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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Apparently, there are a lot of people who fake Asperger’s on the internet. Or, at the very least, apparently there are a lot of people who, whether or not they have Asperger’s, use Asperger’s as an excuse for ridiculous behavior. Key word: apparently.

Enter Luke McKinney’s The 5 Most Retarded Causes People Are Actually Fighting For on cracked.com. The title itself cues readers into the sort of rhetoric that McKinney abides by. Item #1 on his list is the Asperger’s Pride Movement:

Asperger’s is a real disorder for some, but has turned into a kind of “get out of self-improvement free” card for legions of socially awkward Pokemon fans. This latter group doesn’t care about your “medical credentials,” “basic common sense” or even “knowing people who actually do have Aspergers.” This syndrome they read about on Wikipedia once is their winning lottery ticket to a life of never having to learn how to interact with other humans. Welcome to the Aspergian Pride movement.

I’m really at a loss as to where this attitude toward Asperger’s comes from. It’s an attitude I encounter quite a bit online. In aspie forums, we often discuss the difference between using Asperger’s as an explanation versus using Asperger’s as an excuse – but the dominant NT perception online seems to be that Asperger’s is an excuse about 90% of the time, or that Asperger’s is a largely mythical disorder.

Per my own understanding, Asperger’s as explanation involves disclosing in such a way that communication and understanding are more easily achieved for all parties, regardless of neurological wiring. Conversely, Asperger’s as excuse occurs when the goal involves getting out of or getting away with something, e.g., Mom, I can’t clean my room because I have Asperger’s and am resistant to change.

I don’t think that the latter example, Asperger’s as excuse, is as problematic of a phenomenon as people on the net make it out to be. Who hasn’t used something as an excuse to get out of something? Moreover, there is a fine line between explanation and excuse, I think. While there is very little I “cannot” do, there are many, many things that I have extremely great difficulty doing, just as there are many, many things that I “can” do, but can only do very poorly. (For example, I can physically make eye contact. However, in forcing myself to do so, I stop paying attention to other things, and I also maintain eye contact in a very obviously forced, unrealistic fashion.) The aspies I’ve met generally don’t use Asperger’s as a way of excusing themselves for being manipulative jerks, as cracked.com would have people believe.

This whole debate — the excuse versus the explanation — goes back to the ADA, I think, especially to issues of accommodation. If we judge PWDs based on “retarded causes” and fakery claims postulated by internet sources, then accommodations for largely “invisible” disabilities like ASD or LDs become unsubstantiated complaints made by a pack of faking whiners.

As an example, I think to my own documentation that sits in my university’s office for disability services. One of the suggested accommodations involves class participation, a request that I be entirely absolved from verbally participating in class. Now, I know how to speak, and do speak, despite having difficulties. Does this make my accommodation an excuse made by a lazy whiner?

I should also mention that I’ve rarely asked disability services to contact my professors. I am fearful of being perceived as lazy, even though, legally, I shouldn’t experience such backlash. However, I’ve generally found that telling my professors of my difficulties — without invoking the disability/autism label — has worked as well as (and sometimes better than) asking disability services to intervene. One negative experience with disclosure comes to mind: my ODS counselor contacted a professor of mine, mid-quarter, and informed them (I’m being gender-neutral on purpose) that I was registered with their office and had communication issues. My professor, in response, said, “Melanie has a disability? But she’s smart!” My professor treated me differently after this point, and tended to be very patronizing.

I wonder how it is that we identify these so-called fakers who take excessive pride in their fraudulent disorders, disorders which, when real, supposedly cause “extreme suffering.” Because that’s the point, isn’t it? Unless we hate ourselves, we don’t have a real disability.

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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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