GROWING BOLD AND NEURODIVERSITY

Growing Bold and Neurodiversity

Pete: Welcome to the Grow Bold with Disability Podcast. Brought to you by Feros Care.  A podcast dedicated to smashing stereotypes and talking about the things people with disability, care about most, to help us live bolder, healthier, better-connected lives. I’m journalist Pete Tims

Tristram: and I’m Tristram Peters. I work for disability service directory, Clickability, and I’m a wheelchair user living with spinal muscular atrophy.

Pete: Today’s episode of Grow Bold with disabilities is growing bold and autism and our guest is Chloe Hayden. She’s an award-winning motivational speaker, ready for this. Here we go; actor, performer, author, influencer, content creator and disability rights activist and an advocate. She’s pretty amazing, this young lady. In this episode, we’ll hear how Chloe reached out to an online community after she was diagnosed with autism and ADHD as well at the age of 13 and how that anonymous blog has led to her touching the lives of. Wait for it. Nearly half a billion (with a B) people. Chloe, welcome to grow bold with disability.

Chloe: Thank you so much. I’m so happy to be here.

Tristram: So Chloe, as Pete said in the introduction, you were diagnosed with autism and ADHD at the age of 13. What were some of your early behavioural traits that led to you and your family seeking a diagnosis?

Chloe: So my parents were quite young, and I was also their first child. So, they didn’t have anyone else to look to. Any other people, any other kids to go, yeah, this is what a normal child is meant to look like. At this point Autism also wasn’t very well known. It was very, very stigmatised, so there was nothing to compare me to. There’s nothing to go oh, that person is like her, whether it’s the media or whether it’s a real life contact. It was actually my English teacher in year eight that suggested going and getting some tests due to some of the issues that I was having at school. Um, the first test being, getting CAT scans on my brain test to see if I had an injuries from falling off my horse. Did not have that. Ended up just being autistic. Looking back, I had every symptom under the sun since I was a baby. I had sensory issues, I had three diversions. There was pretty much not a singular thing that I had as a child, that was a normal child trait. Every single one moved back to autism. But it’s still so stigmatised and I know specifically in girls that we just didn’t have that resource until I was older.

Pete:  Well, can you explain? This is a pretty broad spectrum, actually. Just explain what autism is to our listeners.

Chloe: Yes, sure. Okay, So, scientifically, autism is a developmental condition that affects the way that we communicate with people and interact with the world around us. But for me, autism feels like I’ve crash landed on an alien planet where everyone is speaking in a secret code and the rocket scientist back home forgot to give me a handbook on how to understand it. So I have to entirely figure it out by myself. But something I’ve discovered is that just because I feel like I’ve come from it on the planet, first of all doesn’t mean that I was the only one that crash landed here. There was millions of other people just like me that crash landed as well. It also doesn’t mean that I can’t create my own life here in my own community here, my own identity here. I love being autistic and even though it does come with its struggles because of living in a neuro typical world as a neuro divergent person, I genuinely believe it’s also my greatest power.

Tristram: Beautifully said

Pete: Nice analogy. Makes sense.

Tristram: And then, as well as that, the ADHD. So can you explain a ADHD as well?

Chloe: Yes, sure. So similar to autism, ADHD is another developmental condition. That on the surface level and as the way that we have been programmed to see it. First of all, everyone is told that it mainly affects young boys. It isn’t the case. Young boys become older men and they still have a ADHD. If you have ADHD as a child and you don’t have it as an adult, you didn’t have a ADHD. What it actually does it affects us so much deeper than that, and in ways that so many people, including diagnosis themselves very often missing. It affects the way that we see the world around us, it affects our sense of time, it affects, specifically, and probably most importantly, our executive function levels. So the way that we interact the way that we view and perceive things, it’s probably one of the most misunderstood developmental conditions, and its so much more broad and so much more diverse than what we’re being told it is.

Pete: So you mentioned the word developmental there a few times in the explanation for ADHD and autism. Explain that to me. Does that mean that you when someone says the alphabet, you know 26 letters in the alphabet and then putting them together to form a word? Is that where you’re struggling? Or is it comprehension of sentences and so forth?

