aspie rhetor

I have not yet received a response from Gordon Gee about the letter I sent to him last month. I have, however, received lots of other responses — responses that run the gamut. I forwarded my letter to the central Ohio chapter of the Autistic Self-Advocacy Network, which then circulated the main listserv, which was then posted on the GRASP listserv, which was then picked up by a couple of other autism-related blogs. And, this being finals week, I haven’t yet had much opportunity to respond to the response.

One accusation that has come my way is that I’m “trying to speak for all autistics.” I’m not; this was never my intent; and I don’t think that my letter reflects this intent. My aim was simply to introduce the president of my university to the (often invisible) debate occurring in autism/autistic discourse. Moreover, I stand by the claim that many/most autistics (LFA and HFA) have issues with being “cured.”

Please note, however, that the neurodiverse position which I’ve adopted does not berate medical treatment or education or access, etc. These things aren’t cures. I even stated such in my letter:

“Although Autism Speaks admirably aims to help families attain necessary medical services, their cure-and-epidemic rhetoric frequently denies autistic individuals a most fundamental right—that of their personhood.”

Moreover, I also advocated the following:

“Only when we acknowledge that the conversation on autism must, of necessity, include autistics can we begin to help all those affected by autism to lead productive and fulfilling lives.”

I fail to see how these points take attention/resources away from those who are low-functioning.

Obviously, as a community, we need to further investigate what we mean by “cure,” what we mean by “treatment,” what we mean by “intervention.” I think we also need to question the assumptions we make about autistics as related to their postulated “functioning” levels. One common comment I’ve received from parents is that their autistic child will never do what I, as an HFA person, am doing. And, to be honest, this outlook saddens me, because 1) it assumes a whole lot about my personal medical and educational histories, and 2) it focuses on the child’s deficits, defining that child wholly in terms of lack. Sure, we might postulate that many autistic children will never attend grad school (or get married, or live alone, or say “I love you”), will never be “successful.” And, right there, I think we need to also question the nature of the word “success,” because it assumes that success can only be accomplished according to traditional able-bodied narratives or through the magic pill of cure. It also delegitimizes non-traditional/autistic successes, I think: what do we, as a community, define as success, value as success?

I hope this makes sense. I completely recognize that I am not other autistics, as much as I recognize that other autistics aren’t me. But isn’t this the whole point? The spectrum is a spectrum because so much is encapsulated under it, and no two people with ASD are alike. Even Autism Speaks can agree with this, I’d say.

I’d also like to reiterate something I wrote in an earlier blog post: as proud as I am to be autistic, Asperger’s isn’t all sunshine and butterflies. For instance, I have some real sensory problems, painful ones. Yet, as much as I want to be able to enjoy certain foods or tolerate normal lighting or sounds, I don’t want to turn off my sensory experiences. This is how I know the world, experience the world, make sense of the world. My sensory experiences are, in part, related to some of my behaviors that others consider “odd” or “off-putting” or “autistic” (e.g., stimming, lack of eye-contact, perseveration). In essence, while learning how to better manage my sensory experiences would be wonderful, eradicating them would be horrible. Removing them would remove me.

Obviously, the cure issue is more complex than I presented it in the above paragraph. But it’s a good start to explaining why cure is so sticky, so tricky, so icky. I think another valid point has to do with resources: autistic children (LFA children especially) and their families are often placed on never-ending waiting lists for the services they need, are denied insurance coverage, are denied equitable educational access, etc. And we have all this supposed money going to cure research, but only a fraction going to the supports needed now.

Rhetorically, cure is a question of kairos, of timeliness and urgency. We are made to feel, by organizations such as Autism Speaks, that cure will make families and children “whole” again, that cure is of the essence. Instead of valuing who these autistic people are and what they need, we value what and who they might have been otherwise. We fantasize, romanticize. And rather than help autistic children and adults learn to be themselves as they learn to navigate this complex, social, NT world, we want to make them over into something other and alien and so totally not them.

