FYI: Autistic Women and Autistic Writers Exist, and They Might Even Be Modified by Adjectives Such As “Successful” Rather Than “Egocentric” or “Mindblind”

Posted on February 8th, 2010 in blog rants by Aspie Rhetor

I’ve been going through old computer files lately, and I realized that I never posted the paper I read at the Feminism(s) and Rhetoric(s) conference that took place at Michigan State this past October (the week before our protest of the Autism Speaks walk, actually). So, here it is — my essay.

—-

“Melanie,” she writes, and I imagine her doing so in an armchair, a red velvet armchair, this woman annunciating each syllable of my name, if only to make sure I comprehend her—“I hope as we go forward, Melanie, I hope you come to understand that at many levels what does and does not apply to you”—I stop reading, grind my teeth, poke my tongue in a developing cavity, if only to make my wince more wince-worthy—and continue on with her letter. “It’s not meant to personally challenge you,” she blathers, “but are the observations and ways of those with very different life experiences. Other people have different life experiences than you, Melanie, but I understand how difficult it is for you to put yourself in others’ shoes.”

I stop reading. It is difficult for me to fit into others’ shoes. My feet are incredibly narrow size nines, and I often fall out of my shoes—my shoes. And then there was toddlerhood, me walking so feverishly and insistently on tiptoes, my mother recalls, that the doctors considered cerebral palsy! (with an exclamation point) and hurriedly put my legs in casts below the knees, then braces, only to find out that it wasn’t cerebral palsy, that it wasn’t a symptom of anything with a legally recognized name, at least not anything legally recognized in the U.S. until 1995, at least not a symptom of anything other than Melanie being Melanie and what the hell is wrong with Melanie? There are empaths, and then there are dis-empaths—and as a teenager I was pegged into that escapably inescapable designation, that of the autism spectrum disorder, the one that, if you believe the charities, creeps into your child’s room at night and steals her soul, steals her ability to walk flat-footed, steals her ability to recognize, as the blathering woman in the imaginary red velvet armchair put it, that “other people have different life experiences.”

So much of my childhood was a search for an explanation—a search carried out by my parents, pastors, teachers, counselors, and the elementary school kids who liked to beat me up at recess. One day it’s selective mutism, and the next day it’s all my mother’s fault. One day it’s “let’s get a CATSCAN and make sure she doesn’t have a brain tumor,” and the next day my guidance counselor asks if my father has ever touched me. (And me, being ever the literal-minded autistic, says “yes”—is it illegal for fathers to touch their kids?) Once the Asperger’s autism designation descended from the diagnostic heavens, my capacity to empathize was suddenly eaten up by malfunctioning neurons. My capacity to engage in social relations or maintain eye contact vaporized alongside my personality. My capacity to have capacity was called into question. All these discourses, all these incapacities. Discourse about autism, I think, is far more virulent than autism.

In fact, discourse about autism has reached critical mass. Media outlets harp about the so-called epidemic, likening autism to a fate worse than pediatric AIDS, cancer, and diabetes combined. As of this past week, the autism rate has changed from 1 out of 150 people to 1% of the total population—1 out of 91. Not only this, but autism is said to affect mostly boys, the new statistics reflecting an incidence of autism in 1 out of 58 boys. These days, when I read and hear the numbers, when freshmen at my university tell the campus newspaper that these numbers are “so alarming,” alarming enough for them to fear procreation—I think to Lennard Davis’ work on disability and normalcy, specifically, when he describes the entire field of statistics as eugenics. Davis notes, “Statistics is bound up with eugenics because the central insight of statistics is the idea that a population can be normed. An important consequence of the idea of the norm is that it divides the total population into standard and non-standard subpopulations. The next step in conceiving of the population as norm and non-norm is for the state to attempt to norm the nonstandard—the aim of eugenics” (6).

When I am a number—a gendered number at that, and I mean gendered number both literally and figuratively, because I’ve synaesthetically thought of numbers as being gendered since I was a kid—but… when I am a number, I’m a number to be avoided. A number meant to instill fear and alarm. A number meant to warn parents that I could happen to them. A number that signals the dissolution of marriages and other gratuitous disability-induced horrors. A number that borrows its soundtrack from that classic, repeated knife-stab move in slasher flicks. I can see and feel the numbers as eugenics—all too visually, all too tangibly.

