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 ASL? 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.
I like the way Wordle emphasizes the most-used words in my blog. Wordle is sort of like an image-based invention activity, in a way. In looking at how these words are arranged — words that I’ve already used — I wonder at how I might balance the ratios in further writings. I also wonder about what’s missing, or what’s hardly visible: words such as rhetoric, theory, disability, and, most shockingly, Jeff Lynne and ELO. I need to turn up the dial on my perseverative brain!
Posted by Aspie Rhetor at 10:25 pm. Filed under: image
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 communitiesand 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, ASA’s primary audience 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 ASA strives to reach. ASA assumes its role as the voice of autism, rather than the autistic voice, because they imply that autistics, whether speaking or non-speaking, cannot 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 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.
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 autos perseveration of choice]
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 theresponse 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, fuck, fuck, fuck.
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)
So, one of the popular medical theories surrounding the “puzzle” of autism spectrum disorders involves theory of mind — or lack thereof. Possessing a theory of mind involves the illusion that one can understand what another human being is thinking or feeling, a neurotypical ESP of sorts. Theory of mind largely concerns empathy, the ability to place oneself in another’s shoes, so to speak. Many autism specialists, among them Simon Baron-Cohen, argue that people on the autism spectrum either lack a theory of mind or have an impaired theory of mind. Auties and aspies supposedly cannot empathize with or predict the NT world, and they thus have a whole bunch of communication issues.
Of course, I think that this theory has done quite some damage. Autistics have been represented as characteristically unempathetic individuals. And this “unempathetic” characterization has often been conflated with emotionlessness, conceitedness, apathy, and plain old malevolent and murderous evil. While I don’t deny that I’m hardly able to place myself in the shoes of others, I do posit that no one can really, truly place themselves in someone else’s shoes, unless we’re talking about literal shoes with similar foot sizes. In any event, I think there’s a limit and a danger to this thing we call empathy, because empathy isn’t wholly concrete and logical. Empathy, by definition, involves assumption and guesswork.
Empathy (or imagined understanding) can only be remotely successful when engaged between people with similar backgrounds, people who occupy similar social stations. Thus, in the same manner that aspies and auties have difficulty empathizing with NTs, so too do NTs have difficulty empathizing with auties. (James Wilson, in Weather Reports from the Autism Front, makes this very point about empathy. He can’t pretend to understand his autistic son’s experiences, his ways of knowing and being. Neurotypicals are just as empathetically impaired as autistics.)
[Jenny McCarthy: “expert” on autism, empathy, and strapless bras]
I like Dennis Lynch’s complication of empathy in “Rhetorics of Proximity: Empathy in Temple Grandin and Cornel West.” In his article, Lynch suggests that true empathy is never possible because such an act results in “bodily displacement,” in colonization or assimilation. So, in order for an NT to step into an autistic’s shoes, the autistic has to physically remove her feet from her shoes. As a result, when an NT claims to empathize with autistic experience, the NT is really imagining what it would be like for an NT to be an autistic — not what it is like for an autistic to be an autistic. The same could be said about an aspie or autie attempting to empathize with an NT: bodily displacement results.
Of course, because neurotypicality is the dominant neuro-discourse, NT ways of empathizing are considered more acceptable than autistic ways of empathizing. Warning of empathy’s co-optive dangers, Lynch writes,
Empathy in this way may seem like a harmless practice as one imagines how another may be feeling about an event, circumstance, or issue, but, as these critics argue, whatever’s empathy’s expressed aims may be, asking people to empathize usually locates the obstacles to empathy—to listening and to being heard—solely in the minds and habits of individual participants, and so obscures or ignores the political and economic and bodily dimensions of social struggles. (6)
This isn’t to say that empathy is inherently bad or wrong. However, empathy has its limits and dangers — severe limits and dangers. In assuming we can experience the fullness of another person’s “lifeworld,” we erase, or make transparent, very real differences (Lynch 9).
PETA (People for the Ethical Treatment for Animals) launched a new ad campaign three weeks ago in their fight against cow milk:
I’m not entirely sure where to start here, PETA. First of all, though I realize that ads meant for billboards and quick web visits are meant to be image-heavy and textually sparse, you’ve provided a whole lot of misinformation in your few measly independent clauses. In asking the lovely “Got autism?” question, are you trying to be sardonic and rhetorical, or are you in fact addressing the 20 million autistics who currently occupy planet earth? Because, sure, I’ve got autism, and no, I had no idea that studies linked cow’s milk to autism. But perhaps your “study” is actually synonymous with what I would call “total crap.” Just a thought. Although, since I’m autistic, it might be that my inner thesaurus is operating on some totally whacked out, casein-induced frenzy. Or how about not?
