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The Autism Spectrum According to Autistic People

Autism neurodiversity
Autism neurodiversity

Sia’s Film and the Deficit Model of Disability

The Autistic Community’s Reaction to Music

Right before the debut of Music, Sia made an announcement that she was pulling the restraint scenes from her movie and apologized for having listened to the wrong people. This series explores why autistic people were upset when they saw the movie’s trailer, who those wrong people are, and who Sia and others could turn to for better insight, research, and education.

Okay, okay so you’re tired of reading about how so many autistic individuals have so many problems with Sia’s movie, Music, without even seeing it.

The Autistic Community is tired of being ignored.

I’m not here to suggest you not see Music or to influence your feelings about Sia or the film. I’m here to help you understand why Autistic people have valid grievances and to talk about how harmful the wrong representation can be— for any project.

Public Perceptions of Autism

Let me be clear, I don’t believe autism is a problem, and it definitely isn’t an epidemic. I think the misinformation spread and assumptions made due to biased perceptions is the issue instead.

I’ve been that masking autistic girl in class. Actually, I still am to a certain extent. On multiple occasions, I’ve found myself sitting next to the ignorant classmate who takes it upon themselves to explain how vaccines cause autism without even realizing that they themselves had to be vaccinated to even attend school.

I’ve even dared to ask classmates their views a few times. Needless to say, the responses were dehumanizing, often derived from assumptions, lack of exposure, and supported by “evidence” from no one who identifies as autistic.

Most of the time, these assumptions are a mirror of the information put out by harmful organizations that portray autism as a disease or a burden that needs to be fixed and tamed into normality.

Why do I bring this up?

Because these are the same organizations who serve as consultants on projects that manipulate the world’s view of us and some of the same organizations (like Autism Speaks) Sia used to do research for her film.

Much of the frustration that people are seeing from us is due to the fact that we’ve been fighting the harm caused by these organizations every day for years and years with little understanding from the outside world.

If Autism Speaks is the only organization you can think of when you think of Autism, then that’s a problem. Most Autistic people see Autism Speaks as a hate group.

These organizations, and others, help spread the myth that disability is solely the problem of the disabled person. For Autistic people, the degree to which we are disabled, in many ways, is directly related to social and environmental factors. Most “autism organizations” are centered on a narrative that we need to be enrolled in intensive behavior therapy to make us more “normal.”

The toxic messaging from these organizations influences the way we interact with, teach, and accommodate disabled people around the world.

Autistic Representation

When I heard Sia was making a movie about a nonspeaking autistic girl, I was ecstatic. Me, a speaking autistic woman with selective mutism, would finally be able to see someone somewhat like me on the Big Screen.

It was 2020, and inclusion was being demanded and finally prioritized (somewhat) here in America. Things were starting to look a little brighter, right?

People with disabilities were making headlines for reasons other than being inspiration porn and billboard warnings. We had the wildly successful Everything’s Gonna Be Okay that showed the world that autistics are human beings as diverse as any other group– not threats to humanity.

As an autistic woman, I wanted to see other people in my community accurately represented as well– especially nonspeakers and those with higher support needs than myself. Instead, In the case of Music, a non-disabled actor played the part.

Representation is too thin.

First of all, movies aren’t just movies. When you live in a world that only sees you as undesirable or a tool, fiction can be an escape from reality or a way to explore the world.

Acting isn’t just playing dress-up and pretending to be someone or somewhere else. For many, the actor we see onscreen is sometimes the only way we get to see people like us, the only representations of our existence and a direct reflection of the way the world views us. Since there are so few representations of Autistic people, it matters that it actually represents us.

It’s hard to mention autism without someone asking if we’ve seen Rainman. We need to not go through this for another thirty years with the general population only knowing us through a fictional autistic character played by a non-autistic actor.

Acting is also a skill that requires taking on the qualities of an imagined character and portraying them in a way that convinces the audience that you are them.

In order to do this, you must find an emotional connection to that character. How is this possible when then world still thinks we’re subhuman, emotionless, or infantile mistakes?

Unless the actor seeks openly-Autistic friends, and autistic people are involved in carrying out a vision, I don’t see how non-autistic actors can accurately portray characters they don’t and can’t understand.

Acting as a Way of Life

And before you question autistics playing non-autistics, take into consideration that every time autistic people step out of their doors, they don a mask, forced to pretend they’re someone they aren’t. We act neurotypical on a daily basis— not to mock or mimic, but to survive without support and not be denied opportunities.

There is a major difference.

So while autistic actors do play neurotypicals, they use skills they’ve acquired by having to use them every day of their public lives– not just when the camera stops and starts.

The line between acting and mocking.

So what made all autistic actors ineligible to play Music? Autistic people can tell when we’re being copied and made fun of, even if unintentional. We can usually pinpoint the types of people and organizations consulted from the subtleties that most people would miss.

Our communication differences, behaviors, and body language make sense to us, but an outsider can’t really understand the nuances or why we do what we do.

Similarly, Autistic people have subtle and nuanced behaviors and communication that doesn’t always make sense to non-autistics. We also have a culture, community, and language preferences within disability communities and an even more specific dialect in Autistic spaces. Unless someone is intimately familiar with our language and culture, they will be “speaking gibberish.”

Learning our language is like learning any language. It takes study, immersion, and practice.

When Autistic people saw the trailer for Music, they could see that there was influence from the wrong organizations and information and that it wasn’t the Autistic community who was consulted.

While Sia may have had the best intentions, Music shows the reality that Autistic people are still overlooked because of the toxic influence of organizations, like Autism Speaks, that work against us.

Autistic people are frustrated because we exist, we act, we sing, we write, we dance, we consult, we do choreography, we design costumes, we build sets. We are vastly under-employed due to a lack of the right information and access to the right accommodations and acceptance.

Yet getting people to even know we are out here is like pulling teeth all because the same harmful organizations that show up at the top of every search related to autism and that market themselves as the experts in autism will not relinquish their many-million dollar hold on our narrative. These organizations follow the deficit model of autism.

Sia didn’t realize there is an autism community and an Autistic community.

The Autism Community and the Autistic Community

As an autistic writer currently pursuing an MFA in Writing & Producing for Television, I have seen the effects of deficit thinking in the media when it comes to my own work. I tell stories that feature disabled characters, but at least half of my feedback or contest submissions have been attacked for portraying autistic or otherwise disabled people in “unrealistic situations.”

I have been told to make my characters “slower” or more like the “Good Doctor,” have them be more afraid and dependent, make them more confused, or show funny interactions at my characters’ expense. “I don’t see the disability,” I’ve been told by one reader who went on to say that I should never submit stories like mine, and that I should focus on how their problems affect their families and friends instead.

Apparently my works don’t show real autism or invisible disabilities because my characters tend to be students, artists, or undiagnosed and travel alone and have a friend or two. Issues like this are not uncommon when it comes to disabled people trying to tell their own stories, so when a project as high profile as Music comes along, it is devastating that the wrong people are consulting for them.

We have the talent, the insight, and right information to help the world understand us, but not the platform. We need people with the stature of Sia to invite us to the process. We need toxic organizations to stop exploiting every opportunity to gain credibility by monopolizing the “market” on autism.

It is our hope that Sia continues to learn from the right people and organizations and that others will take note. We do not want writers to avoid the risk of writing Autistic characters. We want that representation. We just want to make sure that it is informed by the Autistic community and not the autism community.

Part 2 of this series focuses on who exactly those wrong organizations are and part 3 focuses on the right people.

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One Response

  1. Moving. Very well written and well done.

    It seems we autistics must rely on such events and bad representations to evolve positive perspectives like these.

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