Autism SpeaksU Initiative

Ugh.

Autism Speaks has launched a series of college/university chapters, a program that started at the beginning of the 2008-2009 school year. My university, Ohio State, is currently in the process of forming its own chapter. Over the past month, three people have tried to “recruit” me for it. My unabashed disgust for Autism Speaks notwithstanding, I think I’ve been tactful and rhetorically “appropriate” in my conversations with these people — conversations in which I’ve tried to communicate why Autism Speaks is a harmful organization. Unfortunately, my appeals have not been persuasive thus far.

In December, an NT grad student in the autistic group I belong to forwarded me a notice from the Autism Speaks faculty advisor. My grad student friend knows of my disdain for Autism Speaks and suggested I write the faculty advisor, or possibly consider joining the group to provide balance. I opted for letter-writing, of course, because in no way do I want to be affiliated with Autism Speaks. In my letter, I explained neurodiversity and Autism Speaks’ problematic foci on cure and prevention. The faculty advisor, in response, said that although she empathized with my position, the group would maintain the vision of Autism Speaks.

In the faculty advisor’s “defense,” I’m fairly certain that she was well-meaning in her statement and that she has nothing but so-called “good intentions” concerning her involvement with Autism Speaks. I think that many people involved with this organization, as harmfully misdirected as it is, have good intentions despite their woeful ignorance. However, the moment I saw the word empathize in her letter, something in me snapped. Obviously, she was not empathizing with me, and her remark came across as quite patronizing.

I’ve reached the point in life — in my growth as a person who has accepted and embraced being autistic — where the “good intentions” excuse just doesn’t cut it for me any more. If a bunch of autistic people are telling an organization that their group’s vision is hurtful, harmful, and unrepresentative, and they just keep chugging along obliviously, how does that make them well-intentioned? Or empathetic for that manner?

Empathy is such a charged, loaded word in autism discourse. By popular autism definitions, I am pathologically (and negatively) unempathetic. The inverse of this statement, if we herald the lovely NT/autistic binary that so many people love to herald, is that NTs are normatively (and positively) empathetic. Hence, the assumption is as follows: I can’t understand their minds or motives, but they can clearly understand mine, and, moreover, they’re so in tune with me that they understand my mind and motives better than I do. Empathy becomes the ultimate bodily displacement: the dominant discourse-wielders fit better in my shoes than I do.

In my graduate class on digital literacies, we’ve been exploring various research methods, one of which is discourse analysis. Our professor assigned us a book chapter by Thomas Huckin, “Critical Discourse Analysis and the Discourse of Condescension.” I’ve found myself employing his method of analysis on most everything I’ve read for the past five days — especially conversations concerning Autism Speaks’ role at my university. In his piece, Huckin shares correspondence between himself and a Utah state senator. Huckin wrote a letter in protest of the legislature’s plan to cut the higher education budget in order to fund highway construction (164). In response, the state senator used a sickeningly and politely patronizing tone, a tone Huckin defines as being discursively condescending:

“…the discourse of condescension has three main characteristics: First, it contains nothing overtly critical or negative, and often proffers insincere praise; second, it assumes a difference in status and worth between speaker and listener (cf. Goffman on ‘alignment’); and third, this assumed difference is disputed by the listener.” (167)

In the spirit of Huckin, I’d claim that the response I received — as well as Autism Speaks’ general behavior as an organization — is mired within a discourse of condescension. For example, in response to my embrace of a social approach toward disability, as well as the list of problems associated with Autism Speaks’ “vision,” the advisor wrote:

Thank you for your kindly worded letter.

[#1: polite praise of my original letter]

I am very familiar with this stance and I completely empathize with your perspective. However, this group will maintain the same standards and vision as that of Autism Speaks.

[#2: The power differentials are firmly rooted in an appeal to empathy. As described above, within the context of autism discourse, claims toward empathy invoke a rhetorical power play. She knows that, as an autistic, I am supposedly “mindblind,” and that, as a neurotypical, she supposedly has mental ESP. By invoking empathy, she dons discursive condescension and places her perspective regarding autism on a pedestal far above mine: she supposedly has the cognitive capacity to understand what it’s like to be an autistic person who is continually told that she’s an empty shell who’s unworthy of existence, and, because she supposedly understands what it’s like to be thought of as a mindblind, burdensome human being, she can segue into the “however” clause and uphold Autism Speaks’ combative ideology.]

The letter goes on from here: she continued by saying that Autism Speaks was “moved” by the October 2008 campus walk, and she also expressed her desire for greater community involvement and “working together” with other campus autism groups. However, #3 arises in that I, as the recipient of this letter, dispute our postulated difference in “worth” as “functioning” humans — she asserts a hierarchy of empathetic worthiness; I don’t. In this letter, the writer employs rhetorical tools common to (neuro)typical autism discourse, and she employs those tools to make light of her opposition’s opinions and experiences.

Autism on the beach

I’ve noticed a common cover design in recent autism books: that of a child, usually a boy, hovering near a body of water. In fact, the more memoirs I read, the more I tend to notice this autie-water depiction. These representations appear on books I love, books I despise, and books I feel luke-warm about. It isn’t as though the autie-water portrait appears solely on curebie diatribes or solely on neurodivergent musings. And so I wonder about these aquatically-oriented representations of autism.