I’m sure I’ll add more to this later. But I felt the need to clarify my position in light of recent comments. Hopefully I’ve been “successful” in this venture.

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On November 19, I participated in a panel at NATTAP. Now in my fourth year of graduate study, I’ve presented at several academic conferences. This conference, however, was unlike any I’ve previously attended. I suppose, more than an academic conference, it was a “professional” conference (though that lexical distinction remains somewhat fuzzy in my brain — who says that academic isn’t professional?). I spoke for ten minutes about the women’s Asperger’s group that is hosted/supported by the Nisonger Center at OSU.

This was very uncomfortable for me, as are most conferences, I suppose. This discomfort, however, stemmed from something different — it wasn’t simply a matter of my unease with speaking and socializing. Rather than positioning myself as someone with “expertise” on a subject, I was positioned as the beneficiary of someone else’s expertise. Rather than positioning myself as an academic invested in a particular line of inquiry, I was positioned as the line of inquiry itself. And it was really, really weird.

Jim Sinclair, one of the founders of Autism Network International, coined the term “self-narrating zoo exhibit” to describe the role spectrumites are frequently squeezed into at NT-dominated autism conferences: that of the weirdo, that of the puzzle, that of the walking-autism-answer box. This role resembles not merely that of a freak, but that of a freak who is obligated to answer every question that comes his way, no matter how personal or ridiculous.

In the days prior to the conference, I began to worry that I might be construed as the panel’s aspie specimen, the magic eight-ball of aspiedom. My ten-minute task was to describe the challenges that I encounter as a woman with Asperger’s and how the women’s group has been helpful. In going forward with speaking, I had to continually remind myself why my presence at this venue might be useful, might be important: there are very, very few support programs for adults on the spectrum and even fewer for women on the spectrum. Moreover, as Amanda Baggs describes, some questions are OK questions — I’d rather parents seek answers from spectrumites than from celebrities, DAN!, or Autism Speaks.

Despite the potential positives, I was very queasy about all of this, about how I would be treated and represented, and even my walk across the convention center parking lot heightened my nervousness: never before have I seen so many puzzle bumper stickers so thickly concentrated in one geographical location. So much of this event was a question of audience, an audience against which I felt very, very alien. And as much as I want us/them binaries to be broken down — NT/autistic, aspie/autie, PWD/TAB — I felt like a neon them for a day.

Yet, despite my feelings of foreignness (which, to be honest, I’ve felt since my earliest memories), the panel wasn’t psychologically devastating for me. It was largely positive. I inadvertently did something smart in my presentation: as I was discussing some of my academic/vocational challenges, I mentioned how every time I attend a conference, I get depressed because I can’t socially navigate, and I hate the Q&A sessions at the end of presentations because, inevitably, someone asks me something for which I haven’t scripted a response, and spontaneity freaks me out. My railing against questions, according to a fellow grad student in the audience, kept NTs from asking me questions. If I’m right about this audience-empathy thing (which would be nice — being right is fun), then perhaps NTs need to be led by the hand as much as aspies and auties do when it comes to entering a discourse that is foreign to them: how else are they to know of their faux pas?

(Of course, conversely, by only asking questions of the “experts” on the panel — social workers and a psychologist –  the audience arguably cared less about autistic perspectives and more about NT perspectives on autism. However, the fact that my feelings were respected astounded me: I was prepared for a day of autie trauma. I only received one question, which was from an autistic woman/mother, who asked if I was on a certain Yahoo listserv. A very easy, yes-or-no question.)

I have been lately wishing that I could do the same thing at rhet-comp conferences that I did at NATTAP. While post-presentation discussion sessions are certainly useful and sometimes necessary, they’re so unpredictable. I realize that everyone, on some level, fears being asked a question they don’t know the answer to. That’s human. However, I additionally fear getting questions that I do know the answer to: sometimes my brain just shuts down, especially when I’m up front, where most of the fluorescent lights are. There’s so much to think about: I have to feign eye contact at several junctures, and I have to very consciously think about my volume level, and I have to keep my hands civilized, and I have to worry about “conversing” with an unpredictably sized audience. I like the idea of having an e-chat discussion after a conference presentation. But that’s probably unrealistic.

