Behind Good Intentions: An Autistic Perspective on Sia’s Film Music

Despite claims of writing Music out of “nothing but love” for the autistic community, Sia’s angry response to autistic Twitter users proves the opposite

Lindsay Fortin // Contributor
GERALDINE YARIS // Illustrator

Sia hides behind a porcelain mask of good intentions. It’s pretty, easy to trust. But it’s also just that—an object easily put on and easily taken off. It lacks anything real and sturdy that would turn into something more steadfast, more true. It’s also easily broken.

Sia came under intense scrutiny when the trailer for her movie Music, which follows a nonspeaking autistic girl, was released. Creating anything about an autistic person when you’re neurotypical is not only a difficult undertaking filled with massive amounts of research but also a huge moral and social responsibility. Autistic people, like many disabled people, still fight to be seen as equals to their neurotypical and able-bodied counterparts. This responsibility is doubled if someone is non-speaking or visibly disabled, and it’s one that Sia completely disregarded.

The only way she could have avoided this would’ve been to involve autistics with writing, directing, acting, art direction, and production—essentially at every level. Only we know the problems we face as a community and how that translates into real-life discrimination. Only we could have prevented this mess and turned it into something great.

The root of the controversy lies not in Sia casting a neurotypical actress to play a nonspeaking autistic character, but in reality, it goes much deeper than that. Sia claims to have spent three years on research for this film. I find that difficult to believe because she doesn’t seem to know the most basic facts about autistic people or the primary issues that we face as a community. It’s especially important to understand and avoid stereotypes when you’re writing about a marginalized community

Most people don’t believe that I’m autistic. Many people tend to think of autistic individuals as “simple,” or “not all there.” This is especially true for nonspeaking autistics. Choosing to depict a nonspeaking autistic girl’s inner world as full of garish primary colours, rainbows, and simple shapes is not only insulting but highly irresponsible. It doesn’t matter that this style is consistent with her repertoire—in this context, it’s damaging, and Sia should have known better. The only way she could have avoided this would’ve been to involve autistics with writing, directing, acting, art direction, and production—essentially at every level. Only we know the problems we face as a community and how that translates into real-life discrimination. Only we could have prevented this mess and turned it into something great.

The only experts on autism are autistic people, and this was never her story to tell.

It’s true that I haven’t seen the movie and that I’m basing my opinion off of the trailer and a music video for the film. I wish I could say that I’ll give the movie a chance and that I might be wrong in my assumptions, but Sia has mismanaged this narrative at every level. She uses functioning labels, which are not only reductive but wildly inaccurate. She patronizingly calls disabilities “special abilities” and doesn’t know that disabled is not an offensive term. Part of Maddie Ziegler’s (the actress who plays Music) research was watching invasive meltdown videos of autistic children. And worst of all, she aligned herself with Autism Speaks, which many autistics consider to be a hate group that likens autism to a disease that should be eradicated. Their infamous “I am Autism” video only scratches the surface of their beliefs. All of this points to an irresponsible lack of knowledge entirely inconsistent with her “years” of research.

When you’re autistic, you often come across eugenicist rhetoric aimed at you. People on social media discuss finding the genes that cause autism and systematically weeding it out as casually as if they were deciding whether or not a top in a store suited them. And of course, we all know the people who would rather let their infant die than be vaccinated. Sia could not even begin to imagine the weight that carries. She cannot understand the weight of her decision to create something centred around an autistic character and how a piece of media can influence people’s already warped perceptions. She said herself that she has her own “unique view of the [autistic] community,” which is apparent. If she was really an ally, she would’ve listened to us. But instead, Sia hurled insults at autistic Twitter users for their criticism about the movie, growing instantly defensive and insisting that she was in the right rather than taking the opportunity to learn.

This movie should never have been made. It reeks of a saviour complex and inspiration porn. She even said, stating that the community was “underrepresented,” and that’s what “compelled [her] to make [the movie.]” There’s one thing that’s worse than no representation, though, and that’s harmful, inaccurate representation. The only experts on autism are autistic people, and this was never her story to tell. It doesn’t matter if her “heart has always been in the right place,” as she claimed. Intent will never negate impact.

4 Comments
  1. I’m really curious how this representation is inaccurate? Because it isn’t your experience, does it mean that it isn’t valid. Over and over in media, we see representations of “high functioning” people with autism, rarely do we see people who are greatly affected by it. Non-verbal people also deserve representation and because their experience is not the same as yours does not make it an invalid perspective. Verbal or communicative representations of autism are not the only ones that matter and they also do not necessarily empathize with nor understand those who have been non-verbal and non-communicative their entire life.

    1. Hi Amanda,

      Thank you for your comment. My argument here is not that only stories featuring verbal autistics are the ones that matter. I in no way advocate for that. The crux of the issue is that Sia is not autistic herself and had no place making a movie about life as a nonverbal autistic person. A misstep on her part can be really damaging. And even though media might seem to represent people on the spectrum who are verbal, I don’t consider it real representation unless it was created by an autistic person. In fact, the characters that come to mind are often poorly written caricatures of autistic stereotypes, and not representative of autism at all. Characters like Raymond in Rain Man or Sheldon Cooper in The Big Bang Theory aren’t autistic representation, but that’s a whole essay right there. What I’m actually arguing is that nonverbal autistics deserve much better than this, and that autistic people deserve to represent ourselves.