Born on a Blue Day by Daniel Tammet

The RDOS Aspie Quiz asks whether or not I have a fascination with flowing water. I’m not entirely sure how this relates to autism, but perhaps it has to do with perseveration, or attention to detail, or the fact that flowing water is very entrancing and makes really cool whooshing sounds?

Reasonable People by Ralph Savarese

Other than the quiz-question theory, my only other thought behind autism on the beach involves metaphor. Does the water symbolically represent autism somehow? Why all the blue? Are we supposed to feel a certain way, think a certain way, assume a certain way before we read these books? An old, overused adage tells us that we should not judge books by their covers — an adage perhaps devised by a cantankerous, ne’er-do-well book salesman? But we do judge books by their covers. And I wonder what we’re supposed to judge about autism on the beach.

Weather Reports from the Autism Front by James C. Wilson

I know that Wilson’s cover photo is an actual photo of his son, a happy moment from a vacation. The cover makes somewhat more sense with this tidbit of knowledge. Yet, I’m very surprised by the puzzle-piece motif on Wilson’s particularly beachy cover: despite being a parent narrative of an autistic son, I consider his work largely neurodiverse in scope. In fact, one thing I most appreciated about Wilson’s work was his frequent reference to autistic bloggers. His (positive) mention of Autism Hub blogs far exceeded references to medical manuals and statistics. He did not portray his son, nor autistic individuals generally, as a medical mystery in need of research and neurobiological scrutiny. Though Wilson claims that he cannot fully understand his son and that his son cannot fully understand him, he portrays NT-autistic communication in a way that speaks to a social, neurodiversity model of autism rather than a model that seeks to eradicate autistic difference in favor of a wholly NT understanding.

Thus, the puzzle motif here is quite puzzling.

Making Peace with Autism by Susan Senator

Making Peace with Autism by Susan Senator

Of course, there are many people and protocols involved in producing, editing, and publishing a manuscript, discussions and decisions that readers simply aren’t aware of, aren’t privy to. How much influence did Wilson hold in the design of his cover? His photo made the cut — but was this the photo he was originally hoping to use? Did he vie for the (ab)use of the color blue in his cover? Did he hold any sway in the puzzle configuration? Was this his cover or his publisher’s cover?

The cover of Daniel Tammet’s Born on a Blue Day makes sense: the blueness of the cover directly relates to the title and perhaps the synaesthetic topic of the memoir. Moreover, more so than the other images offered here, Tammet’s cover focuses intently on sky. Ralph Savarese’s Reasonable People also shows more sky than water, with the child’s face being framed by the expanse of sky. With Senator’s cover, it’s hard to discern whether the water ends — and, interestingly, in all of these covers (with perhaps the exception of Wilson’s), expanse or limitlessness seems to be a rather large theme.

Women from Another Planet? by Jean Kearns Miller
[omg, women can have autism?] </sarcasm>
[ETA: my sarcasm isn’t directed toward the book — which is awesome — but toward the statement before the sarcasm brackets.]

DJ Savarese, Ralph’s Savarese’s teenage son, wrote the last chapter of Reasonable People. DJ uses FC to communicate, and a large focus of the book is dedicated to legitimizing FC as a potential channel of communication for non-speaking autistic. In the context of the book cover, I find this particular passage from DJ’s chapter to be quite illuminating:

“I dream of being a political freedom fighter. I read that pure real people in especially just free waters insist my real decisions really wasted. They think well respected, tested as normal kids are the okay to teach ones. They forget those lost kids. They’re the ones like me who poke or look like they’re not paying attention” (432).

The mention of “free waters” following “being a political freedom fighter” really strikes me here. This is an image I can digest, can embrace when considering autism on the beach. There is something freeing about water, calm about blue — peaceful, to borrow an idea from Senator’s book cover.

Yet, I don’t think that the audiences for these books — or other books that sport autism-on-the-beach covers — will immediately recognize or infer the freedom element of these cover illustrations. As calming and peaceful as blue is, as free as it is, I think blue also runs the danger of being melancholy, solitary, bluesy. I also wonder what stereotypes are reinforced by these images: in each, the (presumably) autistic individuals stand alone by the water as if they are locked into their “own little world.”

This isn’t to say that autistics never go off into their own little worlds, that autistics never stand alone, that autistics never love water and beaches. But I daresay that the frequency of this alone-on-the-beach-and-deep-in-thought imagery constitutes its own weird little genre. And any time a metaphor becomes popularized in autism discourse, I think we need to examine it, to rhetorically analyze it and question it.

New look

I’ve upgraded from WordPress 2.2 to 2.7, a much needed update. Consequently, I’ve several new blog toys to play with, such as new themes and widgets!

Over the next few days, the layout might change around a bit as I get the newness of 2.7 out of my system. I generally don’t consider myself the sort of person who likes to sport new blog layouts every day, but I’m interested in what my new upgrade can do.

Just a warning.  🙂