Many listservs have recently posted the CFP for Autreat 2009, which I’ve never attended. Upon reading about the history of this conference and ANI, I was struck by Jim Sinclair’s description of “interaction badges”:

Even verbal autistic people are likely to have difficulty being verbal all the time, especially under conditions of sensory overload such as are likely to occur at a conference. Many of us had found ourselves struggling with speech shutdown at conferences. Non-autistic people would want to talk to us, when we needed to be left alone for a while. Of course we could always leave and go off somewhere by ourselves; but sometimes we were still interested in listening to presentations or being around our friends, even when we weren’t up to having interactions. After discussing these situations on ANI-L, we created color-coded interaction signal badges. These were plastic name badge holders, with a piece of red paper on one side, and a piece of yellow paper on the other side. People needing to restrict interaction could wear a badge with the red side facing out to signify “Nobody should try to interact with me,” or with the yellow side facing out to signify “Only people I already know should interact with me, not strangers.”

The interaction signal badges were easy for autistic people to use, and easy for both autistic and non-autistic people to understand. We still use them at Autreat. In 1997 we added a third color to the badges, in response to a concern expressed by an autistic person who was planning to attend her first Autreat, and said she sometimes wanted to interact with other people but had trouble initiating an interaction. We added a piece of green paper to signify, “I want to interact but am having trouble initiating, so please initiate an interaction with me.”

I especially relate with the green badge (though there are certainly times where I wish I had a big yellow one). I’m terrible at initiating conversations with people. However, I’m probably worse at sustaining conversations. When I first started graduate school a few years back, one professor told me he had no clue that I was paying attention until he read my writing because, in class, I was very non-responsive and hardly looked at him. So maybe the addition of an orange badge would alert conversants that the badge-holder is listening and/or enjoying the conversation, even if she appears bored or mentally out to lunch.

I can dream, right?

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I wrote the following blurb for the Asperger’s/HFA group I’m a part of, Aspirations. Some version of this will be appearing in the December newsletter. Last week, I was able to spend some time at the NATTAP Conference (Network of Autism Training and Technical Assistance Programs).

On Friday, November 21, I hopped on the #2 bus and headed toward the convention center, on my way to see one of the keynote speakers at the NATTAP Conference—Temple Grandin. I held a name badge in hand, a badge that wasn’t my own, largely owing to the fact that I was too miserly to register for the conference. Once I walked through the front doors, I pretended to be Jeff Siegel [an Aspirations facilitator], and no one noticed the misnomer, excepting one creepy guy who said “Hi, Jeff” as I walked past a table in the exhibition hall. After that point, I removed my fraudulent tag and moseyed into the auditorium.

The session began nearly 15 minutes late, and then started off with four speakers who, though I’m sure were important, relied entirely too much on PowerPoint and monosyllabic words. I tuned them out, instead fascinated by the lighting effects in the room. The stage had two large fiberglass panels on the ends, each of which slowly turned different colors, hushed reds and purples and greens. Center stage and affixed from several light fixtures hung a large cardboard globe, and descending from the middle was a strange shape, the symbol of the conference—I spent about twenty minutes debating whether it was a puzzle piece or a person that looked like a puzzle piece. Alas, I could wonder no more, as suddenly Temple Grandin was called onto the stage, each of the boring people filtering back to their front-row seats.

