CFP: Disability and Rhetoric

John Duffy and I are co-editing a special issue of Disability Studies Quarterly on disability and rhetoric. I’ve pasted the call for papers below, as many of those reading have research interests in disability and its intersections with rhetoric, language, literacy, and/or media.

DSQ is an interdisciplinary journal, and we’re looking for (m)any disciplinary perspectives on the issue’s theme. So, please consider submitting, and please distribute this call widely! And, of course, if questions arise, feel free to contact us (see below).

Call for Papers for a Special Issue of the Disability Studies Quarterly: Disability and Rhetoric

The profound insight of Disability Studies is its conception of disability as a representational system rather than as a medical problem, a deficit, or a personal tragedy (Thomson, 1997). In this view, disability is regarded not as a settled physical or cognitive fact but rather as a discourse, a collection of figures and narratives, tropes and topoi, speakers and audiences that suggest identities and positions in the world to those participating in the discourse. The analysis of disability, then, necessarily goes beyond medical and psychological perspectives to consider how words and other symbols may be used, recalling Kenneth Burke (1969), by human agents, “to form attitudes or to induce actions in other human agents” (41). Disability, to say it another way, is inherently rhetorical and may best be understood through methods of rhetorical inquiry and analysis.

To that end, a special issue of the Disability Studies Quarterly (DSQ) will address the topic of rhetoric and disability. While Disability Studies has revealed the essentially discursive nature of disability, rhetorical theory and analysis promise to further the discussion by contributing a unique set of methods, terms, and concepts. Rhetorical method is a particularly important concern, and we are especially interested in essays that illustrate diverse methods and modes of rhetorical analysis as these relate to disability. Essays may analyze the workings of rhetoric in printed works about disability but also in other media, including film, music, web-texts, graphic novels, and other forms of sound and image.

We define “disability” broadly to include physical, cognitive, and intellectual difference. The ideal essays will enrich understandings of the relationship of rhetoric and disability, but will also serve as models for future scholarship in studies of symbolic representations of disability. Potential issues or topics may include, but are not limited to, the following:

  • Disability as, in, or and rhetoric
  • Disability and or as trope
  • Disability rhetorics in the media
  • Disability rhetorics in the classroom, workplace, or home
  • Disability rhetorics and narrative
  • Disability and digital rhetorics
  • Activism and rhetoric
  • Disability and audience
  • Disability and rhetorical appeals, the rhetorical canons, and/or the rhetorical triangle
  • Disability and legal/governmental rhetorics
  • Rhetorics of accessibility
  • Rhetorical constructions of disabled identity

Timeline
Queries or abstracts sent by February 1, 2010
Full submissions due July 1, 2010
Final revisions due November 31, 2010
Publication in the Winter 2011 issue of DSQ.

Submission guidelines

  • Manuscripts must be in the form of a Word document and:
  • Have a cover page that includes the author’s name, institutional affiliation, and contact information
  • Have an abstract of 100-150 words
  • Be between 3,000-6,000 words in length (approximately 10-20 double-spaced pages)
  • Provide full references for all citations
  • Include a brief biography of the author (50-100 words)
  • Follow DSQ guidelines: http://www.dsq-sds.org/about/submissions#authorGuidelines

Please send queries and submissions to John Duffy (jduffy@nd.edu) and Melanie Yergeau (yergeau.1@osu.edu).

References
Burke, K. (1969). A rhetoric of motives. Berkeley: University of California Press.

Thomson, R. G. (1997). Disability, identity, and representation: An introduction. In R.G. Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press, 5-18.

On “aspie” as a term

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.

Protesting Autism Speaks

A delayed post on my end, but I have my candidacy exams as an excuse. (I’ve completed the written portion, and I move onto the oral this Thursday, yikes.)

