Tomorrow (Sunday, October 9) is Autism Speaks’ annual Walk for Autism in Columbus. And tomorrow our local chapter of the Autistic Self Advocacy Network will unite in protest against Autism Speaks and their lack of community support, their high rates of executive pay, their lack of autistic representation, and their unethical advertising practices.

I’m so grateful for the outpouring of support that our ASAN chapter has received from people across, quite literally, the world. But as we approach tomorrow’s protest, I’d like to ask that as many people as possible (wherever you live) could help us inundate our local press affiliates with emails and phone calls.

Here is the contact information for Columbus-area media affiliates:

• The Lantern, Ohio State’s student newspaper. Email: lanternnewsroom@gmail.com; Phone: 614-292-5721.
• The Columbus Dispatch, Columbus’ major newspaper. Email: Ben Marrison, Newsroom Managing Editor, bmarrison@dispatch.com; News tip phone: 614-461-5200.
• NBC4.  News tips email address, stories@nbc4i.com; Phone: 614-263-4444.
• WBNS-10 TV. Breaking news tips (online form); Newsroom: 614-224-1010.
• WOSU, local PBS & NPR affiliate. Press Inquiries: mediarelations@wosu.org; Phone: 614-292-9678, extension 49730.

What you might say if you call or write (feel free to edit):

Hi! My name is _____ . (If you live in Ohio, you might say so. If you’re active in or support ASAN or another disability-related org, you might mention this as well. If you are Autistic or are related to or work with someone on the spectrum, you might mention this as well.)

I’m calling/writing because I have a story you might be interested in. Autistic advocates and their supporters are protesting the Autism Speaks walk in Columbus on the Ohio State campus on Sunday, October 9, from 8:30am until noon. They’re protesting Autism Speaks’ lack of family support. Only 2% of money raised by Autism Speaks goes to families. Given the severe budget cuts facing us today, this is outrageous. Autism Speaks is taking money from Ohio families in desperate need of support and services.

Autism Speaks doesn’t speak for us!

==

PROTEST DAY & TIME: Sunday, October 9 from 8:30am until noon (Facebook event page)

PROTEST LOCATION: Corner of Fred Taylor and Borror Drive, by the 4H Center, Ohio State campus (campus map)

In the past few months, I’ve had run-ins with folks from Unpleasant Autism Organizations That Want to “Save the World” with Fear, Pity, Eugenics, and Chocolate Bunnies in Gold Wrappers. Inevitably, we engage in some sort of debate — debates that usually involve me proclaiming the necessity of rights and self-representation and them proclaiming, “The children! The children!”

As The Unpleasants extol the virtues of cures and 600K salaries, they often feel the need to put down the organization that I represent. They blink several times, as though rapid eyelid movement might somehow compel me to make eye contact, and then exclaim,

“Well, what does your organization actually do, other than, you know, that self-advocacy thing?”

This is a question that triggers my gag reflex. What do we do, other than self-advocacy? Other than self-advocacy? Are you kidding me?

What does your organization do, other than self-advocacy?

The implication of this question is simple: Self-advocacy isn’t important or necessary. Self-advocacy is what poor little disabled people do to feel better about themselves. Self-advocacy may be cute and sweet and all fluffy like little newborn bunny rabbits, but it’s not nearly as important as, you know, developing prenatal screening tools or training the autism out of six month olds or inventing fraudulent divorce statistics or selling paper puzzles in the checkout lane. Self-advocacy relies on the existence of autism, and thereby autistic people — and to Unpleasant Autism Organizations, that’s the equivalent of Saw XXIII meets Stephen King’s The Stand (and perhaps with a little Xanadu to boot).

So what do we do, other than self-advocacy? To begin with, I’d assert that if someone even asks that question, they don’t fully comprehend what self-advocacy is. (Ignorance is the nicer interpretation, actually. Some of The Unpleasants do comprehend what self-advocacy is. And it scares them.)

I’d like to proceed, then, with some definitions.

