But lately, I am resisting passing. When I teach, I talk through and about my stims. I fire my rubber bands across the room, trip over classroom furniture, flap and wrench my fingers, rock back and forth as my elbows grate against the whiteboard. This is me, I say. My body is narrating.

When I first read about The Loud Hands Project, I flashbacked to kindergarten and flashforwarded to my future as a teacher. I imagine a world where my hands roam free, where stimming is simply a part of being — and I created the video below as part of that imagining. I hesitate to call this video a poem (because a poet I ain’t). So, I’ll simply call it a stimfest. A captioned stimfest.

From the Loud Hands website:

The Loud Hands Project is a transmedia publishing and creative effort by the Autistic Self Advocacy Network, spearheaded by Julia Bascom. Currently, we are raising money towards the creation of our first and foundational anthology (Loud Hands: Autistic People, Speaking) and accompanying website.

Loud Hands: Autistic People, Speaking features submissions by Autistic authors speaking about neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively by the community as having loud hands)

I’m excited about this project, to say the least, and encourage you to read through the project’s website [preferably while hand-flapping]! Stim hard, people. Let your bodies be lively.

The emails I compose are all the same. I’m sorry for my delay in responding to you, I write. And then I stare at my screen, sometimes for two hours, sometimes for two months, and try to remember my excuse. Why am I late? Which metaphorical crowbar wrenched its way into my mental machinery this time?

Lately, I conceive of my days as a series of perseverative loops. The new job, the new home, the new and utterly non-autistic community. I cannot pry myself from anything. One egg, one piece of toast, and one butter cookie for every single meal. I read each Facebook status update 47 times before and after posting. “Let’s do something together,” a new friend or a new colleague or a new frenemy will write. And then nine days pass, or 39 days pass, and I’m still working on a two-line email response. Perseverative loop. Lather, rinse, repeat.

I can’t remember the last time I ate a vegetable. I’m not distressed by this — I’m more distressed by other people’s distress. Their jokes about anorexia throttle me into monologue mode, and I launch into impassioned rants — sometimes about disability studies, sometimes about feminism, and sometimes about how much I wish the F-word were a tangible object that I could lob at ableist, self-important hacks.

Oh, F-word. Materialize for me now. I repeat this line to myself. 47 times. 47 times.

The days are a blur. I cry most nights, wishing I were somewhere back in time, a time when I could wrench my fingers, rock my body, and speak without inflection. In a bookstore. In public. With half a dozen others who wrench their fingers, rock their bodies, and speak without inflection. I miss this autistic chorus.

This.

But I am here, not there. Autistics Speaking Day has come and gone, and here I am — still writing, still perseverating, still ensconced in my words and my tears and my veggie-less existence. My sense and use of time isn’t on par with the mythical norm. I am learning, or trying to learn, to take comfort in my lateness, to interpret my lateness as function without the dys, as function minus the -tio and n‘s. Fuc(k) function.

There are shitty moments on repeat in my head. The colleague who berates me for asking her to repeat instructions. The potential therapist who calls me a “phenomenal woman” for having the “courage” to lead a disabled existence. The internet trolls, plural, who variously tell me that I’m not autistic, that I’m ungrateful, that I lack the capacity to have capacity. The Autism $peaks undergraduates who, in response to me telling them how hurtful they are, claim that I “cannot silence” their “love.”

Perseverative loops, cumulative loops.

What I consider accommodating, they consider unreasonable.

What I consider insulting, they consider complimentary.

What I consider hate, they consider love.

What I consider feeling and compassion and emotion and just plain being in the world, they consider pathology and blight and madness and something just plain worthy of extermination.

And I wake up in the morning, ride the bus, step into a classroom, feign attention with my flat mousy voice and unruly hands. There are lists to make, silences to repeat, latenesses to embrace, F-words to embody. I take this as a lesson in breathing.

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.

Yet, I’ve used aspie here anyway. I’ll explain why.

I prefer to be called autistic, for a variety of reasons. I don’t see Asperger’s as “separate” from autism, nor do I see Asperger’s as being the next and better form of human evolution (ugh), nor do I think that people with Asperger’s DXes are superior/more intelligent/cooler than those with other autism labels (more ugh). As I’ve written previously, these diagnostic labels are, in a large way, socially constructed entities that reflect more on what we deem as normative than what we deem as autistic. How we conceive of functioning labels, for instance, is a product of social and cultural power, where “functioning” really means “the ability to act and think like all us normal and therefore superior people.” In a large way, distinguishing oneself as aspie can institute this sort of cultural power — a way to call attention to one’s position on the functioning food chain.

But I still use aspie here, despite the potential for misinterpretation, despite the potential for others to assume that I’m some sort of shiny, self-important autistic. And here’s why: I’ve been given a label in the name of pathology, and I want to reclaim that label in the name of disability studies/neurodiversity/autistic culture.

