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The Autism Spectrum According to Autistic People

Autism neurodiversity

An Autistic Dancer’s Reaction to Sia’s Film

I know there are hundreds of outraged articles and blogs about Sia, but I thought as an Autistic dancer, I wanted to give my take.

Alright, ‘dancer’ might be pushing it. Before lockdown, I went to weekly– sometimes twice weekly– ballet lessons for about 18 months. This grew out of my obsession with dance– from classical ballet right upto avant-garde modern pieces.

I love it — sometimes pushing my bank balance well into the red in order to buy tickets for a production of Giselle or driving miles on my own through storms into Wales to see the Rambert.

There is something about dance which give me a pure, unadulterated, unnameable joy. There are no words in dance to misunderstand. The emotions, like mine, are huge and are writ large.

When someone is angry, they telegraph this with their whole body. When someone is in love, they cover the whole stage with beautiful bounding leaps. Mammoth miasmas of joy are welcomed in the world dance, and briefly the audience, inhabits.

Dance is also two middle fingers up to any hetero-normative gender expectations that I would spend my life drinking warm cans of weak beer and scratching myself at the football games.

As a middle-aged, coffee-based life form AMAB, it took me a long time to work up the courage to go through the door of the ballet studio, and repeated phone calls to the tutor asking for reassurance it wouldn’t just be me stood in the middle of a group of bemused teenage girls.

Once, I got as far as the door before abandoning my mission; but finally, a fortnight later, I went in.

I found it was fine– better than fine, it was great. Adults of all ages, genders, shapes, and sizes stood around the studio, and everyone was friendly and non-judgemental.

Also, to my amazement, I found I could actually do each of the movements. Stood at the barre, I could plié, demi-plié, arabesque, and even do a type of en pointe, balancing upon the balls of my feet with my hands fully extended in a sort of arc above my head.

I was exhilarated! Maybe this was my calling? Maybe I would achieve worldwide fame as a middle age prodigy?

But then– inevitably, as things go– disaster struck. It turned out, that was just the warm up.
Now we came away from the barre and the tutor started putting those movements into short pieces set to music, and I discovered a fairly fundamental problem.

The tutor would string together maybe six of the movements we had just been practicing, and then split us into groups of ten. We would take turns to perform while the other forty students watched. To my horror, I realised I could never remember the movements.

No matter how many times the tutor showed us, no matter how many times I blundered through the piece watching the other students, I just could not pick it up. I couldn’t even remember which foot to start on.

If I could, I would lurk at the back of the studio desperately watching the tutor through the crowd, trying my best to memorise the steps– but it just would not stick.

Nevertheless, I decided to keep going. I decided to shrug and accept this limitation with humour rather than frustration.

Then, maybe a year or two later, I was diagnosed as Autistic and nosing through a book on autism. I found a line that seemed to explain the challenge I had encountered. It said that autistic people had a different memory from NT’s– and in particular what it called a “working memory” (the part that would remember physical instructions) — often was lacking (Their words, not mine).

Then, about a month ago, my Twitter timeline began to fill up with mentions of someone I’d never heard of called Sia casting an NT actor to play an autistic role in an upcoming film. I’m not going to bother repeating the sorry saga and Sia’s jaw-dropping responses, as you will, I’m sure, all be well-aware of them.

What I do want to address is what Sia said about casting autistic dancers. According to an article on Indie Wire:

Sia said it would’ve been impossible to cast an actor who matched the character’s “level of functioning” because the role demands a highly skilled dancer to pull off elaborate musical sequences where the title character gets lost in her imagination.

Dancing, it seemed, was something just for NT’s.

I Googled autistic dancers and immediately found an article and short film on Dazed magazine’s site about Mikiel, an autistic dancer who had performed alongside grime artist Stormzy at Glastonbury 2019. He was described as a passionate, stunning talent.

But most importantly for me, in his film, Mikiel says that he cannot do the conventional style of formal, rigid, choreographed pieces; but instead his style is much more improvised and spontaneous, highlighting what I found to be true of myself when I danced.

This is kind of the crux of why most autistic people struggle so much in society– the scripts for every role in every job, social situation, and even the directions laying out paths to success are written to be played by people without disability.

We are not “outside-the-box” on purpose. The box was constructed to exclude outliers, and we are never going to be within the boundaries of “normal.” This doesn’t mean we will never be trailblazers or innovators, but that we can’t do it within the confines of what people expect.

But, the character Sia wrote might have had motor planning and coordination issues, and her imagination might be a metaphor for longing for a world that is more accepting of the dance she can do when people drop the chains of expectations and let others be as they are and express themselves as they need.

It’s easy to imagine that an Autistic person might have an inner world where others follow their lead instead of always expecting the Autistic person to fall in line with the choreography of the status quo.

Or is it, once again, that this is a portrayal of an autistic character via the prism of the neurotypical gaze, assuming everything that you need to know about autism as it appears to an NT? Is it the lazy entitlement of a dominant culture ignoring the intricacies and richness of a minority when someone decides to appropriate an identity?

Or is it an honoring of the wishes of an individual whose story was told in the way that they envisioned it with the actor they chose? Are the breakaway dance sequences representative of a dream world wherein the protagonist doesn’t need to “follow the script”?

Either way, I’m sad for the missed opportunity to roll this film out in a way that did more to start the conversations we Autistic people need to have with the world. I’m sad for how the Autistic community has been treated, as if asking to represent themselves and be involved in a narrative representing an Autistic person is somehow being entitled.

Last week, Sia announced that she wanted to work with Communication First, a nonprofit that centers communication rights for Nonspeakers, and that she wants to fund an introduction to Music featuring Nonspeaking Autistics. While this does not erase the harm that has been caused, it is the best way to move forward.

Graciously, Communication First accepted that offer.

It is my hope that Communication First can help salvage what is good about the film and help to manage and inform the messaging in a way that maximizes the high profile platform Sia has for advancing the right messaging.

But even more, I hope that future directors will have the vision to let Autistic people write their own scripts. I hope that employers let Autistic people find their own professional rhythms. I hope educators and instructors can let Autistic people define what learning means and how to arrive there.

I hope that we stop seeing accommodations as how to help disabled people do things everyone else is doing and start seeing accommodations as letting people write their own paths to excellence, however that needs to look for them.

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One Response

  1. When I was ~18, people sometimes assumed I was a trained dancer when I improvised, but I was extremely slow at picking up on even simple dances with footwork etc. I still can’t tell whether two things are happening simultaneously (I can pay attention to both, but the threads of my mind just split instead of syncing up) so I would never be able to tell whether I was on beat with any sort of choreography. I felt really insecure while dancing in front of people for years even though it was a passion of mine, because I never knew whether I’d be laughed at as a “r*tard” (or once even asked if I was having a health crisis!), celebrated for my talent and/or energy, or get no response at all. I wish I’d been able to see that the talent and the disability are there at the same time, and celebrate myself for both.

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