I’ve never seen Grandin speak, though I have read several of her books and have watched some of her presentations on YouTube. Calling her energetic would be an understatement. Her talk about autism spectrum disorders had the fervency of a televangelist, minus the damnation and tithing stuff, if you can imagine that. For those not familiar with her work, Grandin was born in 1947 and sported all the symptoms of full-blown, classic autism. Today, she’s a professor at Colorado State and has designed half of the facilities for livestock that exist in the U.S. And, according to her blurb in the NATTAP program, she’s arguably the most famous autistic person in the world. HBO is currently filming a movie about her early life, with Claire Danes playing the role of Grandin. As Grandin discussed her visit to the Hollywood set during the keynote talk, she mentioned how she cared less for meeting Claire Danes than she did for playing with all the neat electronic toys on the set.

What I really enjoyed about Grandin’s talk was her perspective on ASD—a focus on strengths rather than deficits. Sometimes I read autism-related articles or watch documentaries on Asperger’s and walk away thinking “woe is me,” wondering why I even bother to tie my shoes in the morning or trudge through the existential quandary that is life. Grandin described three thinking types that generally typify persons with ASD:

1. Visual thinkers (poor at Algebra)
2. Music and math thinkers (love patterns)
3. Verbal fact thinkers (poor at drawing, tend to be the aspies who love History, fact-finding, and/or language-based subjects)

Grandin continually emphasized that “eccentric” is OK, that not everyone should be “plain vanilla,” that autism is variable, that no one on the spectrum is of a cookie-cutter mold. The only way to help insure success of those on the spectrum, she argued, is to drill social skills into them at a very early age and in very specific ways.

Grandin claimed that there is a big difference between old and new aspies, that aspies of previous generations have tended to be more successful in jobs and relationships because rules and manners were more structured in the 50s and 60s. She uses herself as an example—her success, she maintained, dealt largely with her mother being very specific about what qualifies as rudeness. “Neurotypicals,” she lamented, “are too vague today.”

Grandin concluded a bit prematurely, mostly because the boring people at the beginning started late. She suggested that practitioners learn to better identify the strengths of those on the spectrum and capitalize on those strengths for employment. She also stressed that many people with ASD “are what they do.” After her talk, she sat at a table in the exhibition hall and signed books. In true miserly fashion, I brought my tattered, heavily used copy of Thinking in Pictures, an ex-library book that I splurged three dollars for on half.com. Grandin signed it and made a comment about the old library stamps. I told her that I was a poor grad student surviving on Ramen Noodles and my professors’ mercy, and she seemed to understand.

Photographic evidence: Grandin’s signature

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Who can speak in the autism conversation?
This is the question I keep returning to.

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.

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I’ve been reading a lot of stuff lately — and by stuff, I mean several articles that, per academic ritual, I should probably cite right here — stuff that deals with the role of the author in a narrative, with identity and positionality, with the influence of the researcher upon the researched, with authorial interpretation.

I’ve noticed a lot of theoretical overlaps between the readings from my independent study on autistic narratives/rhetorics and the readings from my Race & Literacy course. All of these readings, whether implicitly or explicitly, deal with issues of representation and community, as well as issues of authorship and subjectivity. To borrow a question from Jacqueline Jones Royster, who can/should/does speak for/with/about whom?

Royster’s question seems especially pertinent in the writings and conference presentations of Paul Heilker, who, in claiming that autism is a rhetoric, is careful to delineate between autism communities and autistic communities — the former composed largely of parents and charities, the latter composed largely of individuals on the spectrum. These two communities, as one can probably gather from the unrelenting snark that has come to constitute my blog, are “warring” factions. Both claim representation rights; both claim to be voices of/for/with/about autism. The Autism Society of America claims to be the voice of autism; Autistics.org claims to be the real voice of autism (Heilker, CCCC 2008).

Interestingly, the primary audience of most large autism charities isn’t the autistic individual: by and large, their audience seems to include everyone but the autistic individual. Parents, teachers, supporters, doctors, researchers, students, any NT with spare pocket change — these are the bodies that such organizations strive to reach. Thus, ASA, for example, assumes its role as the voice of autism, rather than the autistic voice, because they imply that autistics, whether speaking or non-speaking, cannot autonomously self-advocate — for autistics to do so would go against the DSM IV criteria, or somesuch nonsense. Moreover, in highlighting autie and aspie testimonials on their home page, ASA suggests that individuals on the spectrum need an NT voice behind theirs in order to “function.” We autistics are high-functioning only inasmuch as we have NTs to brace us: note the lining up of ASD narratives next to narratives of NT mothers and NT speech pathologists. (Of course, I should here note that ASA is a lot more “ethical” in its operations and approach toward autistics than, say, Autism Speaks and other cure-autism conglomerates.)

