Autism: Stories, Storytellers, and the Sia Mess

Let the record note that up until the current clusterfuck, I generally thought of Sia as a cool musician whose work I just didn’t feel pulled towards.

(Content Warnings: mentions of ableism, eugenics, and negative stereotypes about autistic people)

Let the record further note that I’m going to refer to my feelings a lot during this piece. Because I have those. Feelings. I, an autistic woman, have feelings. Can you believe that, readers? Can you believe that I’m a person with my own thoughts, aspirations, and feelings, a creature rich in sentiment and not a robotics-coded blank slate for you to project your feelings about mental disorders on?

Yes, I am in fact full of feelings. I am too full of them at present. That’s why I’m risking my burnout recovery to type all this. My prevailing feeling right now? Exhaustion. I’ve known for years that this problem has no chance of going away unless autistic people fight it ourselves.

It’d be easier to keep a stiff upper lip if we hadn’t already been doing so as long as I can remember.

For those not already aware, well… firstly, I’m sorry for forcing you to be aware. Secondly, Sia, an Australian pop star and song writer best known for being a pop star and song writer, and also not autistic, put out a movie called Music which purports to be about autism. In advance of its release, autistic people called attention to red flags: its tropey storyline as hinted in trailers, the fact that a non-autistic actor was hired to play the primary autistic character, the fact that Sia chose to work with fucking Autism speaks–

Allow me a moment to blow air through my lips, as though it might somehow carry my ennui with it. For those who don’t know and can’t be assed to look it up even though it takes, like, two minutes to do so, Autism Speaks is an organization that claims to support autistic people, but has no autistic board members and puts out ads asserting that autistic children will destroy their parents’ marriages.

Cutting to the essentials, the movie’s out. It’s getting thrashed in reviews, but it’s nonetheless the latest of many highly visible stories about autism with no autistic voices deciding its story. We needn’t talk about the movie much from this point forward because, in truth, it’s the latest example of a trend that’s been ongoing for decades.

Though, I will note that its depicting of the potentially-fatal prone restraint position purely for shock-drama is absolutely awful and puts autistic people in further danger. So, there’s that.

Let’s take some paragraphs to chat about the nearest autistic person to this blog, shall we? I’m 28, half way to 29. I am by all definitions a struggling writer. I am isolated by distance and an ongoing pandemic from all the people I most love and care about. And some part of you may have just thought, “Well, it could be worse. You’re autistic, so you don’t like being touched.”

Except that I have at no point written that. Because it’s not true. On the contrary, readers, I love being touched… by people I like. I love hugs… from people I like. You know, like many non-autistic people do?

I’m sorry if my tiredness and ire have bleed through into my tone here. I’m wracking my brain for new things to say on this topic while still exhausted from writing a 480,000+ word fantasy epic in ten months. And most of that was in the final three-month sprint, mind.

Also, if you wanted to read that or the previous book to make me feel less like a victim of the sunk cost fallacy, I’d be very grateful. You may find links to do so here: Local Idiot Provides the Full Set of Links to Her Books (northbornsword.blog)

You may be thinking, “Caerllyn, that’s not how sprinting works.” Ha… tell that to my executive dysfunction, friend! You see, my apparent motivation as a writer comes from a very simple place: once I get invested in a project, it develops what I must call a psychic weight. A hollow yet heavy tingling chill, oily graspers reaching out from my mind’s back. While I try to write well because I love writing, I finish my biggest stories to make those grease-slick talons go away.

You might observe that I’m not using very clinical or psychological-association approved language to describe my disorder’s symptoms. You’d be right. “Psychic weight? Oily graspers?” Who gave the lady on the spectrum the right to talk about her less-pleasant symptoms like she’s a gothic heroine?

I did. Because I’m a fucking person, my own fucking person, and I’ll express my experiences to you in my. Fucking. Way.

Let it be a measure of my frustration that I am using both periods between single words and overblown italics. I was rather hoping the spontaneous lengthy essay might be enough to get the point across, but if it were, I wouldn’t still be writing pieces like this.

Having read the above few paragraphs means you understand me a little better. It doesn’t mean you understand me intimately. A few minutes of reading don’t even come close to the non-stop experience I have of being me, living as me. That should be an idea so basic to human experience that writing it out as I just did constitutes a dire insult to you, but… well, look at the topic for today.

If you’re like many others I’ve spoken with, you’ll assume certain things because those paragraphs were well-written. That is, aside from being a butchery of multiple different prose styles. I’m afraid that’s due to the topic as well as my shifting moods. Anyway, you may assume that I have some writing skill, which is true. (I hope!) I worked for that skill. I’ve honed it over over my entire life’s course. I’ve honed it through classes, conversations, short stories and long, poetry and prose, diatribes and inner monologues.