But the fraughtness of autism discourse neither starts nor ends with numbers—it involves our very conceptions of autism and its overlaps with gender, involves that tired misconception of autism precluding empathy, emotion, and personhood. Kidnapper imagery abounds in PSAs and billboards; popular nonprofits mourn the loss of the children that never were. And as reprehensible as these mass-mediated representations are, perhaps more concerning to me (out of my own autism-induced self-centeredness?) (I pose that question snarkily) are the professional discourses that affect me, us, you, them—any and all of us who hold some connection to the amorphous numbers. For as much as we’d like to dismiss the autism-as-thief trope as the next of the myths du jour, such myths find their realities in the various professional discourses that surround autism and the numbers and the gender and empathy issues. In medical discourse, autism is disempathy. It is, as psychologist Simon Baron-Cohen notes, a case of the “extreme male brain” (3). According to Baron-Cohen, autistic people are logicians and systematizers—characteristics in supposed contrast to femininity and empathy and social skills. Autistic neurology is so phallic as to penetrate unsuspecting female minds and make male any and every idiosyncrasy. Scholars in the mood for retro-diagnosis take delight in postulating Emily Dickinson was autistic, or that idiosyncratic fictional characters such as Jane Eyre were autistic. While certainly the autism rate remains higher for boys at a 4 to 1 ratio, the key characteristic for all autistics, per Baron-Cohen, is neurological maleness—such that autistic girls and women become doubly disabled: first by a merciless soul-stealer, and then by a chronic gender-reassigner.

I think to all the ways in which I am distinctly feminine, or distinctly unfeminine—or, conversely, more than a matter of mere is, the ways in which my supposed unfemininity is constructed as such, is rendered a symptom of my supposedly more-male-than-female neurology. The letter from the imaginary-armchair woman—the letter where she claims that I lack understanding of experiences outside my own, of minds outside my own. Or the first time I went to a school dance, where I went up to the DJ and requested the Electric Light Orchestra, to which he replied that he didn’t have any Electric Light Orchestra; so then I began requesting bands who sounded like the Electric Light Orchestra, such as Kansas or the Moody Blues, or Jefferson Starship or Styx—and I kept reciting band after band after band until he yelled at me, over the sounds of 90s grunge, to get the hell out of his face. Or, at this dance, when I grew stiff to the touch, to any touch, and while my female classmates discussed boys and shampoo tips and kitten posters, I wanted to talk about how many top-40 songs ELO had in a four-year period, or recite the list of all of their songs in alphabetical order, or rehearse the band members’ birthdates.

But, as alien as I may seem to describe myself, as rhetorically unaware as my sixth-grade self may seem—I’d posit that the disempathy here, this rhetorical construction of the autist as disempath, is ableist. That is, any assumption about lack of audience awareness by default makes an ableist assumption about who an audience comprises—an audience filled with non-autistic people, or parents, or professionals, or statisticians? Are autistic people considered to lack such capacity that they cannot form and function as their own audience?

Perhaps my delving into rhetoric, writing, and the troubling of audience seems a stark shift in tone here. But as a writer and an autistic and a woman, it doesn’t seem this way to me. The transition seems so natural, not stark, and I’m not even sure that I need a transition, that I need to create some turn-around phrase or some three-point thesis statement that outlines the whole of what I’m saying, what I’m writing. And for this, a compositionist who likes all things neon and 80s might pull out her copy of Linda Flower and start droning on about reader-based prose and cognitive immaturity, what Ann Jurecic referred to as egocentricity in her 2007 article in College English, called “Neurodiversity.” Jurecic’s piece is what I’d label the trademark autism piece in the field of rhetoric and composition, at least, it’s certainly the most well-known, is one of the first if not the first, and it’s so normatively organized, with lots of transitions and other so-called readerly cues. As Ann Jurecic labels autistic writer and scientist Temple Grandin as mindblind, I can’t help but wonder about my own signposting or lack thereof in the essay I read now, how things make so much sense to me but may very well make no sense to you, as if my words here float and crumble, a style begging for an analogy to my strained ways of making and maintaining eye contact. I think to Jurecic’s comparison of Grandin’s edited and published book versus Grandin’s unpublished essays on her web site—a comparison Jurecic uses to argue that Grandin very much lacks audience awareness, that any semblance of organization is likely attributable to heavy editing on someone else’s part. Jurecic writes, “Grandin, of course, is not a college writer; she is a professor whose job requires her to write frequently and well. Her writing is ‘autistic’ in large part because, even after she has written six books and dozens of articles, she still cannot consistently define a line of argument, guide a reader from one point to the next, or supply background for references that will otherwise be unclear” (429).

