#ActuallyAutistic Voices

I could’ve alternatively titled this, “In which Aria attempts to stimulate *allistic empathy for Autistics.”

Chorus — Allistics (non-autistics) who do not listen to Autistic voices are wholly unable to accurately represent Autistic perspectives and yet they are often the ones considered “Autism Experts.”

CW: Some swears for emphasis, brief mention of suicide, some links are to articles discussing anti-Autistic eugenics or suicide rates/causes.

It’s difficult to explain exactly how inaccurate allistic perspectives about us really are. The difference between reading something about autism from someone who lacks autism vs reading something about autism from an Autistic person is astronomical.

If you aren’t listening to Autistic voices (or at the very least listening to people who themselves listen to and cite Autistic voices, although at some point the telephone game comes to mind) regarding autism then your understanding of autism and of how Autistic people experience the world is not going to be accurate.

Period. Full stop.

There is no grey area here, folks.

If you are an allistic who carefully listens to and gives preference to Autistic voices then you might have a chance of portraying us somewhat accurately, but even then you need to tread really fucking carefully.

Chorus — Allistics who do not listen to Autistic voices are wholly unable to accurately represent Autistic perspectives and yet they are often the ones considered “Autism Experts.” 

Let’s consider some alternative scenarios. I want you, **dear allistic reader, to bring to mind something essential about your beliefs or being. What’s your religion? What are your political beliefs? What’s your economic standing? Who ARE you at your very core? What essentials have shaped your life?

Now imagine that the only people in the world who are considered experts about who you are or your beliefs are the people who are most diametrically opposed, outright hostile towards you and/or your beliefs. Maybe these are even people who would be beyond thrilled if people like you or if beliefs like yours were completely eradicated from the earth. Not that they’d say such a thing in so blunt of a way (in your presence, if known), but the sentiment is there nonetheless.

So, if you’re a Christian you could imagine a world where only Atheists are “Christianity Experts” or vice versa, if you’re an Atheist, only Christians are “Atheism Experts.” If you’re liberal (or conservative) then only conservatives (or liberals) are experts about why you hold the political beliefs you do.

Let me be excruciatingly clear about this: These “Experts” are the only ones who get interviews and book deals to write at length about your way of thought and (lack of) reasoning from their perspective. Furthermore, their perspective is the only one that matters to everyone in the world who isn’t in your subgroup.

This means that society’s views of your or your deeply held beliefs are solely based on these “(Hostile Opposing Viewpoint) Expert” opinions. In fact, as soon as you mention that you hold the views you do, you’re dismissed as not being able to contribute anything to the discussion because you’re clearly biased if you hold those views. Untrusted by others to convey your very own process of reasoning as books are being written and speeches are being given about you but not for you.

What would you do in response? How would that make you feel?

Please take a moment and really think about it. Some of you know from experience while to others this is only a thought exercise. Either way it feels kind of shitty, am I right? Even in your imagination?

As for myself, it makes me feel helpless and hopeless.

Interestingly enough (because I read the thesaurus for fun) the first synonym listed under “hopeless” is “desperate.” Think about that for a minute. Then move down the list to helpless, pointless, tragic, useless. Consider then the particularly high suicide rate for Autistics.

Unlike political beliefs, lifestyles, and religious beliefs; Autistic is who we are.

Autism encompasses everything.

Autism is ubiquitous, inescapable (positive or negative), total, and complete in my life.

Autism is part of everything I do, think, and experience. Autism is part of everything that’s me. Being Autistic affects everything.

Autism is always present and it completes me.

If I wasn’t Autistic then I wouldn’t be myself.

Chorus — Allistics (non-autistics) who do not listen to Autistic voices are wholly unable to accurately represent Autistic perspectives and yet they are often the ones considered “Autism Experts.” 

I can, to some degree, walk (metaphorically) outside the bounds of my politics and religion and class. I can learn about other people’s reasoning and try to see where they’re coming from even as I continue to disagree.

But autism is not something with which to disagree. It’s part of our very essence and how our brains work on a fundamental level. It is not a thing to be eradicated or that we can put on or take off. The only people who truly know what it’s like to be Autistic are other Autistic people.