Voice and representation are likewise large issues in writings that concern race and literacy. Morris Young, in Minor Re/Visions: Asian American Literacy Narratives as a Rhetoric of Citizenship, contends that the literacy narrative, as a genre, has the potential to allow Others to project their voices, to position themselves as individuals against their communities, to analyze the hegemonic functions of literacy, to “become minor” in the process of writing. The dominant theme in Young, as well as in John Duffy’s Writing from These Roots: Literacy in a Hmong-American Community, involves the relationship between self and society.

Autism is derived from the Greek word autos, which means self. Drs. Kanner, Asperger, and Bettelheim frequently described autistics as being inherently self-centered, trapped in their own worlds, imprisoned in their asocial bodies. Dr. Simon Baron-Cohen propels lack of theory of mind as an accurate description of autistic selfhood, this inability to empathize and recognize the intentions of others serving as a large marker of autistic existence. Ann Jurecic and Lisa Zunshine, both scholars in English Studies, also herald theory of mind in relation to autistic identity, bringing up issues of mindblindness and autistic egocentrism.

If autistics are seen as self-centered, self-absorbed, and self-isolating individuals, it’s little wonder that the idea of an autistic community — in contrast to an autism community — seems paradoxical. How can a bunch of self-absorbed selves form a community? How can a bunch of self-absorbed selves relate to a bunch of self-absorbed selves? How can a bunch of autos, autistic voices meld into a (semi)unified, real autistic voice?

I think it’s important to note that these questions largely stem from autism discourse, rather than autistic discourse, and perhaps this is why so many spectrumites loathe “person first” terminology, preferring “autistic” to “person with autism.” The phrase “person with autism” suggests that, should the autism be removed, a “real” person will emerge — without any trace of that asocial, autos garbage. It denies the intermingling of the autistic autos and bodily self. It denies the intermingling of autos and voice.

All of this rambling brings me back to the title of my post, to the idea of the self-indulgent narrative. In Literacies, Experiences, and Technologies, Sibylle Gruber writes,

I would like to argue that I don’t use the personal for capital investment, that I don’t use the personal as a mirror reflection of a self or culture, that I don’t slot myself or others as being able to speak for a group, and that I don’t disembody the personal…. But it is also important to acknowledge that personal narrative — or self-reflexivity — can become ’self-indulgent or narcissistic’ …. In other words, despite conscious efforts not to use identity politics for individual gain, it is often difficult to escape the unconscious or subconscious tendencies to justify, defend, and promote an individual, albeit theoretically founded and supported, perspective. (22)

Throughout her book, Gruber positions herself, as a foreign researcher, in the contexts of those she researches. Gruber contends that personal biases are a real part of research, and she thusly justifies her use of personal narrative. Yet, she also fears narcissism, that her narratives about her ESL status are misplaced, autos-ridden tidbits of the personal.

Similarly, in “Tender Organs, Narcissism, and Identity Politics,” Tobin Siebers writes of the ways in which personal narratives of disability are often conflated with narcissism:

It is wrong to study what you are. (41)

But I also think that people with disabilities need to resist the suggestion that their personal stories are somehow more narcissistic than those of able-bodied people. If we cannot tell our stories because they reflect badly on our personalities or make other people queasy, the end result will be greater isolation. (50)

Now we of the tender organs need to introduce the reality of disability into the public imagination. And the only way to accomplish this task is to tell stories in a way that allows people without disabilities to recognize our reality and theirs as a common one. For only in this way will we be recognized politically. (51)

I worry that my writings about autism are, or will be, perceived as the self-indulgent, narcissistic writings of a pathological person with autism. As a I read over my previous post, a post that is rife with the personal, I wonder about what I should strive to be. Is this a personal blog or an academic blog? When the autism community reads my writing, do they immediately believe that I lack a theory of mind? Am I too autos for the masses — do I need to de-auticize myself in order to be seen as a voice of/for/with/about autism? In what ways can I be an autistic voice who writes for/with/about/to/at the voice of autism? How do we begin to bridge the realities of autistics into the public imagination of autism?

