neurodiversity – autistext

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.

But we just want to help people like you.

In many respects, I think the subject heading says it all.

I hear this a lot lately, primarily from undergraduate students who find autistic 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 autism 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.

ASAN-Central Ohio/Ohio State

I’m slowly starting to get this whole “chapter director” thing into my routine, with hopes that I will pick up where I left off with blogging regularly. The ASAN-Central Ohio group is going well, very well. We rotate between meeting face-to-face and online: our aim is to be as inclusive as possible. Many in our group (including me) tend to get overwhelmed by too much contact and socialization, or just find text to be more preferable for communication.

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." — 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.