Chloe: No, so that would probably more in line with dyslexia, which is once again, another type of neurodiversity. As far as my understanding is another neurodevelopmental condition, it just means it’s a condition which is in our brains. It’s a brain thing. And a lot of people will use that as a mislead to go, Oh, well, if it’s in our brain, then you can stop doing it like just be normal. Or people be like, Oh, well, if it’s your brain, we can fix it with invasive therapies. You can’t do that. It’s a part of my brain. It’s a part of my wiring. It’s a part of who I am and it’s another reason why I hate when people say they have autism or they have a disability. I am autistic and I am a disabled person. And that’s not ostracising myself, that’s not casting myself out. I’ve had so many professionals and adults say, Oh, don’t say you’re autistic, You’re so much more than that. It’s like, Yes, I am, but I am an autistic person and I am who I am because I’m autistic. We are who we are because of what we are, and I’m not ashamed of being autistic. I love being autistic, and it’s something that is incredibly important to me, and it is a huge part of my identity, and I think that’s the biggest thing like developmental conditions is a part of who we are, and we need to start taking away that stigma that if we have a disability, it’s inherently bad. We need to take away that disability deficit model and start focusing on more of a social model of disability and start focusing on this is who we are and You know what? That’s really bloody cool.

Tristram: Absolutely, and this is a really powerful message that you convey on your YouTube channel, which has over 42,000 subscribers. You cover so many different topics about autism and ADHD. What are some of the big issues people want to hear about?

Chloe: I mean, when I started the channel like I started this channel specifically for me, like I started because I was 16 when I started the channel and terrified and didn’t know anyone else. That was autistic, a and I did when I was like I was desperately reaching out to the universe. I just needed other people. So I started off just sharing my story and then seeing other people sharing their story back and it was then that I realised just how misunderstood this all is and just how much we need more people that are actually a part of the community rather than psychologists who pretend to know about us because they spent a few years learning about our brain through fancy textbooks. Nothing against psychologists are great people. They diagnosed me, but they don’t know about me as well as I know about me, and they don’t know about autism as well as I know about autism. So I think the biggest thing is just reducing and taking away those stereotypes and stigmas that surround disability both within ourselves, because disabled people can have so much internalised ablism because of the way that the world has perceived and taught us to be. Also taking away those stigmas and stereotypes for the wider community that may not have had personal interactions with autistic people before.

Pete: You’re doing some amazing stuff on there, you’re asking interesting questions and answering a lot of interesting questions. But one of the ones that got me was, let’s talk about Asperger’s and what it is and what how is it different to autism? Now most people, a lot of people can go and listen to this on Chloe’s channel, but let’s get it in a nutshell. Explain to people what that means.

Chloe: Okay, so I was originally diagnosed with Asperger’s when I was 13. That was my diagnosis. However, Asperger’s is no longer something that is part of the DSM- 5 which is part of the criteria that we use to diagnose mental health disabilities, developmental disorders. Asperger’s in itself is a name that is directly derived from a man named Hans Asperger who, to be sure, was a Nazi who murdered disabled children during World War Two. So not a good man, not something that we want to be associated with. Again I’ve got a very big video and several videos on tiktok and YouTube about this man and about Asperger’s and why we need to stop using the term Asperger’s. It also, I feel like if people that use the term Asperger’s and obviously there’s a difference between people that are using it because they don’t know any better because they haven’t been taught any further and people that are using it because, like, I don’t want to be known as autistic, that’s bad. That’s weird. I don’t want to be seen as autistic because of the stigma that we have around disability and autism. And Asperger’s doesn’t inherently have that same label. People hear Asperger’s and they think, Oh, you’re some crazy savant genius who just happens to may not be great at talking to people, but it’s all autism. Asperger’s does not exist. High functioning and low functioning Autism doesn’t exist. It’s simply autism. The way that I best describe it is it’s like a colour palette, every single one of us, is autistic. It’s a different colour and this colour palette, and my colour might be yellow and someone else’s colour might be blue. But neither is a more or less colour than another colour. We’re all just a different colour. Asperger’s itself doesn’t exist. The man who is Hans Asperger is the most disgraceful, disgusting human being to ever exist, and it’s not a thing that we need to be using anymore. We have better terms that we can use to describe the way that our brains work.

Pete: Great. Well, we want to get that message across. That’s great.

Tristram: And you also, turn your Instagram, you’ve got over 68,000 followers. But you also recently posted you’ve been diagnosed with, I’m going to test my pronunciation here, Postural orthostatic tachycardia syndrome.

Chloe: Brilliant, good job.

Tristram: Thank you. Do you mind explaining what that is and how that also affects you?

