If Chloé Hayden had a magic wand she would change how the world understands disability.
When we think of disability we think of it through a medical model,” she says. “As in, if you’re disabled, it’s your problem. But if we understand it through a social model, disability is seen as another human being simply existing in the form that they are, and the social barriers facing us are the main factors disabling people.
“We need to recognise and respect differences, seeing it simply as the result of normal variations of the human genome, and accommodate, respect and celebrate it the same way you would with any human.”
It’s easy to imagine Hayden with a magic wand. Her writing abounds with Disney analogies and her own story reads like a fairy tale. Age 25, she is an Australian actor, author and disability advocate.
On Instagram and TikTok she presents as a burst of rainbow sunshine, describing herself as: “Crocodile Dundee but autistic + ADHD + chronically ill.”
In November last year, Hayden was voted Rising Star at Australia’s Marie Claire Women of the Year awards. In December she won the country’s AACTA Audience Choice Award for Best Actress for her role as Quinni in the Netflix series Heartbreak High. Her performance was flagged as one of the first instances of an autistic actor playing an autistic character on television.
She’s also an engaging and articulate writer. Her first book, last year’s Different, Not Less: A neurodivergent’s guide to embracing your true self and finding your happily ever after, is a practical field guide to growing up autistic.
Part zingy memoir, part informed analysis, it’s the book Hayden wishes she’d had when she was diagnosed at the age of 13 and is required reading for anyone in the same boat. It has been nominated for the Favourite Australian Book Award; the UK and Irish edition came out this month and Hayden is on her way here to give a series of seminars in February.
We meet on Zoom. She’s at her family home in Victoria, south-eastern Australia. It’s a summer evening there, a winter morning here. She’s sitting cross-legged amid cushions, surrounded by flowers and Squishmallows. Many of these cute, amorphous soft toys were given to her by fans at her book signings.
Her conversation is intelligent, focused and precise. She’s not big on eye contact and doesn’t pretend to be. Accepting her autism, without trying to hide it, is an intrinsic part of who she is.
In Different, Not Less, she writes: “We need to reject the idea that autism, ADHD and any other form of neurodiversity can and should be cured, advocating instead to celebrate the difference in neurodiversity and all forms of communication and self-expression.”
Others have said this, but Hayden has more outreach than most. With 203,000 followers on Instagram and almost 700,000 on TikTok, she’s a role model for many.
Hayden is Australian, born and bred, but identifies as Irish. Her father, Ronnie Hayden, comes from Rathfarnham in Dublin. She has an Irish grandmother, Irish cousins, and many memories of family holidays in Ireland.
Last year, her Saint Patrick’s Day Insta post featured archival footage of a younger Chloé singing ‘Molly Malone’. She describes learning to speak Irish as a child, and remembers her father singing old Irish songs and reading Irish poetry to her at bedtime.
“My dad came to Australia on a whim when he was 20,” she says. “He landed in Melbourne in the middle of winter with no money and only a few pairs of shorts because he thought Australia was a hot country. He met my mum at a bar they were both working in.
“Within a week they were living together. Now he’s the lead organiser of the Australian Workers’ Union.”
Her mother, Sarah Hayden, is a social worker. Chloé was born in July 1997. She has four younger siblings: two biological, two adopted. I ask if autism runs in her family.
“Neither of my parents is officially diagnosed as autistic, but both have very strong expectations that they are either autistic or ADHD.”
Animals are important to her. Chloé’s auxiliary family members include a three-legged rescue cat called Beatrix, an Australian shepherd dog named Matilda, two Australian green tree frogs called Anura and Evangeline, four horses named Princess, Marlea, Ahuli and Moo, and an axolotl named Jigglypuff. One of the frogs, Anura, plays a cameo role in Heartbreak High.
Different, Not Less is the story of Chloé’s journey through troubled waters. She describes a well-resourced childhood with caring parents. She was different, but little girls are expected to be quirky.
“I would flap my hands when I got excited, rock when I was upset, walk on my toes when I felt anxious and repeat sounds when I was overwhelmed.
“No one ever mentioned it within my family, because it was just Chloé. That was just how I was. My parents often said I looked like a little fairy. School, though, was a whole new ball game. Moving even a finger in a way that wasn’t deemed the perfect normal would cause excessive bullying – both physical and emotional.”
Rocking, flapping, or making repetitive noises are collectively known as stimming. Everybody does this to a certain extent – clicking a pen is a common example – but autistic stims are more obvious.
Even though stimming is helpful, expressive and calming, autistic children are often taught to suppress these movements because they make other people feel uncomfortable.
Society accepts difference in children, on the understanding that these differences will fade, but Hayden’s differences became more obvious as she grew older and went to school. It was not a good experience. She writes in Different, Not Less: “As a teenager, ‘different’ is synonymous with social reject, outcast, weirdo, loser… you get the point. It’s social suicide.”