When I use aspie — and I daresay when certain other autistic people use aspie or autie — it’s not an act meant to exclude others, nor is it an act meant to create hierarchy among autistic individuals. In fact, I use aspie and autie almost interchangeably — because I personally don’t  see a difference between the two, at least not in a let’s-take-back-the-language-used-to-describe-us-and-oppress-us sense. Sort of what Simi Linton writes about.

To give further background: someone called me an aspie rhetor before I called myself an aspie rhetor. And I take issue with both words: First, the person who called me an aspie wasn’t someone who knew (or cared) much about autistic culture. And second, I take issue with being called only a rhetor — I’m also a rhetorician, dagnabbit.

The difference? Rhetors are people who make arguments or create messages (e.g., bloggers). Rhetoricians are people who study what rhetors do (e.g., study bloggers and their blogs and the people who read their blogs). Apparently, per this person, by sheer fact that I’m a so-called “aspie” — and am therefore disordered — I don’t have the ability to study the moves that other aspie rhetors make.

In fact, per this person, all of the autistic bloggers on the Autism Hub are aspie rhetors (even if they’re not, um, aspies): by sheer fact that they’re autistic, they’re incapable of being rhetoricians.

So, insert the mindblindness and Theory of Mind mantras here. I can’t escape my poor little mind prison, so I’ll always be the studied rather than the studier. Because goodness knows that autistic people are arhetorical beings who lack such audience awareness that they don’t have the capability of understanding what rhetoric is.

So, let me make something clear: I’m an autistic rhetorician, not an aspie rhetor. And Hub bloggers are rhetoricians, not just rhetors. But with what I like to think of as a final blow to this individual, I’ve called myself (or my blog) aspie rhetor. And why not? I’m an English major. I can spend the next 10 years analyzing all the crap associated with that term. And if ableist individuals are going to demand that I’m aspie (as opposed to the so-called “horribly damaged” autistic people) and that I’m a rhetor (as opposed to those people who actually know what they’re doing when they write), then I might as well make these terms my own, complicate what these terms mean, use them in ways they weren’t intended.

Moreover, because I like to think of myself as both a rhetor and a rhetorician, I’d like to think that I have some insight into making my own blogging space a rhetorically effective and accessible blogging space. For instance, aspie rhetor is not only easier to spell (e.g., aspierhetor.com), but it’s also easier (for me) to pronounce than autistic rhetorician.

Maybe someday — perhaps when the DSM-V arrives and does away with the Asperger’s stuff — I’ll remake my blog, or have two URLs leading to the same place: aspie rhetor and autistic rhetorician. But I don’t feel apologetic about referring to this space with the word aspie. I recognize that in many contexts, it certainly does create a dichotomy amongst autistic people, just like functioning labels do. But a rather large part of aspie and autie involves taking back the words that others come to know us by. And in that sense, I don’t see the dichotomy, and I don’t see the hierarchy.

Maybe I should put this stuff on my About page.

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.

Among other not-so-pleasant things, autism is frequently depicted as the newest “trend diagnosis,” especially within online circles. We only need look to Dennis Leary’s or Michael Savage’s tirades this past summer to get an idea of the over-the-top vitriol surrounding this assessment. Moreover, such comments about overdiagnosis appear despite autism specialists proclaiming that autism is underdiagnosed.

Autistic writers such as Thomas McKean have argued that there is an “ethos” problem within the autistic community, that adult-diagnosed or self-diagnosed individuals have little to no place in the discussions that surround autism and autistics. The folks at autistics.org penned an excellent follow-up to McKean’s assertions. Of course, in addition to the overdiagnosis brouhaha, we have the high-functioning/low-functioning division, that clever binary employed as a mechanism to diminish the ethos of those autistics who do self-advocate.

I want to explore this diagnosis issue more, however, because I think it’s an issue that really needs to be addressed. Many so-called debates in autism discourse seem to prevent autistics from self-advocating, from entering into anything resembling an autistic culture — anything to further someone else’s agenda.

My own experiences with “diagnosis” and “assessment” are mixed. I first learned that I “likely” had Asperger’s when I was a teenager, around the time I dropped out of high school. Of course, the individuals providing such an assessment were not autism specialists, nor could they document my condition “officially.” Something similar happened in college — I sought out counseling at a couple junctures, and was again told that I had Asperger’s… unofficially. In fact, I didn’t become an “official” autistic (ugh) until I began working on my MA degree. What to make of this?

I should note that my age(s) of “diagnosis,” while somewhat older, are not that uncommon (especially for women), and thus I think I’m generally afforded a fairly strong ethos when I participate in autistic communities. But, nonetheless, some people only latch onto the official designation, which occurred when I was of college age. (For example, one autistic person I know in real life, when he learned of my age at official diagnosis, commented that I must be “extremely mild.” I resisted the urge to punch him in the face.)

