First-class autistic, second-class citizen

I am running late. Again.

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.

A protester holds a sign that reads PROMOTE SELF-ADVOCACY
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.

Socializing through silence

I wish you wouldn’t interpret my silence as silence.

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.

A photo of me holding a sign that reads LISTEN TO ME, I HAVE AUTISM.
I’m not a checkbox in some symptom cluster. I’m a freaking human being.

Protesting Autism Speaks, 10/9 @ Ohio State

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:

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!

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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)