What self-advocacy is not

1. Self-advocacy is not about pizza.
Self-advocacy is not about an able-bodied someone who is so heroic that, once or twice monthly, she orders Little Caesar’s for a bunch of crips. Self-advocacy is not about a neurotypical undergraduate who is, by definition, virtuous and self-sacrificing because he took 45 minutes of his life to teach a few autistic teens the rules of Monopoly. This is not self-advocacy. I repeat: This is not self-advocacy.

Delicious? Yes. Self-advocacy? No.

To recap: self-advocacy isn’t a code word that justifies the infantilization of disabled adults, nor is it about canonizing a new cohort of able-bodied saints.

2. Self-advocacy is not cute.
Hypothetical scenario: You’re making your way down the street and you come across a cardboard box full of puppies. What is this? you wonder. Answer: This is not self-advocacy.

Adorable? Yes. Self-advocacy? No.

I’m not going to say that self-advocates aren’t cuddly (because, you know, many of us freaking are). But, in general, self-advocacy isn’t about making able-bodied folks feel all warm and fuzzy inside. Self-advocacy isn’t about keeping disabled people on a leash, giving them their shots, patting them on the head, and then dropping them off at a kennel when you get sick of them.

3. Self-advocacy is not about one singular self.
In this regard, self-advocacy is somewhat a misnomer. Self-advocacy is not just about individual people — it’s really about, as my dissertation committee puts it, the collective advocacy of selves.

Self-advocacy is too often construed as unreasonable individuals asking for unreasonable and idiosyncratic handouts, when, instead, it’s about self-determination and knowing how one best learns, communicates, interacts, moves, works, lives, and so on. And — this is important — any singular act of self-advocacy brings with it larger implications for other self-advocates. The disability rights movement takes as its mantra the phrase nothing about us without us, a mantra that emphasizes the importance of self-advocacy within the context of a larger disability community.

For example: When I advocated for accommodations for my PhD candidacy exams, I advocated for others’ rights to accommodations as well. My ADA request was not limited to my individual, “idiosyncratic” autistic self — it set the stage (at least, that is my hope) for others to assert their right to equitable testing conditions.

Badass? Yes. Self-advocacy? Hell yes.

It’s easy to dismiss self-advocacy as “that annoying thing that disabled people do” when self-advocacy is thought to be just about that one cute little disabled person who will eat my cold, cheap pizza and who doesn’t really matter anyway.

4. Self-advocacy is not antithetical to disability.
I’m subscribed to a few parent listservs**, which has necessitated my overuse and borderline abuse of cherry-flavored antacids. There seems to be a recurrent, stereotypical theme to many of their discussions regarding their (adult) children: Developmentally disabled people lack the ability to self-advocate. In fact, it’s not uncommon for these parents to portray an inability to self-advocate as a prerequisite for being developmentally disabled.

Such thinking is, to put it mildly, grossly egregious. Whether your disabled child screams in the grocery checkout line or testifies in front of congress, he is self-advocating. Whether your disabled child throws peas in your face or writes a snarky blog post or falls asleep during board game nights or says NO in all capital letters, she’s self-advocating. And none of these things is less noble or gutsy than the other. Disabled people and allies alike would benefit from regarding self-advocacy in this manner.

Blocking traffic? Yes. Self-advocacy? Hell yes.

There is some truth behind the statement that disabled people, generally speaking, don’t know how to self-advocate. But that half-truth doesn’t stem from one’s dis/ability — rather, this perceived inability to self-advocate is the result of a society that doesn’t want to listen to us. We are not trained to self-advocate; we are trained to be passive. What able-bodied people are taught is a right, disabled people are taught is a burden. Able-bodied people*** have a right to education, gainful employment, romance, offspring, friendship, and independent living. Conversely, when disabled people pursue these things, we are told and retold of the burdens we impose — on our families, teachers, doctors, taxpayers. My education was not a right — it was a burden. These are the messages we receive, both implicitly and explicitly, on a daily basis. We are taught to be eternally grateful, to never raise a stink, because everything we do, need, or request is at someone else’s expense. And we are not as worthy as those able-bodied someone elses.

What self-advocacy is

It is here that I’d like to stop. I could write a million blog posts on what self-advocacy is, and why it’s so important, and why The Unpleasants should not represent it within an other than construction. But I think this is a good place to ask something of my readers. I’d really like to know what self-advocacy means to you.

