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Q & A with Chloe Hayden

Chloe Hayden knows that she challenges neurotypical people’s perception of autism, and that’s the point. Chloe wears many hats, or rather, many flower crowns. She’s an actor, motivational speaker, advocate, and content creator, to name a few. With her YouTube videos, Reels, and TikToks Chloe aims to do something radical: enlighten the world about neurodiversity from the perspective of a neurodiverse person.

How do you describe what you do to people when they ask? How do you define your work?

I’m an actor, content creator, advocate and voice for disabilities. I began my journey to give the younger version of myself a voice, but after beginning to hear back from the autism community, I learned just how silenced our voices were. There was no representation, and at the time, no one speaking up – I realised that no one was doing anything about it, so I made it my job to do it.

Where are you from/ where did you grow up?

I currently live just outside of Geelong, Victoria on the land of the Wadawurrung people. But growing up, I lived everywhere, never settling anywhere in particular and going when and where we felt. I’ve lived in about fifteen houses in my life, all across Victoria and Perth!
Now, I live on a beautiful little farm with about 75 animals (horses, chickens, frogs, axolotls, birds… You name it, I own it!) and I absolutely adore it.

Could you tell us a bit about your diagnosis, what it is and how you came to be diagnosed?

I was diagnosed as autistic at thirteen years old after struggling for a long time with school, social inclusion, sensory issues and just about everything else under the sun. Initially, an autism diagnosis was terrifying- my mum started bawling, and I remember asking her if I was dying. In time, we came to the realisation that autism doesn’t change anything, it simply gives a word to something that we’ve known all along.

At twenty-two, I received my ADHD diagnosis, and it was something we celebrated.
Funny how times, and ideas, change.

Do you feel like your brand and your portrayal of yourself on social media challenges peoples perception of autism?

Absolutely! When people think of the word ‘autism’, it’s usually met with images of cis, het, white, middle aged men with an obsession of trains or science, of a young, non-verbal boy who sits in the corner of a room and doesn’t engage with the world. We see a picture in our head that represents the neurotypical community’s ideas of what we’re supposed to be, rather than any form of what autism actually is.

I’m a twenty-three year old, bubbly, flower-crown-wearing-sparkle-wearing girl who’s loud, vibrant and bubbly (and, also absolutely flunked math, and am not at all into trains). People hear I’m autistic and their immediate response is ‘you can’t be autistic!’

Your Reels/TikToks are how I discovered you on Instagram. What drew you to that platform, and how did you get started? 

Honestly, I originally joined tiktok to create silly One Direction videos- I didn’t at all consider it to be a platform that I could use to spark conversation and advocacy. I didn’t even tell any of my original followers about my tiktok content because of how distant I originally wanted to create it from my branding! It wasn’t until I saw a rapping trend blow up that I decided to join in and create a rap about autism- again, just for fun. The video blew up overnight, and when I woke up it was well over five million views, with hundreds of thousands of comments.
It was then that I realised I could use this platform in a way that I wasn’t able to on other platforms, and reach audiences that may otherwise never get an opportunity to learn about autism. Now, a year later, Tiktok is my biggest platform by far, and where I’m able to do the most of my online advocacy!

(but, there is still the occasional One Direction video)

You recently launched a campaign with YouTube and parliament. What inspired you to start your YouTube channel and what does this campaign mean for your platform?

I began YouTube to give a voice to myself, and to make my previous blog posts more accessible to children and their parents who may not be able to sit down and read a lengthy blog post… the rest is history!

The YouTube Australia campaign is such an incredible opportunity, and I had a complete stim-attack when I got the email asking to be involved in it- growing up I was obsessed with watching YouTubers, so to now be apart of the same clan that I used to admire and aspire to be is a bit of a dream come true!

Something you’re very vocal about is the importance of representation. You’ve spoken out against films and TV shows, individuals and companies that have failed to include the representation they claim to preach (Sia’s film Music comes to mind). Why is representation so important? 

Representation is something that is so incredibly vital and important for people of any age, ethnicity, status and group- kids grow up watching their favourite films and TV shows and reading their favourite books and will always gravitate towards the character that they relate most towards… But when you’re growing up as a disabled young girl, those ‘she’s like me!’ characters are so few and far between, and the characters that we may have had, were so heavily stigmatised and so unlike anything that truly represents who we are.

As it is, the media and film industry is incredibly poor when it comes to representing minority groups- particularly autism and other ‘invisible disabilities’ (ADHD, OCD, etc). As an autistic person, representation for us looks like Sheldon Cooper, Rainman, What’s Eating Gilbert Grape, The Good Doctor, Atypical…

The common theme bonding these all together being that they’re all stereotyped, stigmatised, male characters created and played by able bodied, neurotypical people that have no life experience about what real disabled people go through, our lives, our characteristics, and our entire being.

Humans like to take things for face value. ‘Seeing is believing’ sort of thing…. So when ‘representation’ looks like that, it doesn’t only affect the folk that it’s falsely portraying, but also the wider community who now have misconceived views on minority groups, which further secludes and harms us.

Representation isn’t a request, it’s vital.

Why do you think we keep seeing ableism masquerading as concern? (e.g. organisations that are set on ‘ending’ autism)

Simple. People want to try and give a cause and explanation to their ableism, and play it off as ‘care’ and ‘concern’, because they know it’s wrong, or have been customised to believe it’s wrong.