On October 11, I helped to lead an ASAN protest against the Autism Speaks walk at Ohio State’s campus. As I now have the benefit of being three weeks removed from the protest — as well as reading/hearing/seeing reports of other ASAN-led protests across the country — I feel a sense of accomplishment. I’d certainly never organized a protest before — and I’d only attended my first protest this past June, which was a disability rights protest against Ohio’s proposal to cut funding for community supports (and Ohio’s proposal to increase funding for nursing homes, ack). In June, I took notes about chanting and marching, and the chorus of Our homes, not nursing homes! is still present in my brain. (We were loud. And we were quickly hoarse.)

I suppose, on some level, I feel perpetually frustrated here at Ohio State. Our protest didn’t receive media coverage, which was a disappointment — though, to be honest, I’m not the sort of person who likes to be noticed, per se. (I’m not media material. I’m quiet-and-behind-the-scenes material.) But I also suppose the good news is that, really, Columbus’s Walk Now for Autism hardly received any media coverage itself. There was a quick spot on NBC4 (which was to be expected, given that one of their anchors has an autistic son and the station itself co-sponsored the walk), as well as a photo slideshow on The Dispatch website (the Columbus newspaper). Though my search for pro-Autism Speaks media coverage wasn’t entirely exhaustive, I doubt there was any other coverage (at least any other coverage of note). I taped all the news shows that evening, and no one else mentioned the walk. NBC4 seemed to monopolize it.

But back to the frustration: On campus, Autism Speaks seems to be everywhere. And it’s partly a matter of manpower and resources — they’ve got more than we do. By far. And our university president keeps uncritically singing their praises (to the point where we’ve drafted a petition and plan on standing on a street corner and asking passersby for signatures). I tire of seeing their flyers daily — flyers that variously portray autism as an epidemic, a puzzle, a burden on taxpayers, a fate worse than a combination of fatal situations. And I grow even angrier when I see flyers that read Got questions about autism? We’ve got answers!

Dear god. My colleagues, students, and professors might go to these people for answers?

I also love (not) how some of their past campus fundraisers have included things like Mary Kay parties, sorority cookouts at midnight, or shop-a-thons. Their events sound so autistic-unfriendly that, if it weren’t so egregious, I’d find it utterly hilarious.

I’ll end this post with photos. Several of these photos have circulated the blogosphere by now, so I’ll try and post those that weren’t featured (that I know of) in other blogs. The protest was very successful: nineteen people braved the throngs of “puzzled” walkers. We endured angry honks, middle fingers, haughty walking mothers, and entitled white men yelling, “You’re a bunch of f—ing idiots!” But we also had productive conversations with parents, and we were even thanked by autistic people who had been dragged to the walk.

This is me holding a sign reading "Autism Speaks does not speak for me"
This is me holding a sign reading “Autism Speaks does not speak for me”
Tim Jensen holds an orange sign that reads "Nothing about us without us"; Chris Lindemann holds flyers; Kate Comer holds a sign that reads "Diverse NOT Diseased"; and Jonathan Buehl holds a yellow sign that reads "Nothing about us without us"
Tim Jensen holds an orange sign that reads “Nothing about us without us”; Chris Lindemann holds flyers; Kate Comer holds a sign that reads “Diverse NOT Diseased”; and Jonathan Buehl holds a yellow sign that reads “Nothing about us without us”
Jonathan Buehl; Brenda Brueggemann with a sign that reads “Disability Rights”; me with a sign that reads “I can speak 4 myself”; Jason Smith with a sign that reads “First class autistic, second class citizen”; Justin Rooney with a sign that reads “Nothing about us without us”
Jeffrey Strasser, " 'Autism Speaks' against us"; Stephanie Ballam, "First class autistic, second class citizen"
Jeffrey Strasser, “*Autism Speaks* against us”; Stephanie Ballam, “First class autistic, second class citizen”

I hate noise

…says someone in the midst of studying for her candidacy exams.