Chloe: Yeah, of course. I swear to god these diagnoses just keep coming. I’ve known that I’ve been neurodivergent since I was 12 now, and it’s something I’ve come to terms with and I’m proud of. I’m proud of my neurodivergent mind and I love my neurodivergent mind. Speaking personally about chronic illness and about physical health has never something that I thought that I would have to do. I never thought that it was something which would be a part of my own story. Postural I was diagnosed with this year, and it’s a disorder of the autonomy, that the – I can’t speak man -autonomic nervous system. If anyone’s a doctor or whatever it is listening to this don’t. Basically, it’s a part of our body that controls essential bodily functions like our heart rate or breathing our blood pressure, sleep cycles, temperature control, all that sort of stuff. Basically, if you do all that without thinking, your nervous system is to thank for it. It’s also a condition that means that while a healthy person’s nervous system is going to activate several responses and have blood vessels contract to ensure that a sufficient amount of blood reaches the brain. Mine just plain and simply cannot be bothered. It means that my body has constant tachycardia, meaning heart rates above 100 bpm. Chronic fatigue, low blood pressure, migraines, palpitations, brain fog and memory issues, muscle pain, fainting, dizzy spells, nausea, shakiness, blurred visions, struggles with physical activity. I’m like, smiling while I’m saying all of this, but like, that’s, like, some pretty like heck off symptoms hey.

Pete:  Yea it’s a good list.

Chloe: Thank you. I thought so, and that’s just mine like the list goes on for anyone else. It basically just means that my body is not in connect with my mind, which makes sense because none of me is in connect with anything else. Basically, just means that I have to manage myself. I’m taking medication a few times a day to make sure that my heart rate slows down and learn how to take a bloody chill pill. It means that I have to drink three litres Hydrolytes a day, increase my salt intake and just basically look after myself. And in doing so, I’ve had to learn, this to take away my stimga, the mis-stigma of taking medication, which I think so many people have. So many people think that if we take medication, it means that we’re weak or that we need to try harder. We have the right to take medication unashamedly, if it’s something that’s going to benefit our lives and also learn how to love this part of my body, which I never thought that I would have to.

Pete:  Yeah nice. Now I did see in a recent episode back in Feb, I think it was of this year titled, ‘So Your kids just being diagnosed with autism, here’s what to do now.’ People should head to Chloe’s YouTube channel and check this out because it’s pretty amazing. All the links are in today’s show, but in a nutshell, can you say what should parents do when their kid has been diagnosed with autism? And I must point out, I love the bit where you say speak to your child, don’t speak over your child.

Chloe: Honestly, that’s like the biggest point. I think the biggest thing with disabled parents and parents of kids that are different is some of them do tend to speak over us, and will speak for us as if we don’t have our own voices, and that’s honestly the worst thing that you can possibly do. Your child is your child, and they have always been your child. Just because there is now a condition which probably has always been there specifically in terms of autism, ADHD, other neuro developmental things, it doesn’t mean that anything is different. Love your child, and if your child needs help, give it to them. but don’t speak over your child. Don’t stop them from doing things which they know they can do. Just be a parent and be there for them when they need it. I think there’s probably a lot more in that video which I can’t remember off the top of my head now, but I think that’s the biggest thing is just understand that your child is who they’re supposed to be and don’t try and change them. Oh, my God. I know that I said I was finished this question, but the biggest thing,

Pete:  Nah go for it

Chloe: Okay, good, because I’m going to rant on this one, man. The biggest thing that like bugs me is parents are like, Oh, we have to change your child, we have to put our child in like, 50 therapy sessions a week. Oh, my God, Your kid does not need that man. Okay, so ABA therapy is probably well I’ve spoken about this multiple times. I think anyone that has heard my voice once knows that I have so much disdain for this thing. If you try to change your child’s brain, if you try to change your child’s outlook on life, you try to go my kids autistic, but I’m going to put them in therapy system so other people don’t know they’re autistic. Your child is still autistic, your child is still disabled. Now they just have to mask that, and are going to suffer so much greatly, so much further through their life just because you refuse to accept them for who they are. The only way that a kid can learn how to accept who they are is by looking to their parents and knowing their parents love them for who they are as well. Anyway, rant over.

Pete:  Nice, beautiful.

Tristram: Any time you want to [rant]. Speaking of being a child, then how was high school for you? And how did your peers embrace you? And how was at that time in your life?