No one outwardly admits to being racist, or homophic, or abelist – instead it’s disguised as ‘oh, but statistically’, and ‘yeah, but they don’t have to be so forward about it,’ and ‘we’re just trying to help them!’

We don’t need a cure, we don’t need to be fixed, we don’t need a mass-autism-extinction. What we need is ableist people to realise that our minds can’t be fixed, nor should they ever be.

Our existence should not be a hindrance to you.

We need people to unlearn their ableism- particularly parents of disabled children.

Can you explain your views on person first language? 

Person first language (they HAVE autism) praises the stereotype that autism is a burden, something that we carry and something that can and should be taken away. You are ultimately saying that the person would better without it, and that it’s the same equivalent to a disease; ie. I have cancer, I have heart disease, I have something that isn’t me. When we are saying ‘autistic person’ we are recognising, affirming and validating that person as an autistic person.
Just as you wouldn’t say to someone they have blackness, they have gayness, they have muslamness- you also wouldn’t say to someone that they’re autistic.

I know many people are taught in uni that they have to use person first under all circumstances, but it’s time to listen to the disabled community.

Person first is built on ableism, identity first is built on pride and understanding.

Can you tell us what lead you to motivational speaking? And what you love about this aspect of your work? 

Like everything I do, it kind of happened naturally and accidentally! After creating Youtube videos for almost a year, I was contacted by a local autism group who asked if I could come and speak to one of their support groups. I was beyond terrified, I’d only been fully verbal for about two years, but it was something I was incredibly passionate about.
My first talk was horrendous… I literally read my own blog post from a crumpled up piece of paper, stumbled over the questions, and had a panic attack in the car on the way home.
But, it was something I was desperate to do again, and knew in my heart that it was something I wanted to continue.

So, I practiced like crazy, my dad helped me come up with a few different important speech topics and learn how to conduct myself in a public talk, and now I’m a five time award winning international public speaker!
Public speaking is my favourite part of what I do by far- I get such a buzz out of being on stage- particularly with high school students who are so involved, eager and ready for whatever is thrown at them, or psychologists who have to unlearn everything they’ve been taught.

I love travelling the world and meeting people, I love sharing my story and educating the world about being different.

I’m so honoured and privileged to be able to do what I do.

We know you’re a super period positive person and we’ve seen you testing out period products on your YouTube channel. Part of Ramona’s mission is to normalise menstruation. So, what is something you like about your period? 

I’m gonna be honest, my period SUCKS. I spend nine days with heavy bleeding and pain so bad it’s sent me to hospital on bad days, and leaves me bed ridden and chucking my guts on good days. Menstruation is normal, and I think continuing to normalise it, is what period positivity is all about. Teaching about it to all genders in school, normalising discussing it, normalise the issues that come with being a period owner, normalising it not being seen as gross or taboo, and learning to love yourself enough to care for yourself on your period- period positivity doesn’t necessarily mean  ‘liking’ it, it means loving yourself, and accepting it in yourself and in society.

Although we are all about the period positivity, we think transparency around the diversity of period struggles is so important. You’ve said that being autistic makes the difficulties of being on your period go up by ten fold, could you elaborate on this for us? 

Sensory issues are incredibly difficult when you’re autistic, and these issues can go up greatly when you’re on your period. As a twelve year old, the changes were terrifying, and I spent my first few periods in an absolute melt down and begging my mum for some sort of medicine that would make it stop.
As I got older and learned how to cope with the change, the overall situation was still something so uncomfortable for me. Period products are uncomfortable and painful, the pain and discomfort of cramps is often heightened in autistic individuals, and the overall experience is one that I still dread, and will likely always continue to.

Period undies as opposed to tampons, cups or pads have been a life saver, as has devices such as the Mira Pro, and learning how vital self care is on those days.

I don’t have to get up and be super-woman, I’m allowed to take time out, binge watch my favourite films, snuggled up in my bed with a cup of chai.

Do you have any upcoming projects we should be looking forward to?

There are some absolutely HUGE projects in the pipeline that will be being announced very soon, but unfortunately can’t say anything about yet!

I always preach how important representation is in the media, and our world is beginning to listen….

Lastly, what are some of your current favourites? Each week on our instagram we share our teams weekly favourites, but we’d like to know what you are loving right now! 

I’m autistic and ADHD, I can’t like anything ‘a little bit’. It’s all or nothing, baby. It’s going to consume my entire existence or I don’t want a bar of it.

As of recent, I’ve binge watched the BBC Sherlock series sixteen times in the past four months (don’t try and do the math on that, I don’t want to hear it) and have become infatuated with the character of Sherlock Holmes.

Olivia Rodrigo, Peach PRC and the Beetlejuice album have become my top three most listened to spotify artists (All of which were discovered within the last five months, and I’ve been a daily spotify listener for seven years. Again, no math please), and my current hyperfixation on Dinosaurs is so intense that I have cried at the mere thought of their existence more times than I would like to admit.

Hannah Forsdike

Hannah is a writer currently living in Melbourne. She enjoys art, reading, feminism, red wine and aesthetic instagram feeds (@hannahtf_).

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