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.

15 thoughts on “First-class autistic, second-class citizen”

  1. This so beautiful and so well thought out and so well written. Your words touched my life and my pain and my greatness all at once. Thank you for taking the time to write this and for expressing some of me in ways I could never know how to articulate.

  2. I swear, if a therapist ever called me a ‘phenomenal woman’ or complimented my ‘disability’- I’d fire them on the damn spot.

    I hear you. I hear you.

  3. It seems to me that it took great courage to post this essay–to be so public about the challenges you are experiencing.

    I salute you for that courage.

  4. Wow, powerful words..keep writing. You write well and describe things beautifully – especially for those of us that don’t write well or describe things beautifully. Thanks for being a voice.

  5. Great post!

    “The Autism $peaks undergraduates who, in response to me telling them how hurtful they are, claim that I “cannot silence” their “love.”

    Ick – that kind of love is NOT needed. I hate people who are so condescending and want to help us even though we don’t need their type of help.

    Keep breathing…

  6. If it can reassure you, I posted my contribution a lot later than you!

    Anyway, your post is really great and Important.
    The part about not answering in time to the people who write to you… I live the same thing, maybe differently or for different reasons (It’s mainly because I can’t stand it emotionaly, and I’m affraid I will have written something that would be interpretted wrongly or would sound rude….).
    And the part about Autism speaks, I’m so happy we don’t have it in Switzerland and France,… I just can’t understand… you clearly tell them that Autism Speaks is hurting the very people they pretend to care for, and they think it is an act of love to continue to support it?, to me it looks like the kind of love of an abusive partner…
    I’m sorry for you, I know it would make me so angry… it already does.

  7. Awesome. Says it all. As a highly educated, late labeled parent of kids who are likely also on the Spectrum, and one who has the label, and who has a partner also here….this is so familiar.
    And yes, back handed compliments make me want to hurl. And Autism speaks (sic) all the more so.

  8. Simply a smiling visitor here to share the love (:, btw great design.

    “Everything should be made as simple as possible, but not one bit simpler.” by
    Albert Einstein.

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