Everything is really loud. The wind clanging the blinds together. The guy upstairs walking to what I presume is his refrigerator, given the sound patterns. Me typing. Me talking — even when people tell me to speak up. (I’m always loud. Don’t they get it? Loud, loud, loud.) Cars — need I say more about cars? The hallways at school, filled with feet and hands and mouths and papers and hair and eyelids and trashcans and mop buckets and plastic wheels and cellphones and clocks (some living, some dead) and doors and windows and air units and keyboards and beeps and teeth and light switches and flickering fluorescents and benches and…

I am home today, writing. And reading. I’m just wrapping up a five-week writing course, a course that I taught and enjoyed and feel exhausted over. The quarter system is fast-paced. The half-quarter system is even more fast-paced.

Scissors make noise. As does cardstock. But cutting out rainbow infinity signs is a welcome break from grading, a more welcoming sort of noise:

Rainbow infinity sign cut-outs on a black chair

Crickets.

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

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?

ASAN-Central Ohio/Ohio State

I’m slowly starting to get this whole “chapter director” thing into my routine, with hopes that I will pick up where I left off with blogging regularly. The ASAN-Central Ohio group is going well, very well. We rotate between meeting face-to-face and online: our aim is to be as inclusive as possible. Many in our group (including me) tend to get overwhelmed by too much contact and socialization, or just find text to be more preferable for communication.

Right now, our group has two big plans. The first is event-planning for Autistic Pride Day, which falls on June 18. The whole of April is dedicated to autism awareness, but the awareness preached in April tends to be of the medical sort, the sort that hyperfocuses on cure and prevention and alarmism. Our plans for the event have not been solidified yet, but we’re aiming for something that celebrates autistic culture. We’d been tossing the idea of holding an autie picnic in some prominent locale (e.g., the capitol lawn) and printing up a bunch of pamphlets that describe autism positively for passersby. We also have artists, writers, and possibly musicians in our group, and we’ve thought about asking those individuals to showcase their work, if they feel comfortable. We’ve decided to combine this picnic idea with another: we’re hoping to meet with a few state reps on the morning of June 17 and talk to them about ASAN, neurodiversity, and Autistic Pride. After that, then we’ll segue into the picnic and fun stuff.

The second item we’re planning is going to require a good deal of elbow grease: we want to visibly protest the Autism Speaks walk in Columbus on October 11. For a number of reasons, Autism Speaks doesn’t coalesce with neurodiversity activism. First of all, none of the Autism Speaks leadership positions are occupied by autistic people. Moreover, Autism Speaks frequently employs alarmist rhetorics in their depiction of the spectrum, e.g., comparing autism to lightning-strike stats, pediatric cancer, and AIDS. According to their organization, inviduals on the spectrum are inherently suffering and pitiable people who present an excessive burden to families and society. Autism Speaks’ main goal involves cure and prevention, and instead of directing their funding to support autistic individuals in their everyday lives, the group focuses on eradicating autism (or eradicating autistic people).

Our goal is for this protest to be peaceful: we hope to gather a large number of people and stand on the sidelines with large posters and signs. We also plan to write letters to the local Autism Speaks chapters, as well as their sponsors, before the event takes place. In our latest ASAN meeting, we discussed the difference between being “strong” and “militant” in our goals — strong having the better connotation. Given the events happening on the Ohio State campus recently, many of us are incredibly frustrated with Autism Speaks. Those of us who have written to them have been ignored or brushed off, and any disagreement we have with their methods or end goals is chalked up to us being so-called black-and-white or unempathetic or literal-minded disabled people who don’t know how bad we (or they, the poor families) have it.

A bit hard to read because of the wind, but the banner is hanging from a sorority house. It has a puzzle piece and Autism Speaks written on it, and is hanging for a fundraiser called "flippin fuzzies."

A bit hard to read because of the wind, but the banner
is hanging from a sorority house. It has a puzzle piece
and Autism Speaks written on it, and is hanging for a
fundraiser called “flippin fuzzies.”

How are autistic people supposed to react when we see people wearing t-shirts like this? “Grateful” that people think of us as puzzles, as missing a few cognitive pieces? In what way is that not insulting?

How are we supposed to act when campus Greek life displays banners like the one above, or gives interviews like this one? Or when local grocery stores claim that a pseudo-eugenics organization aligns with their core values? I shudder at the thought that my peers, professors, and students might think of me and other autistic people as diseased, devastating, and lacking in “proper” brain function — everything a matter of deficit, deficit, deficit.