I should here note that I haven’t hired anyone to do heavy editing on this essay—as much as I may have needed it. I haven’t run this essay by an advisor or committee member. I haven’t visited the writing center, nor have I discussed potential revision strategies with a disability services counselor. I’ve only shared it with the mirror, reading off words in my own eye contact-less, male-but-not-really-male-brained way.

What strikes me about Jurecic is her reliance on Baron-Cohen, who has also researched and written quite prolifically about autism and mindblindness—that is, the supposed inability to imagine the mental states of others. Despite autism’s postulated male, logical influence, she describes the essaying of autistic writers as having an “unfamiliar logic that is challenging to follow” (43). She also notes of autistic writers that, “Clearly, an inability or limited ability to theorize other minds, as with egocentrism or limited empathy, would make communication a challenge” (426). And here I stop and revisit an earlier point, perhaps in my own desperate attempt to mimic good essay conventions, perhaps in my own frenzied manner of transitioning from point A to point Q. Such a stance, that of grounding autistic ways of knowing and expressing in terms of unfamiliarity, inability, challenges, mindblindness, disempathy, limitations, and other items mired in deficit—such a stance leads me to think that some of these autism PSAs need to be revised, to inform parents that autism steals a person’s ability, as I here unfairly quote Jurecic, to “define a line of argument, guide a reader from one point to the next, or supply background for references that will otherwise be unclear” (430). It scares me that scholars and peers in my field have taken a Baron-Cohen turn. It scares me that my peers and professors and students might perceive my ways of knowing, being, and expressing as misfiring neurons, as disempathetic illogicalities. Such deficit-laden rhetoric makes little to no room for theories of neurological difference, makes no room for disability studies, where societal barriers are more disabling than any form of bodily difference.

As Susan Wendell writes, “We need a feminist theory of disability…Disability is not a biological given; like gender, it is socially constructed from a biological reality. Our culture idealizes the body and demands that we control it” (260). I need only think to Tony Atwood to see the relevance of Wendell and other disability theorists—not to mention feminist theorists—to grasp how unquestioned matters of biology go in matters of disability because, as Simi Linton notes, disability is so often conceived of as that “atypical experience of deficit and loss” (5). Attwood, arguably the most well-known Asperger’s specialist in the world, has recently taken to writing about the under-diagnosis of autism in girls and women. He describes such girls as being able to “pass” more fluidly in day-to-day life because they possess certain positive, womanly qualities—unlike the stereotyped representations of the screaming, aggressive autistic boy, autistic girls are more likely to be quiet and “passive” (3). Attwood also contends that neurologically typical girls are more likely to be “maternal” and take autistic girls under their wings and help with social skills (5).

What I find most pertinent about Attwood to this discussion, however, is his embrace of Baron-Cohen’s concept of the extreme male brain. While discussing how autistic individuals have obsessions, or what he terms “special interests,” Attwood maintains that most autistic girls have “typical” girl interests such as kittens or unicorns—but the unrelenting intensity and rigidity of their interests (that is, the detached and weirdly logical male expression of their interests) is what sets them apart (5). A “typical” girl submits her dolls to mock social situations such as dating or going to the mall. An autistic girl lines her dolls up in alphabetical order, or by height or type, and sits in her room for seven hours while observing the flaws and curves of Barbie’s plastic figure.

Where to go with all this—this assumption that autistic people are inherently lacking something, this assumption that autistic women are somehow less than women because of their neurological wiring, this assumption that autistic writers lack audience awareness, when, in reality, autistic people are excluded from most every audience one could even think of, so what practice would we have anyway in imagining the mental states of others when everyone else so wrongly presumes to know our own mental states?