Contrary to the beliefs of the interwebz, I didn’t wake up one day and decide to be autistic. I was passively labeled as autistic before I ever agentively labeled myself as autistic. I suppose I could have (or my parents could have) more vigorously pursued officialness when I was a child. But, for personal reasons, we didn’t go that route — at least not at that point in my life. However, there was something clearly different about me from birth. (Yes. That early.) Nobody recognized that something as Asperger’s until I was much older — partly because Asperger’s itself wasn’t even an official diagnosis until I was a fifth grader, partly because Asperger’s wasn’t widely and publicly recognized and diagnosed until I was nearly college-aged, and partly because I’m of the female sort, and ASD has largely been seen as a “boy thing.”

This is all very personal, personal in a way I don’t quite feel comfortable writing about. However, I write this because I’d like to think that, eventually, both the autistic community and the autism community could move away from this obsession with age and diagnosis, as if somehow a 40-year-old diagnosee is either more “helpless” because she “lacked early intervention” or is less autistic because “nobody noticed it sooner.” Do we really, truly believe this nonsense?

Obviously, diagnosis can and does serve a purpose. It allows, legally, for access and accommodation. For many, diagnosis is validating and/or leads to self-understanding. Diagnosis can explain a lot. But there are some things that diagnosis just plain isn’t and just plain shouldn’t be. (For example, why must someone possess a legally binding document, a document that probably required oodles of out-of-pocket money, in order to receive an accommodation? In the words of my interwebz friends, WTF?)

I think we, as a community of autistics, need to recognize the structures embedded in diagnosis first and foremost: whether you’re examined by fourteen neurologists at age three or one clinical psychologist at age fifty-three, you can still call yourself an autistic and self-advocate with that ethos. Accordingly, even if you don’t have an official diagnosis, you should still be able to contribute to the larger autistic community, to be a part of this community.

Why are autistics making social pariahs out of other autistics? Are we not already pariahed enough on a daily basis? Autistics are individuals. Autistics are diverse. Autistics come from different places. Get over your own shiny brand of autism and get used to it.

My own reaction upon first learning about my ASD was that of fear and shame, mainly because fear and shame were the emotions I’d been programmed into feeling about ASD. I’d never come across anything remotely positive in association with autism (and these were the days before I’d become truly acquainted with the internet). I welcomed unofficialness because I didn’t desire stigma, because I didn’t comprehend the fullness and richness of ASD, because I didn’t come to ASD from a lens of difference or diversity — I only understood ASD as depressingly embedded in deficit. It took a long while for me to reshape my views of ASD and myself. Although self-diagnosis generally refers to those individuals who voraciously read and learn everything they can about ASD and then recognize themselves in the label, I tend to see self-diagnosis more along the lines of self-recognition or self-identification.

I suppose this post is the result of a pent-up reaction to snarky comments I’ve seen in autistic web forums and listservs, snarky comments made about others. But I’ve also been triggered into annoyance mode by in-person questions. Lately, I’ve been greeted with the when were you diagnosed? question more often than usual, it seems.

I don’t really know how to answer that question. In a lot of ways, it seems invasive: why the hell does it matter? It’s not as if the autism latched to my brain one day in grade 9, and, as a result, I’m not as malignantly autistic as the kid diagnosed at age two. In a lot of ways, I feel as if this question is wrapped in a medical model, or a disease model, of autism and disability. To me, it suggests the idea of a severity continuum, as if teens and adults shouldn’t be diagnosed with autism by the sheer fact that they’re adults, as if only the little helpless children matter, as if only kids are “severe” and in need of “services.”

Moreover, anyone who claims to be autistic and not suffering has to be a joke, right? Why not find every means possible to discredit them — age of diagnosis, self-diagnosis, adulthood, gender, sexuality (gasp! autistic and sexual in the same sentence?), IQ, so-called “functioning” level, speaking style, writing style, stim style, income bracket, and on and on… </sarcasm>

Amanda Baggs has felt the need to post her official documentation online, which, I’m guessing, is due to some of the horrible, doubting comments she’s received on her blog. (One of the sessions I attended at CCCC, on autism and rhetoric, commented on this. The presentation was made by April Mann.)  It’s as if people believe that personhood entirely precludes autism — forget the age or officialness debates. How long do autistics need to keep defending themselves? How long until our ethos is a legitimate one? Highly rhetorical questions, I know.

But back to that dreaded question: when were you diagnosed? I struggle with how to answer this concisely. I struggle with whether I should answer it. I struggle with writing this blog post. I feel as though I need to regurgitate the official diagnosis as my answer, even though I knew several years beforehand. But then there’s also the age at which I self-identified, the age at which I embraced my autism, which is a different matter entirely to most who ask the question — but to me, that moment is the important one, more important than the moments that involved paperwork and stacking cubes.

I suppose, as an autistic writer, concision has never really been my strong point?