Anecdotally, some autistics note amelioration of their “symptoms” — e.g., isolation, meltdowns, sensory overload — when they’ve removed dairy and wheat from their diet. (Of course, PETA, you would never crusade against wheat.) However, this “improvement” is anecdotal and not scientific. It could be that some autistics experience food intolerances or digestive problems. But, see, there’s a big problem with this “link” word, PETA, because any protective parent who reads this will assume that milk has been shown to have a causative impact on autism, which it simply doesn’t. There are plenty of vegan autistics who are just as autie or aspie as ever. I suppose, on the positive side, if people were to assume that milk does cause autism, then maybe they’d get their kids vaccinated and stop with the mercury-poisoning mantras.
And then there’s that frowny face, PETA. The Cheerios are a nice touch, really. I’m glad you didn’t use Fruit Loops, because then that might play into the assumption that only autistic children are worth giving a crap about. But the frown — oh, the frown. I may have difficulty with nonverbals and facial expressions, but I think I’m accurate in concluding that Mr. Cheerio Face is quite weepy and pathetic. Basically, PETA, you and Mr. Cheerio Face are making the assumption that autism is a sad, sad thing. And, quite honestly, it’s not. Autism is a way of life, much like veganism, minus the liking of food-with-freaky-textures thing.
Autism is a brain disorder that causes sufferers to have extreme difficulty communicating and relating to others. It is often marked by anti-social behavior like screaming and obsessive repetition of actions, which takes an enormous emotional toll on sufferers and their families. PETA has created a billboard to alert the public to the connection between this devastating disease and dairy-product consumption. …
Anyone who wants to alleviate or avoid the devastating effects of autism should give cow’s milk the boot and switch to healthy vegan alternatives instead.
Again, PETA, you’ve mixed up some pretty important facts. Autism isn’t a disease. It isn’t something that you wake up with one morning; it isn’t something that you catch on the subway; it isn’t something that goes away. Autism is a neurological condition, a condition that affects how one’s brain is wired. Autistic brains and autistic existence aren’t devastatingly anything, unless you’re claiming that they’re devastatingly awesome.
You ask, “Got autism?” I say, “Yes, I do.” Somehow, though, I don’t think you were ever asking me anything in the first place.
I’m sad that September is ending in the next half hour. As a tribute, I’ve been listening to Jeff Lynne’s rendition of “September Song” repetitively in iTunes. I’m wondering if Jeff Lynne will ever release a new album again, whether he does it under his own name or the guise of ELO. His only solo album, Armchair Theatre, on which “September Song” resides, came out in 1990. Zoom, under the ELO name, was released in 2001. And, though several ELO albums have been re-released with bonus tracks, b-sides, outtakes, and alternate song versions these past few years, it’s been a while since anything wholly new has come about. I suppose all I can do is wait and wonder. (And listen to every ELO song in alphabetical order. That’s always fun.)
So, as I now listen to “September Song” for what is probably the fiftieth time today, I am also trying to complete a “map” of what I want to complete (and when) in my independent study this term. As I mentioned a couple of weeks ago, I’m focusing on autism, rhetoric, and representation. I’ve so many things that I want to read, and I keep having to tell myself that I only have ten weeks to accomplish this, and it’s hard for me to figure out what a workable reading load is. This past weekend I wanted to read a couple books written by parents of autistic children (including Jenny McCarthy’s book — and not because I like Jenny McCarthy’s ideas). However, I ended up on a rabbit trail of sorts, and ended up re-reading Michael John Carley’s Asperger’s from the Inside Out. (I suppose he counts as both an aspie AND a parent of an aspie. So I wasn’t completely off track.)
I also finally worked up the nerve to email a professor in the field of rhetoric and composition who has been doing work with autism. I wasn’t sure whether or not it was socially appropriate to email random professors at different colleges because of e-stalking I’d done via Google and CCCC electronic conference programs. So, I spoke with a couple of non-random professors (a.k.a. my professors) and got some tips on what to say (and what not to say). After spending three days writing the email and having two fellow grad assistants read over what I’d written, I finally hit “send,” and actually got a response — a very pleasant, encouraging, and helpful response. He sent me several pieces he’d written, and so I decided to read those in lieu of vaccine-bashing narratives.
I’m really excited to finally connect with people in my field who are looking at rhetorical and social constructions of ASDs. It’s hard to talk about my interests in autism to non-humanities people a lot of the time. It’s not their faults, necessarily: we just have different disciplinary approaches, and the things I’m interested in are wrapped up in language and philosophies about meaning-making and axiological assumptions, not studying brain functions or therapeutic interventions.
This past Sunday, remnants of Hurricane Ike struck Ohio. Winds registered with speeds up to 75mph. We were without power for about fourteen hours — our electricity came back early Monday morning, thankfully. Others, however, are still in the dark. Additionally, I’ve been without cable, internet, and phone until late last night. I’ve also been sick and unable to focus on my laptop screen without falling into a deep, luxurious napping state. I never realized how intense my internet addiction was until this week. I’m terribly behind in reading my blog feeds and in stalking people via their Facebook status updates. I’ve also been having recurring dreams about Gmail.