I think to autistic writer Jane Meyerding, who identifies her autistic self as genderless. She writes, “My intellect makes me a feminist. But my gut, my feelings, my self-awareness remain stubbornly and radically un-gendered—at least in the terms of the culture that surrounds me” (157). And: “When people perceive me as aloof, they are sensing an absence of emotional availability. It’s unwomanly of me, in traditional terms, to be the way I am. In feminist terms, it’s un-sisterly. I just have to accept that, for this autistic, it’s normal” (169).

I’d like to think that feminist approaches to disability—that is, any approach that considers social and cultural constructions of difference, rather than neurological imperatives—would not render the autistic woman as un-sisterly or unwomanly. I’d like to think that I could call myself autistic and not be considered unempathetic or mindblind, as lacking in some core feminine trait (as if there exists a checklist of core feminine traits). I’d like not to get letters from mothers of autistic children that patronize me and my approach to the world, and I’d like not to think of such mothers as occupying red velvet armchairs, because the kitschy image of red velvet alone makes me want to gag. I’d like to think that autism organizations at my university and in my city wouldn’t present autistic individuals as lacking humanity, as having a condition that has taken something intrinsic away. I’d like to think that, as my title suggests, autistic women and autistic writers not only exist in space and time, but also exist in categories that are not centered around deficit, loss, and mystery.

Library-ing on New Year’s Eve

Posted on December 31st, 2009 in blog rants by Aspie Rhetor

I have to admit something that is perhaps a rather shameful thing for a self-professed bibliophile to admit: I don’t like libraries. Or, perhaps I should phrase that as I dislike going to the library. It’s been a lifelong process — getting me to go to libraries (and stay in them longer than five minutes). Though certainly not to the same extent as, say, frat parties, libraries involve wrangling with a bunch of social norms. And I’ve never been one for social wrangling.

Perhaps the one thing I like most about Ohio State is that I’ve rarely had to physically stay in a library while here. I’ve been able to search for and reserve books online. I simply dart into the science and engineering library, grab the book I’ve digitally reserved, and dart out. Very little interpersonal interaction involved.

Libraries, at least at the educational institutions I’ve attended, have always involved lots of people and lots of distractions. And though reading rooms tend to be quieter than cafes or street corners, the silences are overwhelmed with noise — pages turning, clocks ticking, coughs languishing, air circulating — and the visual stillness is overwhelmed with eyes and other unreadable body parts.

Nonverbals abound in libraries. Nonverbals and I don’t always get along.

Upon learning that 1) the library was open today and 2) hardly anyone was there, I ventured out. I managed to stay for nearly three hours, probably a record of some sort for me. I went there to work on my dissertation prospectus, which is ending up a multimedia project. Instead of sifting through book-like things, I had aimed to record photos, video, and ambient noises. Eventually, I located a suitably lonely table, turned around, and found myself parked in front of several rows of the Journal of Mental Deficiency Research. (Which was right near Autism, the journal.)

I defaced some scholarly journals with post-it notes.

Journal of Mental Deficiency Research, with a post-it that says 'pathology (to the max)'

Journal of Mental Deficiency Research, with a post-it that says 'pathology (to the max)'

In one of the 'enlightening' (gag) Autism articles, an author mused about an autistic child's 'entry into the domain of symbols' (aka non-echolalic speech). I went notecard-happy on several cognitive studies/psychology periodicals. DX that, symbol arbiters.

In one of the "enlightening" Autism articles from 2003, an author mused about an autistic child's "entry into the domain of symbols" (a.k.a. so-called normal speech, you know, the only kind of symbolic thing that's worthy of anyone's attention). I went notecard-happy on several cognitive studies/psychology periodicals, including the Journal of Traumatic Stress. DX that, symbol arbiters.

This collection was in dire need of some pathologically ineffectual charity. And I had no shortage of bandaids.

This collection was in dire need of some pathologically ineffectual charity. And I had no shortage of pity-laden bandaids.

Recycling that tired idea of there being one "true language." Because goodness knows that what autistic kids/adults have isn't language, isn't even symbolic.

Recycling that tired idea of there being one "true language." Because goodness knows that what autistic people use isn't language, isn't even symbolic.

Try harder: Advice for researchers everywhere, myself included.

Try harder: Advice for researchers everywhere, myself included.