Her autism diagnosis didn’t help, largely due to lack of informed support. She read fear-mongering articles claiming a life with autism destroyed the lives of others and was barely a life at all. “I wasn’t just Chloé: weird, quirky, different. I was Chloé: weirdly, devastatingly, ruined by autism.”
Friendless, apart from her beloved ponies, she was ostracised, bullied and shamed by her peers.
There were other difficulties too including an eating disorder from which she believes she will never fully recover, and a diagnosis, at the age of 23, with postural orthostatic tachycardia syndrome (POTS) a chronic illness and disorder of the autonomic nervous system.
“My body uses about three times more energy than that of a healthy person because my heart beats the same number of times in one day that a healthy person’s does in three.” The previous year she’d been diagnosed with attention-deficit hyperactivity disorder (ADHD).
This time, instead of being frightened by a new diagnosis, she understood that it offered her an opportunity to understand and care for a mind with particular needs.
“Now I know that I’m not Chloé: weirdly, devastatingly, ruined by autism. I am Chloé: weirdly, wonderfully, beautifully autistic and ADHD.”
Hayden wears her diagnoses with pride. In doing so, she opens the door for others to follow suit.
“I do have a lot of diagnosed labels,” she admits. “Human label things. It’s what they do. Before I had these labels, I had the ones that other people gave me. Weird. Strange. Doesn’t belong. When people complain about labels, they’re not pissed off with the labels. They’re pissed off that you’ve taken away their ability to label you.”
While many autistic people see autism as a difference, rather than a disability, Chloé identifies as disabled.
“People are afraid of the label because of stigma. When I identify as disabled, people will say ‘don’t feel bad about yourself’ or ‘don’t say that about yourself.’ At the end of the day, autism is a disability because the world is not set up for autistic people.
“But I’m a disabled human and that’s OK. By reclaiming disability, other young disabled people are able to look at the way I view disability and be proud of being disabled rather than to hate it.”
Eventually she allowed herself to become a more authentic version of her autistic self. “Fun fact,” she writes. “You can be a successful, functioning member of society while flapping your hands.”
Sometimes there’s pushback. In the world of social media, trolling comes with the territory. There are people with stereotypical views on autism and disability who refuse to believe she’s autistic.
“I was a name on social media before I was a name in acting and I was talking about something that’s still quite taboo,” she says. “When some people see me in the makeup and the fancy dresses, they say I’m faking it and that I don’t look autistic.”
She makes an effort to talk about some of the not-so-good moments, including a recent post about surgery for endometriosis, but acknowledges that social media is intrinsically a highlight reel.
“I have days where I come home and crash and watch kids’ TV shows. I have non-verbal days. I have days that I can’t even look after myself and I need my parents and my partner to do everything for me. But nobody wants a camera in their face when they’re experiencing that.”
Playing Quinni in Heartbreak High, the hit Australian comedy-drama reboot of a 1990s series, was a breakout role for her.
“When I first saw the casting brief, Quinni was already defined as neurodivergent,” she says. “That caught my eye.”
There’s a huge contrast between Quinni, an empowered autistic teen, and Chloé’s lived experience.
“Quinni is everything that I wish I was when I was 16. She validates herself so much more than I did at that age. She knows who she is in the world and she has friends who understand her. It was wonderful to relive my teenage years through a person with such a wonderful support network.”
In the show, there’s a scene where Quinni passes a note to her friend Darren, a queer non-binary student played by James Majoos. The note reads: “Am I too much?” Darren replies: “Yes, but you’re my too much.”
It’s an exchange that strikes a chord with Chloé.
“As a teenager, I remember asking that question myself,” she says. “My real-life friends said yes, I was too much. And then they dumped me.”
Full disclosure: I’m a late-diagnosed autistic writer and I’ve been a Chloé Hayden fan for years. Possibly I see her as an idealised version of my younger self. I’m delighted for her success, but also a little concerned for her.
To be so much in the public eye is tough on anyone; for an autistic person it’s harder still. Burnout is always a hazard.
“I’m still working out how to manage it,” she says. “I’m learning to say yes to the things that I love and to say no to the things that don’t bring me joy.”
She ended the year by saying yes one more time. In December she became engaged to Dylan Rohan, a data scientist whose family come from Dingle. The pair met online during the Covid-19 lockdown.
“I used to think I’d never be able to have a partner or get married. My parents said that about me – not in a bad way – and I said that about myself.
“We live in a society that has a very stereotypical way of viewing marriage and I’m never going to be a typical wife or partner.
“But I don’t have to change the person that I am to have love. Finding someone that will love all sides of you and not just the masked version is so important, to find people that love you for who you really are.”
Chloé Hayden will speaker at the AsIAm National Autism Conference at the Grand Hotel Malahide on Saturday, February 4 ; see asiam.ie
Her ASD seminar, ‘Different, Not Less with Chloé Hayden’, takes place at School of the Holy Spirit, Callan Road, Kilkenny on February 7, from 7-9pm; linktr.ee/Chloeshayden
‘Different, Not Less’ is published by Murdoch Books, €17, and out now