You may assume that because I’m able to present so much information at once, I’m intelligent. You might be tempted to compliment me on it.

Don’t. There are many, many, many insidious trends surrounding the treatment of autistic people as more human if they can act more conventionally intelligent. That’s its own thicket to cleave through, and I’ve planned another article to deal with my thoughts on it.

A few other non-contradictions of yours truly: sometimes, I like listening to anime idol songs. A fair bit more often than that, I like listening to Sabaton, or Rammstein, or the orchestral works of Howard Shore and John Williams. I love cutesy things, but when I look for a fun show or game, I’m usually angling for explosions. I can perform intelligence because I spent 28 years filing away every mannerism, turn of phrase, and ultimately-meaningless trick I could use to convince others that I’m smart… whatever that means.

That last? I did it because I thought it would make people like me more. No other reason.

I decided to stop doing that a few months ago. I immediately became happier for it. I tell you all this to make the obvious point that autistic people–contrary to pop culture–aren’t monoliths. We’re not all non-verbal people who lash out when we become overstimulated by noise. Nor are all of us emotionally-stunted math whizzes who just need the right mentorship to push entire fields of technology forward.

This last has its origins in the work of Dr. Hans Asperger. Yes, the man whose name was stuck on Aspergers’ Syndrome by neurotypical researchers. Did you know that the good doctor was an avid Nazi collaborator who sent at least two children to be experimented on and, in all likelihood, euthanized? Did you know that his work on autism was heavily invested in the extent to which autistic people could be useful to the social order of the Third Reich?

It’s okay if you didn’t. I didn’t either, until another autistic person mentioned it during a random conversation in a Twitch chat. I did some digging just now to double check before putting it in this article.

All of this, this whole infuriating mess of erasure, of having to repeat the same basic ideas over and over gain… it’s why autistic people and other marginalized folk already know we’re looking at a lost cause when someone who’s already doing the thing says “give my work a chance.”

No? No. No! Fuck you, fuck off, fucking burn to oblivion! Don’t ask us to buy into something when you’re using your power and prestige to speak over us! Stop usurping our stories for mainstream drama and then snidely gaslighting us when we point out the same red flags we’ve seen a hundred times before!

A non-autistic person is no more qualified to tell stories about autism than I as a white woman from the Midwest am to write about the working class black experience in Philadelphia. I don’t know how to break through to industries, be they film, gaming, traditional publishing, or whatever else, whose higher-ups refuse to grasp the very basic concept that it’s not okay to use someone else’s identity as story-fodder without their permission, their input. You get their buy-in first, you don’t demand good faith after appointing yourself to speak for them despite them saying over and over again they’re perfectly able to speak for themselves!

Actually, the fact that marginalized people are expected to make this breakthrough is preposterous. But that’s always been the game, hasn’t it? The people at the top with resources acknowledge that they’ve heard, promise to do better, then the next time they do something heinous they acknowledge that they’ve heard and promise to do better without acknowledging that they already. Promised. Those. Things.

If reality were a piece I hired myself out to edit, I’d have charged the writers double for not even trying to avoid continuity errors.

And here’s the thing, readers, it doesn’t matter whether it could be done “respectfully”. Let’s suppose for a second that I suddenly acquire spectacular psionic powers. Provided someone is willing to let me into their mind, I can experience their life, their memories, their feelings just as I do. I can live someone else’s lived experience. I am the first person in human history who can truly, perfectly understand everything experienced by everyone I meet.

Guess what? I still wouldn’t have the right to tell a single one of their stories. In fact, that would be a rather appalling breach of trust. Intellectual voyeurism on an unprecedented scale. Fetishistic in my shameless use of the things experienced by others to bring me profit.

Or I could’ve just said “peak capitalism,” I suppose.

This brings us to the true crux of the matter. This callous, petty, evil refusal to let marginalized people tell their own stories. This has many impacts. The intended ones: the same cadre of self-sustaining white cis heterosexual folk who have always dominated mainstream storytelling continue to do so, and profit from it.

The unintended, which is not to say any of those in charge care to prevent said fallout: multitudes of exciting new stories are wiped from existence before they even get to start. Those whose creators still bring them to fruition by sheer willpower may never reach a fraction of the audience they deserve.

Another, equally insidious: those marginalized stories which are allowed some broad visibility will be those most palatable to the white, cis, heterosexual hierarchy in command. By definition, these will either be the marginalized stories that most closely align with that hierarchy’s own experiences–so, the least marginalized and thus least in need of further rep–or those which best confirm its existing biases.

