Golden Globe nominee ‘Music’ drew a lot of criticism for his portrayal of autism, while supporters point to Pixar’s ‘Loop’ as an example of an authentic narrative about a community that has long been underrepresented.
Sia’s debut in the previously obscure direction, Song, drew Disability advocates’ initial reaction following the film’s teaser premiere in November, but the film’s two Golden Globe nominations, announced in early February, sparked a broader and protracted conversation about how the entertainment industry portrays autism.
Song focuses on a free spirit (Kate Hudson) who returns home to care for her non-verbal autistic teenage sister, Music, played by Maddie Ziegler. Initially, people went to social media, upset with the cast of Ziegler, who has long acted in Sia’s music videos, instead of an artist with autism. But with the Globe nominations and the release of the film (the film received a one-night US release on February 10 at some Imax theaters), Song faced new criticism, especially for a scene that shows Ziegler’s character being forcibly restrained in a lying position on the floor.
Activists and advocates have noted on social media that the practice is known to cause serious injury and, in some cases, death, with the National Autism Association calling the method “abusive”. In posts already deleted on Twitter, Sia allegedly apologized and announced that the film would have a warning tag placed at the beginning of the film due to the restricted scenes. (The singer and songwriter completely deleted her Twitter account.)
“Hollywood tends to make mistakes most of the time because of the reasons you would expect – autistic people tend to be blocked during 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 spans an abysmal history when it comes to representing disability, including autism. The vast majority of film and television characters portrayed as belonging to the autism spectrum are played by neurotypical actors, including Ben Affleck and Dustin Hoffman, the latter winning an Oscar for his interpretation of an autistic autist in 1988 Rain man.
Pervez notes that stories like Song which include non-verbal autistic characters “are very universal stories about the people around us, not about ourselves”. He adds: “It is being done in a way that infantilizes AAC [augmentative and alternative communication] users and talks about us as if we were a burden, instead of just being part of everyday life. “
Resources are available to industry participants who wish to represent the disability in an authentic and ethical manner. “As there is a limited representation of autism on the screen now, every time there is a representation, it will be examined, so do yourself a favor and make sure you do your research from multiple sources,” he offers. Lauren Appelbaum, vp communications for RespectAbility, which aims to combat the stigmas of people with disabilities. The organization works with companies like Netflix and Disney and individual filmmakers to provide resources and consultations – from developing the script to casting and site visits – that would allow authentic portraits of stories that include disabilities. He is currently a consultant on five projects featuring characters or actors on the autism spectrum.
RespectAbility consultant Ava Rigelhaupt, a writer-performer who is on the autism spectrum, talked to writers and producers who are developing programs featuring autistic characters. She shares her own experiences and offers notes on dialogues and perceptions about a character’s physicality, bbut she also points that she alone cannot speak for the whole community: “There is a saying: when you meet an autistic person, you meet an autistic person”.
Several advocacy groups pointed to the short film produced by Pixar Link as an authentic representation of autism. Link Follow a non-verbal autistic girl and a chatty boy, as they are partners on a canoeing trip and learn to communicate. This was made as part of Pixar’s SparksShorts, a short film program for new storytellers inside the studios. (The program also spawned the debut of the studio’s first gay main character, in short Outside.)
The idea of the writer and director Erica Milsom for Link came after taking a sabbatical from her work as an in-house documentary maker at Pixar and started volunteering at NYAD, a Bay Area art center for adults with disabilities, where she was placed in a group that had several non-speaking individuals. Prior to production, the filmmaker created a PowerPoint presentation shown to everyone working on Linkfrom producers to entertainers, this in-depth research, as well as first-person experiences from individuals on the spectrum, hoping to help creatives convey the story in a visual and authentic way.
“When you’re taking someone to a space they’re unfamiliar with, the best thing you can do is help them understand as much as possible,” says the director, who also brought in a consultant from the Autistic Self Advocacy Network. The counselor, who before he did not speak, he shared his experiences and offered notes throughout the production, inspiring small and large changes. Initially, Renee had been imagined to be white, but was re-conceived as biracial after the consultant told filmmakers that doctors reported that they were less likely to diagnose people of color. “We wanted to resolve this,” says Milsom.
Many autistic characters on the screen remain predominantly male and white, as is the case with ongoing series like Netflix Atypical and ABC medical drama The good doctor. “Disability is very intersectional”, says Rigelhaupt. “I am an autistic Chinese adoptee with a white single mother. This is quite intersectional, and I haven’t seen any stories like that.”
Madison Bandy, a local autistic from Oakland who is also non-verbal, was cast as Renée. When it became clear that Pixar’s cavernous recording studio was not in favor of Bandy’s sensory processing, Milsom and his sound recorder moved into Bandy’s home, where they recorded, despite the potentially problematic ambient noise.
“If the environment itself is hostile to us, you will have problems when you enter the screen because you have not dealt significantly with the community you are representing,” notes Pervez. Hiring an autistic cast and crew for the production may include on-set accommodations, such as providing noise-canceling headphones for those sensitive to sound. But for budget-conscious Hollywood, any additional arrangements can be labeled as cost and time prohibitive.
“Those of us who have been in the industry for a long time end up feeling that this [one] the path is the only way to achieve perfection ”, observes Milsom. “I think it’s very good to challenge in you, in your team, in your process, in your studio, the concept of what is going to make a wonderful film. See how you adapt to someone else’s process. ”
The filmmaker spent the weekends on YouTube watching panels and conversations with autistic people talking about representation, as well as talking directly to friends on the autism spectrum. Advocates and consultants note that first-person reports are the ones that should inform the creative process. (In already excluded tweets reported by various media, Sia mentioned that Song worked with the charity Autism Speaks, which has long been criticized for its lack of autistic individuals on its board of directors and in leadership positions.) The suggested resources can be found in various self-defense organizations, both at the local level nationally, also as local Centers for Independent Living or on social networks.
Milsom says: “Don’t go to your parents or the therapist – go to them”.
As Hollywood seeks to tell more inclusive stories, it is considering how best to do so. Those who spoke with THR for this story, they were quick to note that while inclusive research, consultancy and casting practices are welcome improvements in a past full of misrepresentations, the best practice is always to employ autistic individuals throughout the production. Applebaum says: “Consultants are great. Writers are better. “
“When you tell a story about a community that is not yours, it is a responsibility that you need to take very seriously,” concludes Pervez. “And if you can’t get the community you’re trying to represent to be part of the process, then that’s a problem that the industry has to deal with.”