…hence, the protest.

My middle name

The map is new, and I know it all. I hop from one painted state to the next, reciting each capital, each state bird, each state nickname, each state flower, each state population as of 1989, the year imprinted on the spines of my World Book Encyclopedia set. It is 1994 or 1995, and I’m obsessed with maps. I have a Mercator Projection of the U.S. tacked to my bedroom ceiling and a Robinson of the world taped to the wall. Each morning I awake to the series of lines and dots and borders, pull a fuschia sweatshirt over my head before skulking into the predawn world, the world where I deliver six routes worth of the Concord Monitor with my father. I want to know where Franklin St. ends, where Penacook St. begins, where the tangible tar resides on the not-to-scale ceiling map, the round-edged wall map, the neon playground map.

On the first day of fifth grade, the teacher read off my middle name during roll call, and now they all know it. As I wrench myself across South Dakota and Nebraska, I hear taunts of Melanie-Rita-Book and Melanie-Rita-rd and Rita-rd-Died-A-Yer-a-geau.

And I awake the next morning, place Mrs. Toomey’s paper on the mailhooks, run from the chained pitbull at the Pembroke duplex, imagine a story in my head about an island made entirely of sugar, wonder if the series of rivers I’ve mentally sketched will eventually absorb the grass and cause massive island sinkage. And at recess, Jessie pushes me onto Georgia and calls me stupid, and Cindy, my only friend, has stolen a doll from my knapsack, but I pretend I haven’t seen her stuff it up her blouse. Jessie #2 makes fish faces and chants Rita-rd, Rita-rd, so I venture back with the only retort my Rita-Book brain can muster and call her a neutrino, which she unfortunately hears as nutra-nose. I run from the map and the impending fists, terrified, and self-induce an asthma attack.

The Robinson fascinates me. The edges curve, the lined coordinates uneven and gapped. I imagine my paper routes, imagine Jennings Drive and Wyman St., now a collection of lines. Down the hall, my parents play cards with the neighbor, my father recounting the story of how I flawlessly navigated a trip from Florida to New Hampshire at age seven. Earlier that week, he tried to make me grab a flyer from Market Basket and I tantrummed, wanting to know every precise detail from door entry to turns to grab-from-the-shelf protocol. So unfamiliar and unpredictable seemed the grocery store landscape, so intense for me, age 10, and even now in my twenties, to conquer on my own. And he had uttered that familiar, frustrated reply, “How can you be so smart and so stupid?”

I love my fifth grade teacher. I am working on a play about the Great Lakes region, and she lets me stay indoors during recess to work on it. I meet with a guidance counselor weekly, a Virginia-shaped man convinced that I’m at fault for my own bullying, and every time he suggests outside recess, I produce the magical asthma wheeze. Back I go to the teacher’s aide-cum-babysitter, to the longish table stationed outside the library, and I write about Sheila the Robber and her trip from Columbus to Cleveland. I sit at my laptop, some fifteen years later, staring at a Columbus city map, trying to remember the neon and the dots, the second Jessie who died of a brain tumor, the first Jessie who traipsed me into junior high, the dolls lost in the longitude.

Program of study

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.

Continue reading Program of study

Where I’ve been

It’s been a month. A hectic month, to say the least. This evening, at 5:45pm, we’re holding our first official meeting for the Autistic Self-Advocacy Network at Ohio State. Benzion Chinn and I are co-chairing the group. I’m quite excited, though I’m also quite nervous. We have no idea what the turnout will be like. I’m hoping for a moderate number of dedicated people. Too few people would be sad, and too many people would be overwhelming. Alas, we shall see.

[For more details about the meeting, you can read the ASAN-Central Ohio blog.]

I’ve also [finally] finished writing my program of study, a massive document that describes my field and focus areas and contains my reading lists for exams. I just found out that it passed, and I’ll post the document here in the next few days as it’s quite relevant to this blog.

Dx *this*

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? 😉