When my son was newly diagnosed with Autism Spectrum Disorder (ASD), I spent hours scouring the internet. I watched the meltdown videos on YouTube, I bought all the books, I researched all the so-called experts. I was desperately, frantically searching for answers on a new world that I knew nothing about. The most valuable and integral resource I found, that was absolutely crucial to my education on autism was, and continues to be, autistic adults.
Only they can describe what autism feels like, because they’ve felt it. Only they can tell me what sensory overload does to their body, because they’ve experienced it. They are the experts.
So when I found out that Sia was releasing a film about a young girl on the spectrum, I was surprised to find that she didn’t consult the real experts, people with autism, on how her main character ‘Music’ should be portrayed. Instead, Sia consulted with controversial charity ‘Autism Speaks’ - who have been criticised in the past for framing autism as a 'disease' that needs to be 'cured,' and their depiction of autism more broadly.
Sia also cast the main character as Maddy Ziegler, who does not have autism. When I watched the trailer for the film, I felt that all too familiar knot in my stomach, that feeling of anger, disappointment and frustration. Once again there was a misrepresentation of autism in the media that fuels the stereotype of autistics as either infantile and incompetent or geniuses with superhuman intelligence.
Watch the trailer for Music - A film by Sia. Post continues below.
When the autistic community spoke up about their thoughts and feelings towards the film, and made suggestions on how it could be improved, they were quickly shut down by Sia and others who labelled them ungrateful for Sia spreading awareness about autism.
In my opinion, it's not awareness around autism that's needed. It was estimated in 2015 that 1 in 150 people have autism and now that we are understanding more about how autism presents in girls, that number is set to double. Most people will know or have encountered someone with autism. What does need awareness is the way we include, engage with and listen to people with autism. It needs to become second nature that when a minority express that they are feeling angry or sad at the way they are being treated or portrayed, then the other party listens, apologises and does not try to undermine their feelings or opinions. If this film is about representing autism, the opinions of autistic people matter.