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  • Writer's pictureKit Ross

"Nothing About Us, Without Us" [MNPC, Jan 2021]

This was originally published on the Midlands Network Of Popular Culture blog on January 13th, 2021.


In late November, the musician Sia shared an excited tweet, announcing that she’d written and directed a short film called Music, a fictional tale about a non-verbal autistic girl of the same name. The attached trailer caused a furore among the autistic community, as it revealed that actress and dancer Maddie Ziegler - who is not autistic - would be playing the titular character.


A little background on me: I’m autistic, and much of my work, both creative and academic, has focused on my experiences as an autistic person, as well as the way the autistic people are represented in the media. I’ve written essays, plays, and made several documentaries on the subject. My reaction to this controversy, was, naturally: disgust, but not surprise. This is merely the latest in a decades-long string of disappointments.


Autism does have a significant presence in films and TV, and has done for a long time. As Stuart Murray remarks: “autism is in some way a condition that has acquired a particular and specific emphasis, and indeed popularity, in the very contemporary period”[1]. One only has to look at the popularity of Mark Haddon’s The Curious Incident Of The Dog In The Nighttime - both the novel and latterly, the stage adaptation - as evidence of this.


Television networks and streaming services have seen a boom in autism focused content - Netflix’s Atypical and the BBC’s The A Word being just two examples. It is therefore morally crucial that when we create characters with autism on stage, screen and television, we do so in a way that is sensitive, accurate, and not reliant on stereotypes. While many writers, directors and actors have made attempts to do so, it is quite alarming to see the distinct lack of openly autistic creatives within the field. Neither of the aforementioned television shows have an autistic actor playing their autistic lead characters, and while the stage production of The Curious Incident Of The Dog In The Nighttime has had an openly autistic actor playing the lead role of Christopher, this didn’t happen until five years after the show opened. Notably, it was not in the major productions on Broadway or London’s West End, but rather in a small production in the Indianapolis Reparatory Theatre. Autistic people, and the disabled community as a whole, are continually left out of the conversation about how our stories are told in the media. Data from a 2018 Ruderman Family Foundation white paper studying 284 television shows found that only 21.6% of disabled characters were portrayed by an actor with the same disability. The vast majority of the authentically portrayed characters had physical disabilities, rather than mental or learning disabilities - or autism spectrum disorders. Perhaps these are seen as “easier to fake” than physical disabilities. But there is a level of authenticity in a performance that can only come from lived experience.


Sitting down to watch the trailer, I mustered a little hope. Maddie Ziegler is a dancer, and a talented one at that. Her performances in Sia’s music videos demonstrate an incredible balance of bodily awareness and control, and utter freedom of movement. Surely, if any neurotypical person could portray an autistic character, she would be the one?


Sadly, my hope was misplaced.


Ziegler’s performance - at least as far as the trailer demonstrates- is painfully inauthentic. Her movements seem like a bare-bones attempt to present broad, outdated stereotypes of autism - and at times, she seems to drop out of character mid-motion. The only two phrases Music speaks through her assistive device are broad, basic statements about her emotions: “I am happy” and “I am sad”; these seem alarmingly basic and childlike for a character who we are informed “understands everything you are saying”.


The lack of autistic talent involved in this film is obvious; herein lies the problem. Maddie Ziegler has stated that she prepared for the role by watching YouTube videos parents post of their autistic children having meltdowns. For the uninitiated, a meltdown is defined by the National Autistic Society as “an intense response to an overwhelming situation. It happens when someone becomes completely overwhelmed by their current situation and temporarily loses control of their behaviour. This loss of control can be expressed verbally (e.g. shouting, screaming, crying), physically (e.g. kicking, lashing out) or in both ways”. It can be triggered by sensory or information overload, anxiety, frustration, or many other things. As someone who has experienced this, I’ll put it simply: it is the most distressing experience a person can go through. The fact that parents film their children having meltdowns and put it on YouTube is horrifying in itself - there’s a petition to have these banned from the site - but using this content to inform your entire performance of an autistic character is just awful. Music is a film that is clearly trying to paint a positive picture of autistic people and our view of the world, which in of itself is a good thing. But Ziegler used footage of autistic people in their worst, most distressed state to inform her performance of an autistic person at their happiest. Any autistic person would point out how illogical, and frankly insulting that is.


In my view, a large part of the issue comes down to how the neurotypical world as a whole views autism. When people hear “the autism spectrum”, what many people picture is something like this:



But this creates an overly simplistic view, one which leads to issues, no matter which end of the spectrum you’re perceived as being at. In terms of writing for film and television, it leads to characters that fit lazy stereotypes - how many times have we seen the “incredibly intelligent but unflinchingly rude” or “savant who can’t handle loud noises or changes in routine” characters? How many of them are straight, cisgender white men? This “0-100” view of autism is not only a poor representation of the community; it just leads to deeply uninteresting characters and basic representations of tired stereotypes. To its credit, Music does present a character from a hugely underrepresented portion of the community - someone who is both non-verbal and female. But it does lack nuance and authenticity that hints at this stripped back view of the subject matter.



A better way of viewing the autism spectrum might be this:


[These two visualisations are based on ones found in “Understanding The Spectrum- A Comic Strip Explanation” by Rebecca Burgess, which you can access here]


When you view the spectrum like this, it’s much easier to paint an authentic image of any individual autistic person. Maybe they’re like me: pretty awful executive functioning and working memory and a total lack of spatial awareness and hand-eye coordination, but very well spoken, and loves tight hugs and going to gigs. Or like my friend S: can’t cope with physical contact or unfamiliar foods and has a very limited social battery, but is the kindest, most thoughtful person I know, and can juggle a million projects and tasks all at once. When you see the nuance in the way autism presents itself in different people, and use that to inform your writing or acting, then you create something far more interesting, far more sensitive, and far more accurate than the lazy stereotypes that have haunted the film industry for years.


We need to see Music as a cultural turning point for how we portray autism in the media - a warning for what happens when you don’t involve the community in the creative process. Music could have been something incredible - a colourful celebration of the beauty in unique ways of perceiving the world. But the lack of autistic involvement at any stage of the creative process has led to just another tired portrayal, a patronising show of “support” from neurotypical creatives. It’s time for the industry to listen to us when we say: nothing about us, without us.

by Kit Million Ross, January 2021


[1] Murray, S., 2008. Representing Autism. Cambridge: Cambridge University Press.


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