I won’t try to comment about the racial and non-white cultural areas of that question because, y’know, I’m unqualified–except to make the broad point that this does not mean the marginalized storytellers who manage to get in good with the hierarchy didn’t deserve the success. They always do!

That’s the cruelest part of the game: there are so many voices clamoring for a chance to sing to the world, each of them just as deserving as the next. With masses to pick from, the hierarchy will always be able to cherry-pick someone who totally deserves the chance, but just so happens to be writing work that won’t rock the boat too much.

Bringing it back to autism in particular because that’s my lived experience and I can write about it with authority: the problem I and many other autistic people face is not that no autistic representation exists, though it’s still as tooth-grindingly scarce as for any other marginalized community. The problem is that where that rep exists, even if it’s good rep, it will continue to depict the kinds of autistic people most “relatable” to that white, cis, heterosexual, neurotypical hierarchy.

Nice paradox, isn’t it? Our stories about being different have to be the same. Or, close enough to.

I am one autistic woman. I can be fantastically eloquent. I can also throw a temper tantrum and bite my kneecap because I’m struggling to clear my head enough to continue sketching a character… having just finished an intense workout and showered. I did not in fact make that up. That was yesterday afternoon.

This also ties in with being a trans woman with severe body dysphoria, hence screaming “I HATE YOU” at said body while biting it. Or… making it bite itself… ahem. The question of multiple, intersecting marginalized identities its own field of study. It is, in fact, called intersectionality! I’m sure I’ll write about that in the future too–as far as autism, trans identity, and pansexuality are concerned.

Anyway, let us return to our previous tangent about meltdowns and knee-munching, so that we may in time return to the main topic.

So how’d I recover from that fit? How could I, a hopeless autistic person, ever deal with my unlivable symptoms? Did I have to be held down and sedated, perhaps, even hauled off to a psychiatric hospital?

Well, no. Biting my knee aside, I tried to push too hard when tired and got frustrated over lack of results. That’s not just an autism spectrum thing, though it does tend to create a feedback loop with other parts of the disorder. But getting pissed off at a sense of helplessness, of falling behind… those are the shared experiences of every adult forced to work too hard in a capitalist society.

So I forced myself to close CSP, listen to a rendition of an Irish folk song–“The Star of the County Down”–and in a few minutes I was just plain sullen. Half an hour later the post-rage exhaustion passed and my head cleared enough that I was able to do some sketching after all.

Now, yes, the volume of my breakdown was, shall we say, above average. But I’m guessing that no matter who you are, you’re reading this and thinking, “Hey, yeah, I’ve been there! I’ve also been trapped between needing to recover from burnout and knowing that I need to get back to work!” It’d be fair to question how this corresponds with my earlier chatter about the uniqueness of marginalized stories.

I’m reaching the end of my energy for this piece, so I’m going to leave a lot unhandled for now. But hey, as I said at the start, we’ve been having this conversation for decades. Much as I’d love to believe otherwise, one essay from me will not change every heart. For the moment–the core irony of being autistic and telling stories about autism is that part of our unique marginalized experience is the tendency, in mainstream storytelling, to treat us as so different that the chasm can never be bridged.

If an autistic fit can be written off as something nigh eldritch, a spontaneous sundering rush of fury and energy with no cause nor salve, then no neurotypical person could possibly be expected to deal with it. You don’t help a gamma ray burst sort through its trauma, you just try to stay out of its path. “Sometimes North just freaks out and bites herself” doesn’t create any obligation if it’s true.

It’s not.

I’ve never had a single tantrum “just because”. My reasons haven’t always been mature because, hey, did you know autistic people are also children when they are born, and also take time to grow? Still, I’ve always had reasons. For most of you I know that’s self-evident, and I apologize for any and all times during this post that I’ve told you something you already understand.

The thing is, for a neurotypical person who’s been conditioned by decades of media that every autistic person they meet is a sort of idiot savant/mystic/star child with the insight of childish stupidity… ugh, felt my gorge rise just writing that… for that person, it’s quite a bitter pill to swallow that autistic folk don’t just exist to further neurotypical character arcs. Our traumas don’t exist to offer you insight. They’re, um, traumas. They’re deeply harmful experiences that need to be stopped, and we need help to heal from.

