My silence is, in fact, a compliment. It means that I am being my natural self. It means that I am comfortable around you, that I trust you enough to engage my way of knowing, my way of speaking and interacting.

When I dilute my silences with words — your words, the out-of-the-mouth and off-the-cuff kind — I often do so out of fear. Fear that my rhetorical commonplaces — the commonplaces that lie on my hands, sprint in my eyes, or sit nestled in empty sounds — will bring you shame. Fear that my ways of communicating will be branded as pathology, as aberrant, as not being communication at all. Fear that I will lose my job. Fear that I will lose your friendship, guidance, or interest in me. Fear that I’ll be institutionalized. Fear that I will be infantilized. Fear that I’ll be seen as less than human.

This isn’t to say that my use of your language is always a product of fear. There are times when I genuinely want to use it, understand it, and learn about and from it. I understand that speaking is how you prefer to communicate. I understand that speaking is how you best learn and interact. I understand that you take great joy in speaking and listening to others speak. And I do, I really do want to share in that joy.

But the burden can’t always rest on me. I have a language too, one that I take joy in, one that I want to share. And when you deny me that — when you identify my silence as a personality flaw, a detriment, a symptom, a form of selfishness, a matter in need of behavioral therapy or “scripting” lessons — when you do these things, you hurt me. You hurt me deeply. You deny me that which I need in order to find my way through this confusing, oppressive, neurotypical world.

My silence isn’t your silence. My silence is rich and meaningful. My silence is reflection, meditation, and processing. My silence is trust and comfort. My silence is a sensory carnival. My silence is brimming with the things and people around me — and only in that silence can I really know them, appreciate them, “speak” to them, and learn from them.

Speaking is an unnatural process for me. When socializing through speech, I will almost always be awkward, and I am OK with that awkwardness. In fact, I am learning to embrace that awkwardness, learning to reclaim and redefine that awkwardness. I am sorry you’re not OK with that, sorry that you feel I need to practice, or take anti-psychotics, or frequent the university hospital’s psych ward. I’m sorry that you won’t appreciate me for who I am and how I operate in the world. I’m sorry that I can no longer consider you an ally, confidante, or friend.

I'm not a checkbox in some symptom cluster. I'm a freaking human being.

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.

Right now, our group has two big plans. The first is event-planning for Autistic Pride Day, which falls on June 18. The whole of April is dedicated to autism awareness, but the awareness preached in April tends to be of the medical sort, the sort that hyperfocuses on cure and prevention and alarmism. Our plans for the event have not been solidified yet, but we’re aiming for something that celebrates autistic culture. We’d been tossing the idea of holding an autie picnic in some prominent locale (e.g., the capitol lawn) and printing up a bunch of pamphlets that describe autism positively for passersby. We also have artists, writers, and possibly musicians in our group, and we’ve thought about asking those individuals to showcase their work, if they feel comfortable. We’ve decided to combine this picnic idea with another: we’re hoping to meet with a few state reps on the morning of June 17 and talk to them about ASAN, neurodiversity, and Autistic Pride. After that, then we’ll segue into the picnic and fun stuff.

The second item we’re planning is going to require a good deal of elbow grease: we want to visibly protest the Autism Speaks walk in Columbus on October 11. For a number of reasons, Autism Speaks doesn’t coalesce with neurodiversity activism. First of all, none of the Autism Speaks leadership positions are occupied by autistic people. Moreover, Autism Speaks frequently employs alarmist rhetorics in their depiction of the spectrum, e.g., comparing autism to lightning-strike stats, pediatric cancer, and AIDS. According to their organization, inviduals on the spectrum are inherently suffering and pitiable people who present an excessive burden to families and society. Autism Speaks’ main goal involves cure and prevention, and instead of directing their funding to support autistic individuals in their everyday lives, the group focuses on eradicating autism (or eradicating autistic people).