On “aspie” as a term

Posted on November 7th, 2009 in blog rants by Aspie Rhetor

A couple of the listervs I subscribe to have been debating the term “aspie,” and most contributors have described aspie/autie as cutesy, shiny awfulness. The discussion has provided me with some interesting reading material, if only because I’ve named my blog aspie rhetor of all things. But really, when I hear aspie, I hear ass pee. So, just based on that auditory mangling, it’s not my favorite term. And I do appreciate Sarah’s recent discussion of the term at Cat in a Dog’s World.

Yet, I’ve used aspie here anyway. I’ll explain why.

I prefer to be called autistic, for a variety of reasons. I don’t see Asperger’s as “separate” from autism, nor do I see Asperger’s as being the next and better form of human evolution (ugh), nor do I think that people with Asperger’s DXes are superior/more intelligent/cooler than those with other autism labels (more ugh). As I’ve written previously, these diagnostic labels are, in a large way, socially constructed entities that reflect more on what we deem as normative than what we deem as autistic. How we conceive of functioning labels, for instance, is a product of social and cultural power, where “functioning” really means “the ability to act and think like all us normal and therefore superior people.” In a large way, distinguishing oneself as aspie can institute this sort of cultural power — a way to call attention to one’s position on the functioning food chain.

But I still use aspie here, despite the potential for misinterpretation, despite the potential for others to assume that I’m some sort of shiny, self-important autistic. And here’s why: I’ve been given a label in the name of pathology, and I want to reclaim that label in the name of disability studies/neurodiversity/autistic culture.

When I use aspie — and I daresay when certain other autistic people use aspie or autie — it’s not an act meant to exclude others, nor is it an act meant to create hierarchy among autistic individuals. In fact, I use aspie and autie almost interchangeably — because I personally don’t  see a difference between the two, at least not in a let’s-take-back-the-language-used-to-describe-us-and-oppress-us sense. Sort of what Simi Linton writes about.

To give further background: someone called me an aspie rhetor before I called myself an aspie rhetor. And I take issue with both words: First, the person who called me an aspie wasn’t someone who knew (or cared) much about autistic culture. And second, I take issue with being called only a rhetor — I’m also a rhetorician, dagnabbit.

The difference? Rhetors are people who make arguments or create messages (e.g., bloggers). Rhetoricians are people who study what rhetors do (e.g., study bloggers and their blogs and the people who read their blogs). Apparently, per this person, by sheer fact that I’m a so-called “aspie” — and am therefore disordered — I don’t have the ability to study the moves that other aspie rhetors make.

In fact, per this person, all of the autistic bloggers on the Autism Hub are aspie rhetors (even if they’re not, um, aspies): by sheer fact that they’re autistic, they’re incapable of being rhetoricians.

So, insert the mindblindness and Theory of Mind mantras here. I can’t escape my poor little mind prison, so I’ll always be the studied rather than the studier. Because goodness knows that autistic people are arhetorical beings who lack such audience awareness that they don’t have the capability of understanding what rhetoric is.

So, let me make something clear: I’m an autistic rhetorician, not an aspie rhetor. And Hub bloggers are rhetoricians, not just rhetors. But with what I like to think of as a final blow to this individual, I’ve called myself (or my blog) aspie rhetor. And why not? I’m an English major. I can spend the next 10 years analyzing all the crap associated with that term. And if ableist individuals are going to demand that I’m aspie (as opposed to the so-called “horribly damaged” autistic people) and that I’m a rhetor (as opposed to those people who actually know what they’re doing when they write), then I might as well make these terms my own, complicate what these terms mean, use them in ways they weren’t intended.

Moreover, because I like to think of myself as both a rhetor and a rhetorician, I’d like to think that I have some insight into making my own blogging space a rhetorically effective and accessible blogging space. For instance, aspie rhetor is not only easier to spell (e.g., aspierhetor.com), but it’s also easier (for me) to pronounce than autistic rhetorician.

Maybe someday — perhaps when the DSM-V arrives and does away with the Asperger’s stuff — I’ll remake my blog, or have two URLs leading to the same place: aspie rhetor and autistic rhetorician. But I don’t feel apologetic about referring to this space with the word aspie. I recognize that in many contexts, it certainly does create a dichotomy amongst autistic people, just like functioning labels do. But a rather large part of aspie and autie involves taking back the words that others come to know us by. And in that sense, I don’t see the dichotomy, and I don’t see the hierarchy.

