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Sia’s once-obscure directorial debut, Music, drew initial backlash from disability advocates after the film’s teaser debuted in November, but the movie’s two Golden Globe nominations, announced in early February, have sparked a larger and sustained conversation about how the entertainment industry portrays autism.
Music centers on a free spirit (Kate Hudson) who moves back home to take care of her nonverbal autistic teenaged sister Music, played by Maddie Ziegler. Initially, people took to social media, upset by the casting of Ziegler, who has long starred in Sia’s music videos, instead of a performer on the autism spectrum. But with the Globe nominations and the film’s release (the movie received a one-night-only U.S. release Feb. 10 in select Imax theaters), Music faced renewed criticism, especially for a scene that shows Ziegler’s character being forcibly restrained in a prone position on the ground.
Activists and advocates noted on social media that the practice has been known to cause serious injury and, in some instances, death, with the National Autism Association calling the method “abusive.” In since-deleted Twitter posts, Sia reportedly apologized and announced that the movie would have a warning label placed at the beginning of the film due to the restraint scenes. (The singer-songwriter has since deleted her Twitter account entirely.)
“Hollywood tends to get it wrong most of the time because of the reasons you would expect — autistic people tend to be barricaded from most of the process,” says Noor Pervez, community engagement coordinator at Autistic Self Advocacy Network. The industry’s long history of issues around diversity and inclusion encompasses an abysmal track record when it comes to representing disability, including autism. The vast majority of characters across film and television that are portrayed as being on the autism spectrum are played by neurotypical actors, including Ben Affleck and Dustin Hoffman, the latter winning an Academy Award for his portrayal of an autistic savant in 1988’s Rain Man.
Pervez notes that stories like Music that include nonverbal autistic characters “are pretty universally stories about the people around us rather than ourselves.” He adds, “It is being done in a way that infantilizes AAC [augmentative and alternative communication] users and talks about us as though we are a burden rather than us just being a part of everyday life.”
Resources are available for industry players who want to represent disability authentically and ethically. “Because there is such limited representation of autism onscreen right now, every time there is representation it is going to be scrutinized, so do yourself a favor and make sure you are doing your research from multiple sources,” offers Lauren Appelbaum, vp communications for RespectAbility, which seeks to combat stigmas for people with disabilities. The organization works with companies like Netflix and Disney and individual filmmakers to provide resources and consultations — from script development to casting to site visits — that would better allow for the authentic portrayals of stories that include disability. It’s currently consulting on five projects that feature characters or actors on the autism spectrum.
RespectAbility consultant Ava Rigelhaupt, a writer-performer who is on the autism spectrum, has talked to writers and producers who are developing shows that feature autistic characters. She shares her own experiences and offers notes about dialogue and insights into a character’s physicality, but she also points out that she alone cannot speak for the entire community: “There is a saying: When you meet one autistic person, you’ve met one autistic person.”
Several advocacy groups have pointed to the Pixar-produced short Loop as an authentic representation of autism. Loop follows a nonverbal, autistic girl and a chatty boy, as they are partnered on a canoeing trip and learn to communicate. It was made as a part of Pixar’s SparksShorts, a short film program for new storytellers within the studios’ ranks. (The program also spawned the debut of the studio’s first gay main character in short Out.)
Writer-director Erica Milsom’s idea for Loop came after she took a sabbatical from her job as Pixar’s in-house documentarian and began to volunteer at NIAD, a Bay Area art center for adults with disabilities, where she was placed in a group that had several non-speaking individuals. Ahead of production, the filmmaker created a PowerPoint presentation shown to everyone working on Loop, from producers to animators, that detailed research as well as first-person experiences from individuals on the spectrum, in the hopes of helping the creatives convey the story visually and authentically.
“When you are leading someone into a space that they are unfamiliar with, the best thing you can do is to help them understand as much as possible,” says the director, who also brought in an adviser from the Autistic Self Advocacy Network. The adviser, who was previously non-speaking, shared their lived experiences and offered notes through the production, inspiring changes small and large. Initially, Renee had been imagined as white but was reconceived as biracial after the adviser told the filmmakers that doctors self-report that they are less likely to diagnose people of color. “We wanted to address that,” says Milsom.
Many autistic characters onscreen remain overwhelmingly male and white, as is the case for ongoing series like Netflix’s Atypical and ABC medical drama The Good Doctor. “Disability is very intersectional,” says Rigelhaupt. “I am an autistic Chinese adoptee with a white single mom. That is pretty intersectional, and I haven’t seen any stories like that.”
Madison Bandy, a local autistic talent from Oakland who is nonverbal herself, was cast as Renee. When it became clear that the cavernous recording studio at Pixar was not conducive to Bandy’s sensory processing, Milsom and her sound recordist relocated to Bandy’s home, which is where they recorded despite possibly problematic ambient noise.
“If the environment itself is hostile to us, you are going to have issues when you get onscreen because you haven’t meaningfully dealt with the community you are representing,” notes Pervez. Hiring autistic cast and crew for production can include making on-set accommodations, like providing noise-canceling headphones for the sound-sensitive. But for budget-sensitive Hollywood, any additional arrangements can be labeled as cost- and time-prohibitive.
“Those of us who have been in the industry for a really long time end up having a sense that this [one] way is the only way to attain perfection,” notes Milsom. “I think it is so good to challenge in yourselves, in your crew, in your process, in your studio, the concept of what is going to make a wonderful movie. See how you adapt to someone else’s process.”
The filmmaker spent weekends on YouTube watching panels and conversations featuring autistic people speaking about representation, as well as speaking directly to friends on the autism spectrum. Advocates and consultants note that first-person accounts are the ones that should inform the creative process. (In since-deleted tweets reported by multiple outlets, Sia mentioned that Music worked with charity Autism Speaks, which has long been criticized for its lack of autistic individuals on its board of directors and in top positions.) Suggested resources can be found at multiple self-advocacy organizations, both on the local or national level, as well as local Centers for Independent Living, or across social media.
Says Milsom, “Don’t go to their parents or therapist — go to them.”
As Hollywood looks to tell more inclusive stories, it is reckoning with how to best go about doing so. Those who spoke to THR for this story were quick to note that while research, consultation and inclusive casting practices are welcome improvements on a past filled with misrepresentation, the best practice is always to employ autistic individuals across the production. Says Applebaum: “Consultants are great. Writers are better.”
“When you tell a story about a community that is not your own, that is a responsibility you need to take really seriously,” concludes Pervez. “And if you can’t get the community you are trying to represent to be a part of the process, then that is a problem the industry has to deal with.”
March 1, 11:45 a.m. Updated to correct the name of the Bay Area art center where Milsom volunteered.
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