Paul Heilker and Jason King suggest that the end to the autism/autistic war — or, more likely, the beginnings of an autism/autistic truce — may involve Krista Ratcliffe’s concept of rhetorical listening. Rhetorical listening, unlike empathy, invokes understanding commonalities and differences. Ratcliffe claims that

understanding means listening to discourses not for intent but with intent — with the intent to understand not just the claims but the rhetorical negotiations of understanding as well. To clarify this process of understanding, rhetorical listeners might best invert the term understanding and define it as standing under, that is, consciously standing under discourses that surround us and others while consciously acknowledging all our particular — and very fluid — standpoints. (28)

Notably, Ratcliffe does not claim that the solution to life’s problems necessitates peeking into the mind of the Other. Rather, she stresses the necessity of difference, those autos features that particularize us as individuals.

I find it ironic that, in this discussion of the necessity of difference and personal narrative in disability writing, I haven’t been very personal. As a result, I now share this photograph, which is also meant to break up the textual monotony of my blog:

[A portion of my ELO collection: my perseveration of choice]

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The first time I read Mark Haddon’s The Curious Incident of the Dog in the Night-Time was by force: I was in a graduate seminar on disability studies and the novel was part of the assigned reading. Prior to that point, I’d made the firm decision to refrain from reading it. The novel frequently came up in Livejournal, Wrong Planet, and Aspies for Freedom. And while some spectrumites thought positively of the book, it seemed to me that the negative remarks were enough to prevent me from being curious about Curious.

I don’t hate the book — but I don’t know that I like it, either. In fact, I don’t know how to respond to it. I feel as though I only know how to respond to the response to Haddon’s book. I don’t trust non-autistic audiences with it. And that statement of “trust” makes me feel sort of snobbish in a way, I suppose, but it comes from a very real place of hurt and frustration.

My first IRL, offline experience with Curious occurred prior to reading it. I was a Master’s student at the time, and I’d made the decision to tell no one of my Asperger’s. Instead, I went along with the imposed labels of shy and neurotic and OCD and friggin’ weird, man. (Any time someone hears me talk about ELO, they tend to walk away with the friggin’ weirds.) I was talking with a professor about teaching composition, and she started detailing some of the difficulties she’d encountered as an instructor, and some of those difficulties were students with LDs and ASDs. The moment I heard her mention Asperger’s, my head grew sort of faint, and I made the impulsive decision to come out. I started the coming out process by saying something to the effect of, “One of my teachers once suggested I had Asperger’s…”

She abruptly cut me off. You? Have Asperger’s? she balked. You’re such a good writer. You should take that comment as an insult.

I was completely taken aback, unsure of how to respond. At that moment, I suddenly didn’t want to be Aspergian any more — I was ashamed of myself, and I did my best throughout the rest of our conversation (or, rather, her conversation) to feign neurotypicality. As I turned to walk away, she suggested that I read Curious. I was obviously nothing like the main character in that book, and thus I couldn’t be autistic.

Fast-forward to the day when I was forced to read Curious. The book scared me. I knew I was about to enter into a non-autistic narrative of an autistic, and while I gathered that the author’s construction of Christopher wasn’t meant to essentialize spectrumites, it had nevertheless served an essentializing function for me. Moreover, I feared that, after reading it, I would begin to doubt my own diagnosis. Autism diagnosis is based on behavioral observations, and not on “objective” brain scans or blood tests. What if all of my doctors were idiots? Did they think that I was the female Christopher? Because I’m not the female Christopher, and if they thought that I was the female Christopher, then I would need a new neuropsych eval, post haste.