Happy Autistic Pride Day.

–
* Puppy photo by sheeshoo

** I’m not insinuating that all parents believe this about their disabled children, nor am I trying to make a blanket statement about parents. I am, however, incredibly frustrated with the pervasiveness of this line of thinking.

*** I would be remiss if I didn’t acknowledge that this rights/burden framework goes way, way beyond disability — race, class, gender, sexual orientation, nationality, and so on, not to mention their intersectionalities.

I hear this a lot lately, primarily from undergraduate students who find autistic self-advocacy reprehensible and/or incomprehensible. In fact, at our protest this fall, someone actually came up to us and said, “If you can self-advocate, then you’re not autistic.” Way to disempower much?

Here is the wonderfully circular logic that has come to constitute much of my advocacy life lately:

Me: What you’re doing is hurtful.
Them: But we just want to help people like you.
Me: You’re not helping. Please stop.
Them: But we just want to help people like you.
Me: But you’re not helping.
Them: BUT WE JUST WANT TO HELP PEOPLE LIKE YOU!!

I’ve spent the past few months trying to devise smart-ass responses to this statement.

• But I just want to torture people like you.
• Oh! Yes! Of course! I’m sorry! I forgot that this was all about you!
• *cuing echolalia* BUT WE JUST WANT TO HELP PEOPLE LIKE YOU!!

And herein lies the frustration: Advocacy isn’t advocacy if it’s merely a synonym for self-interest. If the people you’re claiming to serve are objecting to your help, are telling you that you’re being hurtful… shouldn’t that give you pause?

I have no reason to be grateful for your hurtfulness. I shouldn’t have to grovel because you’re wearing a t-shirt with a puzzle piece on it, or because you’re raising funds to prevent people like me from existing. I shouldn’t have to look you in the eye, tear up, and utter an inflected “thanks” because it makes you feel good about yourself.

My lack of gratefulness isn’t an ASD symptom. My lack of gratefulness doesn’t mean that I’m not disabled. My lack of gratefulness isn’t impoliteness, smugness, self-centeredness, theory of mindlessness, or some other bad-sounding, mega-autism, amorphous blob thing. I shouldn’t have to wake up feeling grateful every morning, as though gratefulness is some sort of requisite pre-condition for being developmentally disabled.

Would you feel grateful for people who want to “eradicate” people like you?

Would you feel grateful for people who refer to you and your loved ones as an “epidemic,” as a “global public health crisis,” as a “disease” more prevalent than “pediatric AIDS, cancer, and diabetes combined”? Would you feel grateful for people who make a career out of representing you and others like you as creatures of pity, contagion, and fear?

Would you feel grateful for people who ask you, in front of large crowds, how old you were when you were toilet-trained? How you manage to have sex? How you wake up every morning knowing that you are you?

Would you feel grateful for people who call your parents “heroes” because they didn’t put you up for adoption?

Would you feel grateful for people who start up college groups that patronize you? Groups that claim to be your “voice,” yet never even consult you? Groups that devise activities meant “for” you or your “benefit,” yet in their very design exclude you and people like you? Make-up parties, gala balls, sorority cookouts, sensory unfriendly films, massive and crowded walks — boisterous, clamorous, noisy events, events advertised to help you, all the while raising funds to get rid of you?

Would you feel grateful for people who claim you don’t exist, merely because you’re over 21? Because you’re a woman? Because you claim to have a sexual orientation?

Would you feel grateful for people who disprove of, and ardently protest, your decision to have children? Would you feel grateful for people who work to revise custody laws so that people like you can’t single-parent or adopt?

Would you feel grateful for people who call you mysterious, puzzling, special, and heroic — because you’re you? (And, of course, being you isn’t something they’d wish on anyone.)

Would you feel grateful for people who regularly describe your body language, ways of gesturing, and ways of interacting as disturbing, inappropriate, deviant, clinical, and abnormal? Would you feel grateful for people who tell you that the way you think, act, know, and sense are all wrong?