Chloe: Yeah, So I started getting home schooled when I was in year eight, pretty much the same day that I got my autism diagnosis. The psychologist that I went and told my parents, if your child stays in school for another day, you’re not going to have a child any longer. So I started getting home-schooled that same day, and almost immediately my entire life turned around. School was the pits for me. I was bullied both mentally and physically, every single day since kindergarten, up until year eight. I became a shell of the person that I once was. I used to be the most bubbly, happy, vibrant kid and by the time I got my diagnosis, I was mute. I couldn’t speak to anyone. I was terrified. I couldn’t leave my house. I was fainting almost daily. I was having panic attacks multiple times a day. I was the most terrified child that you would ever meet. Getting home-schooled and being in an environment where I was allowed to not only allowed to be who I was, but a thrived in who I was the biggest change for me. I learned that who I was, was okay and that the people around me loved me for who I was. I was able to learn in a way that made sense to me. I think the biggest thing with schools is that we have an education system, which is a box or a tiny circle, and most kids aren’t a tiny circle shape they are a whole different shape altogether, and they’re never going to be able to fit through that through that shape that has been given to them. Therefore, there are so many kids who are incredibly bright and incredibly smart and incredibly willing and ready to learn who are being left out. 97% of autistic children are failed by the education system, and that is no fault of the autistic child themselves. That is entirely the fault of the education system that we have built ourselves around. We need to start giving these kids that are disadvantaged simply because the education system refuses to include them, and showcase that they can learn and that we have the ability to educate and to learn in ways that make sense to us. As soon as I learned that, my entire life changed around.

Pete: So what did you suggest? Because not everyone can be at home schooled. Is a suggestion that more acceptance within the existing schools? Or do you think that people with autism and I don’t want to put them into a specific school? Or is it better for them to be together and to thrive in that environment? Or does it work in the public system, if you know what I mean?

Chloe: I think it entirely depends. I think that we really, really need to reshape our entire education system regardless. Currently, our education system is built to create people that can work in a specific thing to be an employee for someone. We’re not teaching kids how to be their own people. We’re not teaching kids how to have their own business. We’re not teaching kids how to thrive as an individual. We’re teaching them to be an ant in a colony, it’s so it’s not just failing autistic kids. It’s failing most children. If you’re not this teeny tiny percentage of kids which the system is built for, then it’s failing you. So first of all, we need to completely overlook the way that our education system is run. We don’t expect all adults to work the same jobs and to learn the same way and to live the same lifestyle. I’m an actor and I’m an advocate, if I tried to work in an office job, absolutely could not do that. And if you put someone who does work in an office job and thrives like that into my environment, they would explode. You can’t expect those two people to work in the same thing. So why are expecting kids in the most vulnerable stages of developing who they are to work in that same way? It doesn’t make any sense. So first of all, we need to completely rethink the way that we have the education system and kids that are disabled kids, that are neuro divergent kids that aren’t thriving in this current system, home-schooling shouldn’t be the only option. That it shouldn’t be, Oh, well, we have to remove our kids entirely. We need to create a system where kids are allowed to be their individual selves at the moment, having break rooms where autistic kids can go when the lights get too bright and people get too noisy. And if there’s too much going on in their heads to allow kids to have noise cancelling headphones or blankets or fidget toys or whatever it is. Just allow kids to be themselves and to learn the ways that make sense to them.

Tristram: Yeah, well spoken. We’ve spoken about some of your amazing achievements and your resume in terms of acting being activist, content creator. Was this always the plan for you post school? Or how is this progress as you’ve got older? What did you want to do when you when you left school?

Chloe: Honestly, when I was in school, I wasn’t expecting to really be here for a whole lot of time. After I left school, I was like, the world isn’t created for me. What’s my point in being here? I have always loved acting and performing. Being autistic, masking and having to put in a faces, and that I’ve always had to do anyway so going into career, where I did get perform and actor just made sense to me because I’ve done it myself in my entire life anyway. But ultimately, when I was in school and when I was in high school and people ask me what I wanted to do, I just said I wanted to be happy. I just wanted to just feel comfortable in who I was and I am absolutely doing that now. As I did get older, acting and performing has always been something which I loved so deeply. I used to tell my mom when I was younger, I want to be an actor, and this is when I was mute to everyone except my family. She was like babe, you can’t even speak. So unless you want to be a mime, it’s not happening. But she even with that, she encouraged me so deeply with everything that I wanted to do, even if I sucked it. And that’s probably a point from before about what parents can do and the child gets a diagnosis, encourage your kids in whatever it is, even if they suck at it. I cannot even walk in a straight line without falling over, and I was like, I want to be a dancer. My mom was like, All right, let’s go and she got me into every different dance school and I had dance classes every day, and I loved it. I sucked at it. It was awful, but I loved it, and I felt like I belonged somewhere. Being able to do that and being able to have parents that just genuinely encouraged me with everything that I loved and everything that I wanted to be is I think, why I’m able to be so confident in who I am now as well.

Pete: It’s great to have that confidence, but also you’re a strong advocate again in your YouTube channels and so forth for pushing back against people say that you can’t do things as well. What are some of the things that you’ve been told by a society that you can’t do?