Maybe I should put this stuff on my About page.

Really? I never would have guessed that you’re neurotypical.

Posted on July 1st, 2009 in blog rants by Aspie Rhetor

For starters, you don’t look neurotypical. I should know, after all, what neurotypicals look like. I saw one on TV once. And my cousin’s dog-walker’s kid sister is extremely neurotypical — she cracks her gum and wants to be like Paris Hilton when she grows up. Her poor mother.

You’re too well-adjusted to be a neurotypical. You alphabetize the contents of your closet. Neurotypicals can’t even find the will to put their laundered underwear in their dresser drawers. They’re that cognitively damaged.

You sound nothing like a neurotypical. You’re succinct and honest, and not once have I ever heard you gossip. And, sure, you like to watch the occasional chick flick, but that’s a human thing, not a disability thing. If you were really, truly neurotypical, you’d blubber incessantly and inconsolably over trivial things like 10 Things I Hate about You or the entirety of the E! Channel.

You can’t read anyone’s mind. And everyone knows that neurotypicals are so afflicted that they can tune into others’ thoughts. They’ve got these savant-like cognitive powers that border ESP sometimes, yet they can’t even round off Pi to four digits. Fascinating, but so tragic.

I know you have three official diagnoses and all, but I think you need a fourth opinion here. I mean… you… neurotypical? Seriously? I read a WebMD article on neurotypicality once. These people are socially deluded. Your team of “board-certified” and “world-renowned” neurologists probably have some ins with big pharma or something.

I saw this television documentary on the neurotypical “spectrum” last week. All these poor little kids, suffering horribly. The fact that you don’t want to drive a metal stake through your skull in order to end your horrific existence means there’s absolutely no way that you’re neurotypical. Goodness knows that real neurotypicals want to be cured.

I saw you wearing an IEEE t-shirt once. Neurotypicals aren’t even sentient enough to pronounce “engineer,” never mind understand what an engineer does.

Do you really want this label? Labels have stigma. They create their own realities, and you might get trapped in the process. Do you really want to become an addled hairdresser, or worse, a politician? I mean, sure, some neurotypicals have found monetary “success” — e.g., Fran Drescher, Adam Sandler, or Dick Cheney — but they’re the exception, not the norm. Most neurotypicals end up in trailer parks, saddled with 40K in student loans, 30K in credit card debt, a closet full of “nothing to wear,” two ex-husbands, and 2.5 children to boot. I’m really afraid that this label will set you on the path to destruction.

You’re a guy.

Don’t you know that all neurotypicals speak? In fact, they don’t shut up. You and your PDA-mobile-text-machine thing just don’t fit the NT mold.

If you were really a neurotypical, you would have been diagnosed as a toddler. Such a severe cognitive handicap would be obvious, not something that would be misdiagnosed or overlooked. It doesn’t matter that neurotypicality wasn’t included in the DSM until four hours ago — people would have known. NT children are the pretty-in-pink brats running around with fake telephones, the kids who pester their poor autistic siblings to play “dress up” and “let’s go to the mall.” They bring the whole family down with them. The disease is just that bad.

Neurotypicals crave romance and affection. They have constant desires to be held, to be told how wonderful they are. You’ve only had one partner, maybe two. Really, you’re just not that “severe” when it comes to attention-seeking and sexuality.

Did you know that one NT child costs the average school district about $25,000 annually? Imagine all the non-NT kids we could be helping with that money. So, how dare you claim to be NT! I think you just want to mooch off the system. You and your excuses.

But, honestly, you can’t be NT because I, as an autistic person, say so. The sheer fact that you would risk putting yourself in a (dis)abled position endows me with the power to name and claim (dis)ability — or lack thereof — for you. Don’t you realize that (dis)abled people cannot name themselves, cannot label themselves, cannot enculturate themselves, cannot take pride in themselves? Don’t you realize that those who are deemed normative will always know more than those who are deemed non-normative?

Don’t you realize that everyone else will always know more about you than you?