      I can talk, but I wouldn’t consider myself “high functioning.” I “function” very poorly. I’m not nonverbal, that’s true. But I do know what it’s like to lose the ability to speak because of sensory overload, stress, or burnout. It happens often. It’s frustrating, isolating, and at times, scary. I know what it’s like to have loud meltdowns in public places. I know what it’s like to be visibly different to others. The thing about autism is that it’s a spectrum disorder, which means that people can be really strong in some areas and really weak in others. I have severe sensory issues, difficulty with social interactions, eye contact, nonverbal communication (meaning gestures, body language, tone of voice, all that stuff), etc… I’m writing this as I lie under my weighted blanket in a dark, quiet room with my noise cancelling headphones on. I’m also listening to music that I find emotionally and physically regulating. Listening to music is one of the primary tools I use to help me get through my days. I always have, since I was a young child. I think that in particular sounds quite similar to what Sia hoped to portray and failed miserably at. I know, because it is my experience. And I am, in fact, greatly impacted by my autism. I should not have to type all of this out to you to justify myself and my stance. This is private information. But I will share it with you because I want people to become kinder and more understanding to people on the spectrum, and I hope that this information helps you have a more nuanced understanding of what autism is.

      Autism does not exist on a sliding scale of “mild” to “severe,” with “severe” meaning nonverbal. It is much more complex than that. I will never know what it feels like to be nonverbal, and I won’t ever understand the discrimination that they face on a daily basis because of it. But even then, I will always have more similarities with a nonverbal autistic person than I ever will with a neurotypical person.

      So to answer your question about how this representation is inaccurate:
      Sia isn’t autistic herself, and therefore doesn’t know how autism affects our daily lives. She based the character around a man she knew and taught Maddie his facial expressions and body movements she remembered him doing instead of taking the time to do in-depth research about what purpose those stims might serve, or employing autistic consultants on the matter. Maddie Ziegler has herself said that most of her research was based around Leonardo DiCaprio’s character in What’s Eating Gilbert Grape, which is another non disabled actor playing a disabled character (one who’s not even necessarily autistic, if I understand correctly). Based on that alone, it’s inaccurate. By not employing autistic people (and specifically no one from a self advocacy group) to help write and consult on the film, she misses the only opportunity she had to make this a decent attempt at representation. And I will always believe that you can’t claim to represent a group that you’re not a part of.

      This article isn’t coming from a place of “this isn’t my experience which means it’s inaccurate,” but rather one of “writing a point of view autistic character in a story about autism when you’re neurotypical is an immense responsibility—one that Sia should never have felt entitled to tell in the first place—and she is actually being reckless with the safety of autistic people by not taking that seriously.”

      If you would like to learn more about what a nonspeaking autistic person’s experiences are like I highly recommend reading The Reason I Jump by Naoki Higashida. I would also recommend this video: https://www.youtube.com/watch?v=H7dca7U7GI8&feature=emb_logo&ab_channel=CommunicationFirst

      Hope I was able to clarify some things.
      Lindsay

  2. Amanda, you must be an “autism parent”.

    You guys seen to have this idea that those of us who are verbal and/or with lesser support needs (seriously, why are you using functioning language after it was clearly pointed out to be offensive?) are completely separated from nonverbal and/or higher support need autistics.

    For one, not every non verbal autistic is higher support needs, and not every higher support needs autistic is nonverbal. The “spectrum” isn’t linear.

    As far as us not having empathy for our understanding higher support need and/or nonverbal autistics…. We understand them better than allistics do. Many of us have friends that are nonverbal, etc.

    The idea that we’re wholly separate and have nothing to do with them is Warrior mom sole saviour hogwash, frankly.

    Also, to bust another one of your myths: “nonverbal” does not mean “doesn’t communicate”. I will never understand why you people are so hung up on spoken words.

    If you spent more time “listening” to your kid (and not just with your ears) and less time going after autistics online, life would be better for everyone.

  3. Marie, based on your backlash for Amanda’s comment, I noticed in the trailer for the movie that one of the main characters explains nonverbal to Kate Hudson saying that just because she doesn’t speak doesn’t mean she can’t communicate. There were scenes clearly showing her communicating as well, so wouldn’t this movie help educate neurotypicals on the exact point you’re trying to make?
    I would also like to caution you against the use of “you people” as it’s not a great precedent for our community when you use rude language that separates us more. This alludes too much to racism and discrimination.
    One point I cannot fathom is why so many in our community are against the movie and choice of actress. Almost every TV show or movie casts actors without a condition (think non lgbtq, non cancer having, non mental illness having), yet none of these groups have attacked the industry. In fact, all these groups appreciate having some representation for them.
    Sure Sia may not have done full and proper research and associated herself with the wrong organization, but I don’t see anything inaccurate and like everyone mentions, autism is a nonlinear spectrum. Everyone has a different experience, this movie just showcases one and brings more attention to us.

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