Would you feel grateful for people who segregate you from your classmates, people who claim that who you are as a person will have detrimental effects on your peers’ intellectual development?

Would you feel grateful for people who tell you that you’re an “exception” and therefore nothing you say even matters? Would you feel grateful for people who question your diagnosis simply because you disagree with them?

Would you — should you — feel grateful for people who constantly tell you how ungrateful you are?

Would you feel grateful for these people? Seriously? Truly? Because, if that’s the case, perhaps I can teach you how to flex your ungrateful mind muscles.

**

In other news: I’m back, after a small hiatus. Academic life has been a bit hectic (understatement) these past few months.

December 15, 2008

Dear Melanie:

Thank you for your thoughtful letter in response to my remarks at the Autism Speaks event. I am very glad to know that you are here at Ohio State and that you are helping us to understand the issues. As I continue to learn more about autism, I am struck by its complex nature and fluid scholarship. Please know that I appreciate your input and am mindful of your concerns.

Best wishes for the holiday season.

Sincerely,

E. Gordon Gee
President

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.

12 November 2008

E. Gordon Gee, President
205 Bricker Hall
190 North Oval Mall
The Ohio State University
Columbus, OH 43210

Dear President Gee:

I am writing in regards to statements made at the Autism Speaks walk held on campus this past October 12. My name is Melanie Yergeau, and I am a second-year Ph.D. student in English. My area of focus is disability studies, and I have Asperger’s Syndrome, a form of high-functioning autism.

Ohio State has a small but burgeoning community of autistic students, and many of us were dismayed at your call to “cure” autism during the event on October 12. Though several autistics from our campus group were in attendance at the rally, I was not. As with many others on the autism spectrum, I do not feel that Autism Speaks speaks for autistic individuals. I was, however, saddened by The Lantern’s emphasis on one of your remarks at the rally, during which you claimed, “It [autism] should not exist.” Many—and I would argue most—autistics do not want to be cured. Both high- and low-functioning individuals on the spectrum understand autism as their unique way of perceiving the world (e.g., Amanda Baggs, D.J. Savarese). Autism is a part of who I am: remove the autism and you remove me.

I have waited a month to send this letter because, I admit, I am so very close to this subject. However, a non-autistic Master’s student in social work suggested that you might not realize that autistics do attend Ohio State, that more of us enter the university everyday. And in further contemplating this, I realized that perhaps you have been thrown into this autism debate without realizing that it is, indeed, a debate.

Until very recently, I have felt incredibly welcome at Ohio State—due to the interdisciplinary work of the Disability Studies Program and the Department of English, the Office of Disability Services, and the programs for high-functioning/Asperger’s adults at the Nisonger Center. I would urge you, as you continue in your autism advocacy, to consider what cure means to autistic individuals themselves, to familiarize yourself with organizations that actually appoint autistic individuals to their executive boards (e.g., the Autistic Self-Advocacy Network, or the Global and Regional Asperger Syndrome Partnership). In this regard, I find it important to note that none of the leadership or board positions of Autism Speaks are occupied by autistics: Autism Speaks speaks about autistics rather than for or with autistics.

As I read articles and listen to reports of the rally from my saddened autistic friends, I’ve noticed a trend in representation at Autism Speaks rallies like the one on October 12, 2008: autistics themselves have no voice. Any conversation that determines the fate of autism, I would argue, must consider the opinions, voices (however literally or metaphorically), and experiences of those on the autism spectrum. 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.

I have written this letter to you personally because I would like to think that the president of the university I attend might not refer to autistics as pitiable people in need of cures and able-bodied heroes, but rather as full and contributing members of the university community. 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. It is my hope that you might not only speak as a university president on issues of autism, but as a role model for those within the autistic community.

Sincerely,

Melanie Yergeau
Department of English
421 Denney Hall
164 W. 17th Ave
Columbus, OH 43210
yergeau.1@osu.edu

CC: Brenda Brueggemann, Coordinator of the Disability Studies Program, Department of English

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.

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.

On another page, you write:

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.

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.