Our goal is for this protest to be peaceful: we hope to gather a large number of people and stand on the sidelines with large posters and signs. We also plan to write letters to the local Autism Speaks chapters, as well as their sponsors, before the event takes place. In our latest ASAN meeting, we discussed the difference between being “strong” and “militant” in our goals — strong having the better connotation. Given the events happening on the Ohio State campus recently, many of us are incredibly frustrated with Autism Speaks. Those of us who have written to them have been ignored or brushed off, and any disagreement we have with their methods or end goals is chalked up to us being so-called black-and-white or unempathetic or literal-minded disabled people who don’t know how bad we (or they, the poor families) have it.

A bit hard to read because of the wind, but the banner
is hanging from a sorority house. It has a puzzle piece
and Autism Speaks written on it, and is hanging for a
fundraiser called “flippin fuzzies.”

How are autistic people supposed to react when we see people wearing t-shirts like this? “Grateful” that people think of us as puzzles, as missing a few cognitive pieces? In what way is that not insulting?

How are we supposed to act when campus Greek life displays banners like the one above, or gives interviews like this one? Or when local grocery stores claim that a pseudo-eugenics organization aligns with their core values? I shudder at the thought that my peers, professors, and students might think of me and other autistic people as diseased, devastating, and lacking in “proper” brain function — everything a matter of deficit, deficit, deficit.

…hence, the protest.

One of the things I love about the newly vamped change.org is its actions feature: there’s a growing community of neurodiversity advocates there, mostly due to the blogging efforts of Kristina Chew and Dora Raymaker, and the Autistic Self-Advocacy Network has been able to create form letters/petitions via the change.org interface. In short, it is now incredibly easy to send protest letters to various organizations and companies. ASAN provides you with a stock letter for the controversy du jour, which you can edit, and ASAN sends the letter as an email to the desired parties. It’s pretty cool. You can view the Lindt action here.

Back to Lindt…

Apparently, their support of of Autism Speaks has been going on for a while now. And, I’ve just learned that Toys R Us has additionally been partnering with Autism Speaks. Starbucks began printing blurbs about Autism Speaks on its coffee cups two years ago, and Hulu receives some of its sponsorship from Autism Speaks.The list of Autism Speaks’ BFFs seems never-ending.

Autism Speaks has a tremendous amount of corporate and media support. It’s little wonder that the autism controversy isn’t even rendered as a controversy in popular discourse. When I try to explain the concept of neurodiversity, for instance, to someone new to the autism fold, a typical remark resembles the following: “That’s stupid. Why wouldn’t someone want a cure?”

Autism Speaks’ toehold on autism discourse in popular media de-de-de-controversializes autism, de-de-de-ideologizes autism, re-re-re-pathologizes autism, and re-re-re-silences autistics. (And yes, I tripled the prefixes on purpose — something, anything, to effectively represent my emphatic tone here.)

Additionally, because of cure-minded groups like Autism Speaks (they aren’t the only one with media clout), neurodiversity comes across as some sort of fringe group of fame-seekers. Last year’s New York Magazine feature on the movement sported the following byline: “A new wave of activists wants to celebrate atypical brain function as a positive identity, not a disability. Opponents call them dangerously deluded [emphasis mine].” Moreover, a fairly recent Good Morning America segment on neurodiversity — which featured wonderful spots with Ari Ne’eman and Kristina Chew — ended with an incredulous Diane Sawyer showcasing both her doubt and her journalistic ethos.

I think the frustrating thing here is that, to the public masses, neurodiversity seems so new, so “out there,” so contained and so rare. Neurodiverse advocates are either painted as too disabled or too autistic to understand how badly they’re “suffering,” or as too high-functioning to know what “real” autism is. It’s a frustrating catch-22, to cite the novel that my book club recently finished.

For those interested, my webtext is available here:
http://www.bgsu.edu/cconline/dmac/index.html

I should also note that there are several places in this webtext where I attempt to be sardonic, or sarcastic even. Part of this is me playing with representations of the spectrum. My own perspective about autism is a very neurodiverse one, so if something in this webtext seems contrary to neurodiversity, or seems inflammatory, then it’s probably me attempting to be sarcastic. I’m hoping the points where I’m not being literal are clear in their intent, especially since so many people reviewed this and helped me with the revisions. 

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 aspie 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 Asperger's 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.

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.