I’m watching Heartbreak High, Netflix’s new remake of the cult 90s Aussie teen drama. It’s episode two and Quinni, played by 25-year-old autistic actress Chloe Hayden, is having a fight on a date.
Sasha (Gemma Chua-Tran) is misreading Quinni’s sensory overload and lack of facial expressions as a lack of interest, forcing Quinni out of the closet. “I’m autistic, Sasha”, she sighs, a conversation many of us have been pushed into against our will.
It’s a difficult position to find yourself in: in outing yourself, you risk being vulnerable, judged, further ostracised for your differences and people’s perception of them. By not copping to it, you risk being misunderstood, people reading your distress in a public place or lack of upbeat intonation as a lack of care. It’s the first time I’ve seen this dilemma represented on-screen.
Later in the same conversation, Sasha tries to say she’d never have known – like autism is some weird, dark secret Quinni has been hiding. “I’ve met autistic people and you’re like, really emotionally intelligent,” she declares, leading Quinni to eyeroll and clapback “OK, Sia.”
This is pointedly specific, and not just because it’s a conversation many of us have had with people who think they know our neurology better than we do. It’s also a reference to the furore surrounding Sia’s 2020 movie, Music, starring non-autistic actress Maddie Ziegler as an autistic character.
When autistic people and actors raised issues with her casting, Sia got into Twitter fights and made personal jabs at people’s acting skills. She went on to insist Ziegler’s casting was due to nepotism, not ableism.
The furious backlash eventually led to an apology, of sorts. “Looking back, I should have just shut up; I know that now,” the singer and director said. “I fucked up this time.”
That was just two years ago. Chloe Hayden was integral in campaigning against Sia’s Music and raising awareness of the importance of representation – so to see her in a key role, leading a teen drama as an autistic character, feels full circle. To go from feeling powerless and like the industry was never going to change to watching an autistic actress make a little joke about that painful period of time is nothing short of euphoric.
It’s rare to see a production get it so right, but it starts with hiring autistic people at every level of a project. For I Used to Be Famous, a made-for-Netflix movie about a washed-up popstar who is reinvigorated when he jams with an autistic drummer, the crew collaborated with experts from start to end.
Producers cast autistic actor Leo Long in the role of Stevie, and partnered with accessibility consultancy Access All Areas to support Long in getting ready on set and during filming. They also gave training to the production team that helped them to spot where Leo needed additional support. It’s a lesson to be learned for all industries – autistic people can be capable and offer a great deal in any role, but they need to be offered the support to thrive.
Also involved was Leo Capella, an autistic consultant and job coach with the National Autistic Society (NAS). He reviewed the scripts at every stage, looking over at least three versions, and pointed the writers to work by autistic people.
“To begin with they had something really good,” Capella tells me, adding that there were some aspects in early drafts that gave in to ‘saviour’ stereotypes. “They had some really interesting characters in the form of Stevie, but it was about fleshing Stevie and his mother Amber out,” Capella says. “They really responded and they improved it every time.”
The NAS also gave the production its blessing by sharing the open casting call that found Leo Long. This had a huge impact on his future: Long has been cast in more roles, and gained the forward momentum he deserves.
Capella believes that sharing our perspectives is the only way forward. “Disabled people need to be in every part of the production. It’s about telling those stories, getting those perspectives, both in front of and behind the camera. That way we can have some really meaningful discussions,” he says.
And when it comes to representation, Capella believes we’re currently going through an unusually good patch: “Chloe Hayden going from the Sia controversy to making a joke about her on-screen – that’s poetic justice!”
He’s also generous about poor representation: “It’s not done out of malice,” he says of creatives who get it wrong. “They’re a nervous, unsure person who gets an idea, runs with it, keeps going, and by the time they come into contact with the autistic community, they go into a spiral of defensiveness.”
But there’s a way to avoid that spiral: people wanting to make projects about autistic people need to include us from day one.
“We need a lot more constructive collaboration so autistic people can take their place in the wider human landscape. That would be the greatest triumph,” says Capella. How do we keep this momentum and ensure that autistic people are represented at all levels? It’s about committing to include us. Every single time. As they say in the community, “nothing about us without us”. That goes for every disability.
TV and movies are a reflection of our day to day life, and vice versa. What we see on screen influences how we treat real people and what we come to expect from them. If someone has never met an autistic person in real life, their assumptions about autism will be impacted by what they see on screen.
They might expect a person to be incapable, to need saving, or to have savant-like abilities. Especially when those characters are not played by autistic people, the result is likely to be a 2D, lazy understanding of what it means to be autistic. We have our own individual needs, skills and personalities, but you wouldn’t think so if you’d only seen us on TV 10 years ago.
Plus, autistic people on the whole are very underemployed. Only 22% of us are in any kind of employment, and 16% full-time, despite many more being capable. To see a role that could have gone to an autistic person go to yet another non-autistic one is painful and unfair. Capella agrees, but points to the positive ripple effect TV could have.
“Accurate representation reduces resistance by employers and by other people to seeing autistic people in different places,” says Capella. “It’s about showing the diversity of people in positions, it’s about providing role models, it’s about showing how they can be supported.”
Sometimes people ask: why does it matter? Why do we need to be played and represented by people who understand what it means to live our lives? “It matters because it’s about increasing that public understanding of autism and challenging misconceptions and stereotypes. If those things are challenged, you’ll see more people inspired to go down different paths,” says Capella.
I also hope this increased awareness of the importance of true representation for autistic (and other disabled and neurodivergent) people has a ripple effect. I want to see employers upfront offering support and accommodations for potential employees, from the hiring process all the way through to the day they leave. I want to see friends and family asking more questions to get to know our needs accurately rather than making assumptions. I want us to be and feel included in every aspect of life and, I hope, that starts on screen.
I never expected to see real autistic representation in my lifetime. The movies and TV shows I feel “seen” in weren’t ever about people directly coded as autistic, but ones that I felt a kinship with. For a long time that was enough.
Seeing actors like Chloe Hayden earn the roles they were born for while changing the face of autism representation proves that, actually, I’ve been begging for scraps all this time. It’s possible to have autistic actors playing characters who are funny, complicated, annoying, sweet. Who aren’t either a burden or “wholesome” or a savant. Who are human, just like us.