Original video:
http://www.youtube.com/watch?v=6GuyTJ…

[cross-posted to the Asperger Syndrome Livejournal Community]

Several autism advocacy organizations have combined their energies and submitted a letter to Savage’s sponsors. I keep mulling over his follow-up show, how he treated his guests, how he decided which experts to pick for the discussion. It all reminded me of how much I loathe politicians and political discourse. I suppose that, being entrenched in the study of feminist rhetorical practices (among other things), it’d be fairly ridiculous for me to coin myself apolitical. I also suppose that apolitical is a sort of paradoxical parlance, especially since refusing politics is, in and of itself, its own political alignment.

I’m entirely gullible, I’ve realized. Or perhaps “indecisive” is the better word. That, and I rely too much on other’s perceptions, reactions, and ideas about social propriety since I tend to lack awareness of what is socially appropriate and acceptable. I’m never quick enough to realize when I should be saying “stupid flaming liberals” or “stupid staunch conservatives.” I’ve also come to realize that saying the wrong phrase in the wrong venue has the potential to result in personal injury. More often than not, I opt to say nothing at all, if only because I can’t process nuance fast enough.

Back to Savage. I’m often hesitant to label Asperger’s as a disability, if only because I don’t see my cognitive perceptions as negative constructs, as something horribly, terribly wrong with me. I prefer to think of Asperger’s as a difference, and some of the accommodations that I need aren’t fixes for my supposedly “wretched medical problems” — just alternative methods for me, as a particular individual, to get by. Moreover, so much of Asperger’s is wrapped up in social matters that I’d be committing a form of self-suicide to merely think that every failed situation is the fault of my “miswired” brain: social issues are social issues, issues wrapped up in a one-size-fits-all, more-often-than-not universally designed (or desired) society, a society obsessed with bell curves and misplaced chitchat about the weather. (Yes, I can see the sun, read the temperature on the bank’s LCD display, and feel the humidity against my skin. But thanks for bringing the current environmental condition to my attention.)

After listening to Savage and his claims that the autism spectrum is a bogus way for drug companies and doctors to reap in extra purse change, I feel as though any attempts I have at rebuttal are compromised. On the one hand, I defend my diagnosis of Asperger’s fervently: based on current scientific evidence, academic and medical communities at large define Asperger’s as high-functioning autism. I am autistic. And defensively so. I have a disability.

On the other hand, I’m not disabled in Savage’s sense of the word — there’s a huge linguistic gap emerging here. Sure, I have “problems,” and sure, I need “accommodations” sometimes, and sure, I have trouble “functioning socially” on many an occasion. I do not, however, need pity, and I am not tragic — neither tragically sad nor tragically cool nor tragically trendy nor tragically misdiagnosed. Tragic and I only fit in the same semantic unit when referring to my fashion sense, which is sadly and grossly lacking. According to Savage, “true autism is devastating.” Devastating for who? Devastating for what? His ratings?

Generally, I assume that when parents learn that their child has autism, they rarely jump for joy. Their lives change considerably, and often they lack the support services that they and their child truly need. But these challenges do not mean that their child is necessarily suffering in perpetuity, that their child is somehow lacking as a human being. Savage’s first guest, Wendy Fournier, president of the National Autism Association, unfortunately bolstered this idea, even though she claimed to be defending the interests of autistic children and their families. We have, she claimed, “a generation of impaired children.” Fournier also believes that vaccinations and heavy metal toxicity are in part responsible for autism, which made her seem all the less credible. Despite my many points of contention with Fournier’s beliefs, I was glad to find a letter she wrote in response to her spot on Savage’s show. When I listened to the show, it often seemed as though she was agreeing with a lot of Savage’s claims concerning overdiagnosis and misdiagnosis. As it turns out, she was placed on MUTE for much of the show, in order for Savage to soliloquize. She further maintains that she disbelieves Savage’s out-of-context/pharma defense, especially since most families do not receive governmental support, cannot sue anybody for causing their child’s autism, and are often placed on years-long waiting lists for necessary support services.

Rhetorically and editorially, this is all very interesting. The more I read about the Savage debacle, the more I realize why pathos is so de-legitimized (and demonized) as a persuasion tool within academic circles.