Program of study

Posted on May 13th, 2009 in blog rants by Aspie Rhetor

I’m a Ph.D. student in English. I finished coursework in March, and I’m now prepping for my candidacy exams, which I hope to take the last week of September. My department requires a program of study from PhD students — a longish document in which we propose our field and focus areas for our exams, as well as our reading list. The POS also includes a description of the dissertation, plus some other description-like stuff (e.g., previous graduate work, teaching and professional experience, conference presentations, publications, projects, and the like).

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.

Dx *this*

Posted on March 25th, 2009 in blog rants by Aspie Rhetor

This is something I’ve touched on in this blog, however briefly: the wonderful (or not so wonderful) world of autism and so-called official diagnoses.

Among other not-so-pleasant things, autism is frequently depicted as the newest “trend diagnosis,” especially within online circles. We only need look to Dennis Leary’s or Michael Savage’s tirades this past summer to get an idea of the over-the-top vitriol surrounding this assessment. Moreover, such comments about overdiagnosis appear despite autism specialists proclaiming that autism is underdiagnosed.

Autistic writers such as Thomas McKean have argued that there is an “ethos” problem within the autistic community, that adult-diagnosed or self-diagnosed individuals have little to no place in the discussions that surround autism and autistics. The folks at autistics.org penned an excellent follow-up to McKean’s assertions. Of course, in addition to the overdiagnosis brouhaha, we have the high-functioning/low-functioning division, that clever binary employed as a mechanism to diminish the ethos of those autistics who do self-advocate.

I want to explore this diagnosis issue more, however, because I think it’s an issue that really needs to be addressed. Many so-called debates in autism discourse seem to prevent autistics from self-advocating, from entering into anything resembling an autistic culture — anything to further someone else’s agenda.

My own experiences with “diagnosis” and “assessment” are mixed. I first learned that I “likely” had Asperger’s when I was a teenager, around the time I dropped out of high school. Of course, the individuals providing such an assessment were not autism specialists, nor could they document my condition “officially.” Something similar happened in college — I sought out counseling at a couple junctures, and was again told that I had Asperger’s… unofficially. In fact, I didn’t become an “official” autistic (ugh) until I began working on my MA degree. What to make of this?

I should note that my age(s) of “diagnosis,” while somewhat older, are not that uncommon (especially for women), and thus I think I’m generally afforded a fairly strong ethos when I participate in autistic communities. But, nonetheless, some people only latch onto the official designation, which occurred when I was of college age. (For example, one autistic person I know in real life, when he learned of my age at official diagnosis, commented that I must be “extremely mild.” I resisted the urge to punch him in the face.)

Contrary to the beliefs of the interwebz, I didn’t wake up one day and decide to be autistic. I was passively labeled as autistic before I ever agentively labeled myself as autistic. I suppose I could have (or my parents could have) more vigorously pursued officialness when I was a child. But, for personal reasons, we didn’t go that route — at least not at that point in my life. However, there was something clearly different about me from birth. (Yes. That early.) Nobody recognized that something as Asperger’s until I was much older — partly because Asperger’s itself wasn’t even an official diagnosis until I was a fifth grader, partly because Asperger’s wasn’t widely and publicly recognized and diagnosed until I was nearly college-aged, and partly because I’m of the female sort, and ASD has largely been seen as a “boy thing.”

This is all very personal, personal in a way I don’t quite feel comfortable writing about. However, I write this because I’d like to think that, eventually, both the autistic community and the autism community could move away from this obsession with age and diagnosis, as if somehow a 40-year-old diagnosee is either more “helpless” because she “lacked early intervention” or is less autistic because “nobody noticed it sooner.” Do we really, truly believe this nonsense?

Obviously, diagnosis can and does serve a purpose. It allows, legally, for access and accommodation. For many, diagnosis is validating and/or leads to self-understanding. Diagnosis can explain a lot. But there are some things that diagnosis just plain isn’t and just plain shouldn’t be. (For example, why must someone possess a legally binding document, a document that probably required oodles of out-of-pocket money, in order to receive an accommodation? In the words of my interwebz friends, WTF?)

I think we, as a community of autistics, need to recognize the structures embedded in diagnosis first and foremost: whether you’re examined by fourteen neurologists at age three or one clinical psychologist at age fifty-three, you can still call yourself an autistic and self-advocate with that ethos. Accordingly, even if you don’t have an official diagnosis, you should still be able to contribute to the larger autistic community, to be a part of this community.