I hate that I have to defend my Asperger’s diagnosis to an uneducated public who refuses to be educated. I’ve been so brainwashed into being socially appropriate that the huge measures I take in order to appear neurotypical are largely invisible to the people I’m in contact with. Consequently, other than seeming weird or shy, I don’t seem to be much of anything. I’m certainly not the autistic who screams in supermarkets: I’m the autistic who mentally shuts down in supermarkets, the one who can’t talk to her husband by the time she reaches the produce aisle because the lights and noises have become one inseparable sense in her brain, the one who starts to taste sounds and choke on lights, the one who squeezes her arms and wrists so hard that they bruise, the one who is tiny, mute, and virtually invisible, like every good girl should be. I doubt I even know how to scream. If I can hear my voice, I think that others can hear it too, and I often talk in mumbles and whispers, unaware that I am talking in mumbles and whispers, unaware until someone briskly tells me to “speak up.”

Because I am silent and invisible, because I don’t fit the Christopher-esque mold, I have to defend myself and my diagnosis. And I realize that this isn’t the fault of Asperger’s: it’s how we think about Asperger’s, how we want to make neat little categories and stick to them.

Back to the book: When I first cracked open the seizure-red cover of Curious, I was immediately greeted with several book reviews, each of them sappy and gushy. I remember, upon reading them, having the instinctual desire to vomit.

Fast-forward to this week — two days ago, to be precise. I’m attending a book club for people with AS/HFA, a book club I’ve been attending since early summer. This book club has grown from a core of five aspies + one NT moderator to eleven aspies + four NT moderators. At this meeting, we’re voting on what our next book will be. We’ve just finished Twilight, a teenage vampire romance novel that half of us like and the other half want to burn (and I’m the middle one — the one who just wants to gag). After a couple rounds of voting, we’ve narrowed things down to two possibilities: Catch-22 and Curious.

Before the final vote, three aspies voice their vehement objections to Curious. They maintain that it’s the most simplistic, vilest, dumbest, evilest book they’ve ever read. We vote, and Curious wins — because two aspies have abstained from voting, and all four NTs cast their votes for Curious.

One aspie totally flips out in authentic autistic fashion, screaming and jumping and flailing. Another covers her ears. Two others start yelling. Two leave the table. One looks bewildered. My hard drive shuts down, then crashes, and I mentally leave planet earth, effectively mute and literally senseless.

I don’t remember much else, except that once my brain foggily deciphers the words “next time,” I grab my book and run, and a few alarmed people chase after me asking what’s wrong, and all I can hear and see in my brain is the f-word, which I try very hard not to say, so I run outside without my jacket, and the cold jars me, and one of the moderators tries to calm me down, and I mince my words, mince my breaths, mince my papercuts and bruises that I don’t remember acquiring, mince, mince, mince.

It is now today, and I have again cracked open Curious, again by force, reopening one of the papercuts I unknowingly formed with Twilight while tranced the other evening. I sit here, thinking about audience and its intersections with empathy, that favored NT buzzword. And I read the bylines:

“This original and affecting novel is a triumph of empathy.” — The New Yorker

“Mark Haddon’s portrayal of an emotionally dissociated mind is a superb achievement. He is a wise and bleakly funny writer with rare gifts of empathy.” — Ian McEwan, author of Atonement

“Exceptional by any standards. Haddon sticks rigidly to the limits imposed by autism without sacrificing literary viability. When we look at the world through Christopher’s eyes we see it more clearly and understand ourselves better. What more could you want of a book?” — The Sunday Telegraph

“Wonderfully surreal…. Heartbreaking and inspiring…. It is hard to think of anyone who would not be moved and delighted by this book.” — Financial Times (London)

Mince, mince, mince.

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