Of course that’s always been true. But for the neurotypical person who hasn’t already accepted these truths, it feels as though I just created a new reality where they actually have to do a bunch of work instead of claiming credit for work they’ll never do. Caring about autistic people takes effort now? I have to listen to them instead of monologuing to news cameras about what a good, hardworking parent I am for tolerating my insane child’s completely-unexplainable outbursts? I have to be a good, hardworking parent instead of putting in a mediocre fa├žade and telling everyone that I’m the real deal until I believe my own bullshit?

Bleh. No thanks. Back to another film where all autistic people will just be this way forever. It’s impossible to help them, and no one can be at fault for failing to do the impossible.

There’s the sickliest part. I fear that deep down, many of those who unironically like the narrative I just described are aware, if only a little, that it’s a lie. But if they ever consciously admit that… can you even imagine the shame, the self-loathing, the sheer gut-gnawing guilt, that would have to come from admitting that all this time they’ve just been looking for an excuse to write other human beings off as beyond saving?

I might even feel sorry for them… if their desire to phase out of that reality didn’t cause real harm, often fatal harm, to myself and other autistic people. Our lives matter less than their comfort.

I suppose that’s the note I wish to close on. Popular stories about autism trend overwhelmingly towards comforting neurotypical people who feel discomfited by witnessing an autistic person. They’ll keep doing this as long as neurotypical people are allowed to take the lead in telling stories about autistic people.

This is not because a neurotypical person cannot empathize with and learn to tell good stories about autistic people. However, if a society goes out of its way to look for neurotypical storytellers to do so when there are plenty of qualified autistic writers, it must do so from a need to erase autistic people from control over their own stories. We must confront that rot at its roots before any other change can come.

Look, I’ve got plenty of personal flaws, but I do write well. I don’t need a neurotypical person to speak for me, I just need them to hand me the fucking microphone. Or, erm, to retweet my Twitter rants instead of QRTing with their own thoughts, as the case may be.

So hey, if you’re a neurotypical person reading this and you’re wondering, “How can I be a better ally?” let’s start with that. Now, remember what we keep saying: if you know one autistic person, you know one autistic person. The things I ask allies to do for me may not be what other autistic people want for themselves.

So, er, again… human interaction 101. Different people have different needs. Listen to each specific person and do, for them, the specific things they ask, when they ask for them. The only true difference here is that neurotypical people, who do this for each other all the time, are used to bypassing it when dealing with autistic people.

So, here’s what I am asking for myself specifically: I don’t need you to speak for me. I don’t want you to. In fact, one of my biggest frustrations as a creator and especially as a writer has been that there are more people who will monologue to their friends about how good a writer I am than there are people who will just retweet and buy my damn books!

Instead of going on a tiny personal crusade because deep down you want to prove you’re a hero–no judgment, I’ve done it too–just share this post around. I am not asking neurotypical people to have a take here! I am not asking you to be able to speak to all the issues, or to prove you understand. Don’t be a Season 1 Natsuki Subaru, hm?

(Author’s Note: for those not already familiar, this is a reference to the anime Re:Zero. I recommend looking into it if you like anime/cartoons in general, and not if you do not.)

Don’t try to prove to me that you care and you’re super useful by choosing the actions that make you feel important over the actions I say I need, then claim that you did it all for me–right now I’m trying to tell my story, so it’s my voice you should boost anyway. Isn’t that great? You can be a better ally by doing less work!

You will have to overcome your social anxiety. I know that can be so much tougher than it sounds, but I believe in you! You, too, can become a constant storm of shares, retweets, and the like! Or hey, better yet, share my fantasy and scifi writing around. Essays like this are labors of solidarity. I’m writing this piece because I feel that I have to, but I’m exploring these same themes in my fiction work.

I am, explicitly, an SF/F writer, not a non-fiction writer. I love writing fantasy. And believe it or not, I hate hoarding ideas. I want to become successful enough that I can share all my best to help others grow instead of sitting on the pile, terrified that if I’m not careful it’ll all be stolen and I’ll be left alone without a smidge of credit for all my effort.

I linked my books back near the start. Share those around and buy a copy or two. Help me grow my following so I can commit to that ground-up rewrite and finally create the series I always wanted to. That’ll have even more eldritch duels, necromancy, and demonic sex-antics than its current incarnation, which I’m hoping should help keep everyone interested enough to benefit from the heavier themes. You know that whole thing where marginalized creators often get pigeonholed into being relevant only through talking about the ways they’re marginalized? How about you help me avoid that.

Anyway, we’ve passed 3900 words, which is exactly 3.9x what I hoped to spend on this piece. I’m going to wrap it up for today, kick back for an hour, and then go back to sketching the linework for a nude drow musclegirl because I can’t expect God to do all the work.

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