Why are autistics making social pariahs out of other autistics? Are we not already pariahed enough on a daily basis? Autistics are individuals. Autistics are diverse. Autistics come from different places. Get over your own shiny brand of autism and get used to it.

My own reaction upon first learning about my ASD was that of fear and shame, mainly because fear and shame were the emotions I’d been programmed into feeling about ASD. I’d never come across anything remotely positive in association with autism (and these were the days before I’d become truly acquainted with the internet). I welcomed unofficialness because I didn’t desire stigma, because I didn’t comprehend the fullness and richness of ASD, because I didn’t come to ASD from a lens of difference or diversity — I only understood ASD as depressingly embedded in deficit. It took a long while for me to reshape my views of ASD and myself. Although self-diagnosis generally refers to those individuals who voraciously read and learn everything they can about ASD and then recognize themselves in the label, I tend to see self-diagnosis more along the lines of self-recognition or self-identification.

I suppose this post is the result of a pent-up reaction to snarky comments I’ve seen in autistic web forums and listservs, snarky comments made about others. But I’ve also been triggered into annoyance mode by in-person questions. Lately, I’ve been greeted with the when were you diagnosed? question more often than usual, it seems.

I don’t really know how to answer that question. In a lot of ways, it seems invasive: why the hell does it matter? It’s not as if the autism latched to my brain one day in grade 9, and, as a result, I’m not as malignantly autistic as the kid diagnosed at age two. In a lot of ways, I feel as if this question is wrapped in a medical model, or a disease model, of autism and disability. To me, it suggests the idea of a severity continuum, as if teens and adults shouldn’t be diagnosed with autism by the sheer fact that they’re adults, as if only the little helpless children matter, as if only kids are “severe” and in need of “services.”

Moreover, anyone who claims to be autistic and not suffering has to be a joke, right? Why not find every means possible to discredit them — age of diagnosis, self-diagnosis, adulthood, gender, sexuality (gasp! autistic and sexual in the same sentence?), IQ, so-called “functioning” level, speaking style, writing style, stim style, income bracket, and on and on… </sarcasm>

Amanda Baggs has felt the need to post her official documentation online, which, I’m guessing, is due to some of the horrible, doubting comments she’s received on her blog. (One of the sessions I attended at CCCC, on autism and rhetoric, commented on this. The presentation was made by April Mann.)  It’s as if people believe that personhood entirely precludes autism — forget the age or officialness debates. How long do autistics need to keep defending themselves? How long until our ethos is a legitimate one? Highly rhetorical questions, I know.

But back to that dreaded question: when were you diagnosed? I struggle with how to answer this concisely. I struggle with whether I should answer it. I struggle with writing this blog post. I feel as though I need to regurgitate the official diagnosis as my answer, even though I knew several years beforehand. But then there’s also the age at which I self-identified, the age at which I embraced my autism, which is a different matter entirely to most who ask the question — but to me, that moment is the important one, more important than the moments that involved paperwork and stacking cubes.

I suppose, as an autistic writer, concision has never really been my strong point? ;-)

New webtext

Posted on March 1st, 2009 in blog rants by Aspie Rhetor

Last year, I took a seminar in disability studies with Brenda Brueggemann and created a webtext for my final project — a webtext on autism and embodied authorship. This past summer, while attending the Digital Media and Composition Institute (DMAC), I did a complete overhaul on my webtext and received lots of good advice from Cindy Selfe and Cheryl Ball. This webtext has been published in the Spring 2009 issue of Computers and Composition Online, an online, refereed scholarly journal. I’m quite excited, but also quite nervous. In a way, this functions as an Asperger’s sort of “coming out.”

For those interested, my webtext is available here:
http://www.bgsu.edu/cconline/dmac/index.html

I should also note that there are several places in this webtext where I attempt to be sardonic, or sarcastic even. Part of this is me playing with representations of the spectrum. My own perspective about autism is a very neurodiverse one, so if something in this webtext seems contrary to neurodiversity, or seems inflammatory, then it’s probably me attempting to be sarcastic. I’m hoping the points where I’m not being literal are clear in their intent, especially since so many people reviewed this and helped me with the revisions.  :)