medicated because the “autism” of 1993 wasn’t the “autism” of 1994. Moreover, insurance companies rarely cover autism-related expenses. Testing can cost anywhere from $600 to $5000, depending on where one lives. Additionally, both age and gender complicate autism diagnosis: adults learn to compensate for their autistic “oddities,” and women often present as “milder” cases. Additionally, very few specialists are equipped to deal with autism diagnosis, some even believing that only emotionless, monotoned boys age seven or younger can be diagnosed with Asperger’s.

In short, McKean claims that self- and adult-diagnosed autistics haven’t “suffered” like he has, yet he ignores the fact that these autistics have “suffered” in ways that he hasn’t. Moreover, in Asperger Syndrome Employment Workbook, authors Meyer and Attwood maintain that official diagnosis should never be imposed upon autistics: rather, those who do not wish the stigma of a medical label can accurately claim autism if their self-diagnosis is “peer-confirmed”:

Every AS person deals with diagnosis and disclosure issues in a unique way. If you are self-diagnosed, your diagnosis should be validated through the comments of other adults with AS. This is called ‘self-diagnosis, peer-confirmed.’ Many self-diagnosed AS adults refrain from diagnosis for as many reasons as there are individuals. (33)

The self-diagnosis debate isn’t something that I’d like to get into any further, though I do offer the argument that any person who identifies as autistic is also self-diagnosed, whether officially diagnosed or not. I see self-diagnosis as self-identification and official diagnosis as being identified. (And, yes, in case people are wondering, I’ve been officially diagnosed, unofficially diagnosed, self-diagnosed, misdiagnosed, and peer-confirmed — and not in that order. How many hoops must one jump through to really be autistic? Or maybe the real hoop is the “cure” hoop?)

McKean’s logic, as described by the auties and aspies at autistics.org, is this: if you don’t want a cure for autism, then you need to prove that you’re autistic, because it’s 99% certain that you’re not really, truly autistic.

Questioning someone’s diagnosis is part-and-parcel with the HFA/LFA binary. These designations fail to account for the spectrum that is autism, a non-linear spectrum, at that. And, of course, if we truly want to dismantle this “functionalization” of autistics, what do we say to those autistics who do the opposite, the ones who claim that autistics who want cures or hate autism aren’t “real” autistics? Writes McKean,

What you do not have a right to do is to claim that a cure is wrong for everyone. Until you have met everyone with autism in the world, until you have gotten to know them, you simply cannot make a blanket statement like this.

My response to this, which is always evolving, causes me to wonder if it’s actually cure that such people are after. The dialogue that GRASP tried to start with Autism Speaks on the cure debate is one such illustration of the cure confusion. When autistics reference cure, do they desire to become entirely new people, the sort of brain-transplant cure that neurodiverse activists decry? Or, do they mean societal acceptance, or accommodations, or reduction of one “symptom” such as sensory overload, or medical treatment? Because if autism truly is what modern science describes it to be — genetic, neurological, and brain-based — then, indeed, a cure for autism would involve major brain rewiring or prenatal testing and abortion.

I have more to say, but this post is too long. So I’ll stop, muse some more, and come back to this.

So, as I now listen to “September Song” for what is probably the fiftieth time today, I am also trying to complete a “map” of what I want to complete (and when) in my independent study this term. As I mentioned a couple of weeks ago, I’m focusing on autism, rhetoric, and representation. I’ve so many things that I want to read, and I keep having to tell myself that I only have ten weeks to accomplish this, and it’s hard for me to figure out what a workable reading load is. This past weekend I wanted to read a couple books written by parents of autistic children (including Jenny McCarthy’s book — and not because I like Jenny McCarthy’s ideas). However, I ended up on a rabbit trail of sorts, and ended up re-reading Michael John Carley’s Asperger’s from the Inside Out. (I suppose he counts as both an aspie AND a parent of an aspie. So I wasn’t completely off track.)

I also finally worked up the nerve to email a professor in the field of rhetoric and composition who has been doing work with autism. I wasn’t sure whether or not it was socially appropriate to email random professors at different colleges because of e-stalking I’d done via Google and CCCC electronic conference programs. So, I spoke with a couple of non-random professors (a.k.a. my professors) and got some tips on what to say (and what not to say). After spending three days writing the email and having two fellow grad assistants read over what I’d written, I finally hit “send,” and actually got a response — a very pleasant, encouraging, and helpful response. He sent me several pieces he’d written, and so I decided to read those in lieu of vaccine-bashing narratives.

I’m really excited to finally connect with people in my field who are looking at rhetorical and social constructions of ASDs. It’s hard to talk about my interests in autism to non-humanities people a lot of the time. It’s not their faults, necessarily: we just have different disciplinary approaches, and the things I’m interested in are wrapped up in language and philosophies about meaning-making and axiological assumptions, not studying brain functions or therapeutic interventions.

McCarthy’s talk of cure hinted at witch-hunt — specifically geared toward the elimination of any and all autistic traits, or elements of autism. She made clear that her son was not an autistic: he was a person with autism. Now, I’m all for semantics, especially since, from a disability studies standpoint, politically correct parlance includes disabled person or person with disabilities rather than the disabled — the key difference here being that the latter does not use the word person. Elimination of person removes more than mere letters: it removes the humanity from the person in question, conjures images of partial personhood rather than wholeness. I get this distinction, and I agree with it.

However, as a person with a form of autism, I don’t really make this distinction — of being “with” something rather than just being that something. In a lot of ways, I prefer to be called autistic or Aspergian rather than with autism or with Asperger’s. Being someone “with something” makes it sound as though, should that “with” and “something” be removed, I’d still, essentially, be the same me. And, quite honestly, I don’t believe that to be the case. As I’ve stated in a previous entry, I often cannot distinguish between my autistic symptoms and my personality traits. Am I quiet because I have autism? If I didn’t have this disorder, if my brain were rewired, would I suddenly become garrulous? If I weren’t Aspergian, would I still have an excellent visual memory, or would I suddenly be a learner of different sorts? Would I still be detail-oriented and drawn to patterns? Would I still experience synesthesia? Would I still love Jeff Lynne and the Electric Light Orchestra? Would I have facility with road maps and bus schedules? Would these “elements” occur or exist with the same unabashed intensity?

The above questions, of course, are rhetorical and unanswerable. That McCarthy could believe — or pretend — that she has the answers baffles me. I have to reiterate that I am *not* against her want of helping her son, of her doing everything possible to help him “function” in a “mainstream world.” But this cure stuff, this crap treatment stuff, this MMR stuff, all on Oprah – it bothers me. Sincerely. Treatment of negative symptoms is worlds away from cure, especially with something as developmentally rooted as autism.

Truth be told, sometimes I even like my negative symptoms, or my less desirable personality traits. At times, I’m glad to have few to no friends and acquaintances. I enjoy solitude and despise speaking. I like pacing — I really like it. I like talking to myself and staring at mirrors. Shiny and spinning objects are quite nice things, and I honestly wish I could dissertate on ELO. I can’t conceive of things being any other way.

No offense meant to neurotypicals. Honest.

[Click for larger image.]