Autism SpeaksU Initiative


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.

Self-indulgent narratives

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; 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 autistic 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. Still, note the scare quotes around “ethical.”)

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. Kanner, Asperger, and Bettelheim frequently described autistics as being inherently self-centered, trapped in their own worlds, imprisoned in their asocial bodies. 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:

Some of my ELO collection -- albums, posters, t-shirts, and a clock!
[A portion of my ELO collection: my perseveration of choice]

Empathize with this

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. Autistics 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 autistics have difficulty empathizing with NTs, so too do NTs have difficulty empathizing with autistics. (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 and empathy
[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 autisticnot what it is like for an autistic to be an autistic. The same could be said about an autistic person 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).