“Hello!” (said with the precise intonation of Hannah Hart from My Drunk Kitchen).

We are here. We are attempting to communicate, but communication takes at least two people. We’re doing our part, now fucking listen to us.

I highly recommend reading “My Story is Mine to Tell” by Amy Sequenzia for more about this topic if you are, indeed, ready to fucking listen.

Chorus (all together now!) — Allistics (non-autistics) who do not listen to Autistic voices are wholly unable to accurately represent Autistic perspectives and yet they are often the ones considered “Autism Experts.” 

Notes:

*As Melanie Yergeau writes in Authoring Autism:

“What is so remarkable about allism is its assumption that allos and autos are binaristic poles, blips on a continuum that speak towards the autistic’s lack of sociality and thereby moral degradation. But what is an other-centeredness if that centeredness cannot center the autistic Other?”

**Yes, I have been reading more classic literature lately. Why do you ask, Gentle Reader?

8 thoughts on “#ActuallyAutistic Voices

  1. Excellent post. As to why listening to those who listen to autistic voices while an improvement on not listening at all is still not really good enough I will give two examples:
    1) In a history lesson at my school we were taught how evidence can become distorted the further you are from the source by means of a variant on the game ‘Chinese Whispers’ – the people sitting in the front row were given a statement to whisper to the person sitting behind them who then had to pass it back until it got to the back of the class. Only the people sitting at the back were permitted to write down what they had been told, and they then had to read it back. Suffice to say that none of the final statements even remotely resembled the original.
    2)It is reckoned that the only message ever to accurately pass along a line of marching soliders was to the effect that “At the next halt each man shall have a glass of beer”.

    Unless you actually listen to autistic voices you have no valid claim to knowledge about Autism.

    Liked by 2 people

    1. Yes! ❤

      In the US that game is called "telephone" 🙂 Playing that game in elementary school had a huge impact on my understanding of gossip and is probably a large part of why I tend not to talk about others behind their backs unless it's to say something that could likely be interpreted as positive.

      Anyhow, that's why the post's chorus stays the same. It's a decent start (I think) to listen to allistics who directly listen to us. Doing that can be a gateway towards better understanding sometimes, but by then it's been "translated" by two different allistic minds and goodness only knows what's happened during that process. Our experiences are often irreparably distorted just when one allistic mind is involved.

      It also has to be active listening with a willingness to learn and clarify and double check understanding too. Listening directly to Autistic voices, even actively, doesn't necessarily mean that allistics can accurately speak about autism!

      Liked by 1 person

  2. The other day a teacher asked me how test questions were biased (against a particular group). Oh man, I had to hold my tongue about how a test on special education was infuriatingly ableist. NT’s aren’t ready to hear that yet.

    Liked by 1 person

    1. Indeed! It’s usually better not to tackle big topics suddenly too. I’ve had some success with gradually planting little ideas that lead towards bigger ones, but still people often aren’t ready or willing to hear it.

      Thank you for reading and commenting ❤

      Like

      1. You’re welcome. And that’s fair – someone pointed out I had earplugs, because I’d been wearing them during class. So I casually mentioned how I was sensitive to sound. Even then, it still surprised her a lot, and I could tell she wasn’t sure if she wanted to know whether I was autistic or not! It would have been too much cognitive dissonance, based on what she knew about me at that point.

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  3. You’re so right! I think I’ve mentioned before (somewhere anyway) the handy German word “bevormunden” – this is when someone presumes to speak for someone else, and it has negative connotations, in that it silences the person for whom someone else speaks. This is all implied in the word, and it literally means that someone puts their mouth in front of someone else’s (“bevor” = in front of, “mund” = mouth). Makes a nice picture in your mind, doesn’t it?
    Also I have recently heard of the “double empathy problem”, which Damian Milton of the National Autistic Society (here in the UK) speaks about. It means that just as autistic people have difficulties knowing how allistic people feel, the reverse is true as well – hence the double problem, because it goes both ways.

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