Classes start next week. I’m taking Race and Literacy, as well as two independent studies. One independent study is only three credits and involves doing proofreading and web work for Computers and Composition. The other is a more typical independent study, and I’ll be studying rhetorical constructions of autism/Asperger’s and writing a paper that I hope to submit for publication.
Posted by Aspie Rhetor at 9:37 am. Filed under: weather
My university — as with many universities, I’m sure — is holding a walk that is being sponsored by Autism Speaks. I learned of this via a newsletter sent out from my school’s disability services office. The promo blurb rambled about cures and epidemics and puzzle pieces and “combatting” ASDs. It all just really, really upset me.
Consequently, in my state of upset-ness, I attempted to parody an Autism Speaks YouTube video: I took an interview with Suzanne Wright (founder of Autism Speaks) and replaced a CNN dude’s questions with my own. It’s not great quality or anything, but producing this has kept me from fulfilling my head-banging desires, so it’s served at least one fruitful purpose. Using Vixy, I captured video of the CNN interview. I then extracted the sound using iMovie and recorded my own voice using Audacity. (I interspersed my “interview” questions with Suzanne’s Wright’s answers from the original video.) I also took a screen shot of the original video and modified it in GIMP to fit the neurotypicality disorder parody.
As does any stressed out grad student, I’ve been questioning my decisions. Why am I an English major? How on earth did I come to enjoy rhetoric and composition in the first place? How can I stay up later without abusing caffeine?
This past fall, in a composition theory course, we were asked to compose our “entry tales” into the field. I decided to focus my narrative on the intersections I saw between my experiences as an Asperger’s autistic and my experiences as a compositionist wannabe. As I reread what I wrote nearly one year ago, I’m struck by how much I’ve learned since then — “then” being a moment when I thought I knew lots. And I realize that I’ve got lots more to learn… which makes me want to stick around in academia for another fifty years, even if it does mean that I have to socialize.
What I wrote, October 2007:
I have in my stockpile two narratives for describing my entry into composition studies. The first, and most often used, relies on metaphor and describes my aspirations to become a computer programmer when, lo and behold, I “saw the light” and realized, via divine inspiration, that English studies held my salvation. This first story often makes for wonderful application fodder: it lumps my previous computer science background and my newfound love of writing into a realization of spiritual proportions, thereby opening up the digital communication doorway in composition studies. Through this story, I have somehow become the mediator of two discourses, the champion of writing/communication and technology or writing/communication as technology—anything dealing with both words, as long as the emphasis remains on writing or communication.
My second narrative, however, does not meld the right-brain/left-brain worlds quite so fluently. In fact, of the few times I’ve dared to disclose it, my audience has probably doubted the existence of any “mediating” corpus callossum. Like many an interesting story, this one begins with the lost me seeking to be a saved me—a high school drop-out attempting a technical college. There’s a stock character, Professor Dan, the pony-tailed English teacher with a penchant for hacky sack and Donald Murray truisms. At one point, as with all stock conversations, an exchange occurs between the outside-the-box hipster and the conservative, inexperienced student, an exchange meant to spark conflict and radical new ideas, man, an exchange meant to so totally blow minds—except, this exchange results in all of the wrong things. After reading several of my essays, Professor Dan tells me that I’m in the wrong major and that I should switch to English. And I, horrified that I could be in the wrong major, visit the English department head and switch majors that day. Later, I learned from a mortified Professor Dan, after one of his close-your-eyes-while-freewriting techniques, that he was merely complimenting me, not really suggesting that I must go change my major that instant. He had wanted me to “think about it,” to muse and question, not to take immediate action. I recall thinking, in a bemused and irritated manner, Why didn’t he just say so?
Literally speaking, story number one occurs after story number two: after I’d already done the deed, I began to question being a student of English. There have been other notable misunderstandings on my part along my path toward grad-student-hood, but all theoretical perceptions of writing and communication began, for me, the moment I failed to understand the subtext of an important conversation: I could not register the simple genre of “the compliment,” and yet there I was, an English major. As a composition scholar wannabe, issues of understanding, of perception versus reception, strike me as most paramount. As a student-teacher with Asperger Syndrome, a mild variant of autistic disorder, I supposedly cannot communicate appropriately: I am what some (but not what I) might label as idiot savant, social retard, or male-brained. In everyday situations, I fail to meet the aims of the English 110 text, Writing Analytically, to make the implicit explicit, to root out the subtext from the apparently literal, or the literal from the apparently subtext. And somehow, I am a person with a communication disorder teaching first-year students how to communicate. This paradox used to trouble me, therefore keeping me closeted and guarded—until very recently.