Chloe: Oh my God, everything, like literally there’s a singular thing, and I’ve been told that I can’t do that. Being an actor, I’ve been told most times you can’t be an actor because you don’t understand facial expression. So you can’t be an actor because this that and the other I’ve been told that I’ve been told I can’t be a girl if I’m autistic. Someone [was] like, You can’t be autistic because you’re a woman. I’m like, Okay, fair enough. See you later. I’ve been told that, I can’t be autistic because of how I dress or because I wear makeup or because I’m emotional, like I show emotions like a human being, and they’re like, Sorry, autistic people can’t do that. Uh, sorry. You’re a scam. So I’ve been told multiple things. And you know what? It’s all just a showcasing of how stereotype and stigmatised this is specifically within women.

Pete: It’s pretty horrendous.

Tristram: Another topic that you you’ve spoken about is this call to stop infantilising autistic people. And this is something that frustrates me, is as a disabled man myself. I’m a power chair user and I get infantilising all of the time. Have you seen this issue play out generally? How do we stop this notion that we can’t do things? How do we change these attitudes?

Chloe: I think as soon as we stop letting other people speak for us and actual disabled people of the community to speak for ourselves. That’s when we can start to actually create the difference in the amount of people, including doctors and psychologists and teachers, that I will be speaking to, and they will speak to me like I’m a normal functioning adult. Then as soon as conversation comes up that I’m autistic, their entire attitude towards me changes. They’ll start baby talking me. They’ll start using simple words. They’ll start speaking to me as if I’m an entirely different human to who I was, Two seconds beforehand. I’ve had people in my life who know that I’m autistic and they have held my hand when we’re crossing the road, or they’ll praise me for doing the most basic of tasks. I’ve had one person who came to me came with me to a school talk I was doing, and they came up and stood on stage with me and, held my hand as if I needed that support. It’s so ridiculous, and it’s again, it stems from infantilise. Well I don’t know where this one stems from because no autism diagnostic criteria says they may be a literal child in the body of a 30 year old person or whatever. You know, I don’t know where this comes from and it’s not just autism. Like I have a friend who has acute dysplasia? and I’ll go out with him somewhere and people talk to him like he’s four years old and it’s ridiculous. The entire idea of infantilising people that are disabled simply because they’re different to you, it’s such a bizarre concept for me, and I think we need to start speaking out boldly about who we are and not letting other people take our voices. And I think that’s the issue. For so many years, someone will say something about us, or do something to us, and we’re like, I can’t do anything about this, so I’m simply going to suck it up and accept it. It’s 2021 man. This world was made for all of us. We don’t need to deal with that anymore.

Pete: Yeah, Fair call, I agree. I think the most important thing you said there is the disabled community needs to step up. I think that’s so true. We can’t let the able bodied and this is in inverted commas, people sort of speak for you. I think it’s very important.

Now we’re going to wrap it up pretty soon, Chloe, but I want to ask one final question now. You said when you left school, you know, you didn’t even know if you were going to. How much further you’re going to move forward? What does the future hold for you now? At 24 I think. Is that right? 24.

Chloe: That’s right. My life feels like an absolute fairy tale. Now I often compare our lives to books into fairy tales and how we all have our once upon a time now adventure stage, now dragon fighting stages. I’m still in that adventure stage. I’m still in the dragon fighting stage, but I can see my happily ever after, and it is so freaking cool, man. If I could go back and have a conversation with 10 year old Chloe who was so terrified of who she was and so terrified of the world around her, she would absolutely not believe. First of all, she wouldn’t speak to me. Second of all, she absolutely would not believe. I have the most amazing things coming up. Things that I’m so excited to start talking about. But it’s Yeah, my life feels like an absolute occasion, and I’m rising to every single second of it.

Pete: Nice work.

Tristram: Beautiful. And Chloe we like to wrap up each episode with the question. What does living a bold life mean to you?

Chloe: I think living a bold life to me means being boldly, proudly, unashamedly, myself and not letting anyone tell me otherwise and understand that who I am is exactly who I’m supposed to be.

Pete: So true. Chloe, thank you so much for joining us here today on Grow Bold with Disability. The podcast brought to you by Faros Care and our listeners can find out more about Chloe. Check out her on YouTube, check out our her instagram. They’re both pretty amazing, especially the YouTube stuff. And you can follow her journey in the links that are provided in today’s episode show notes. Chloe Hayden. Thank you so much. That was an adventure.

Chloe: Thank you so much.

This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia and the Australian Capital Territory. Feros care is a people care organization committed to helping people live bolder lives. We call it Growing Bold. For over 30 years, Feros has been making it real for both older Australians and those living with disability. To find out more head to www.feroscare.com.au

The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.