Episode 2 - Change the Narrative

Yn ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl Understanding why she thought and why she behaved in the way she did, how to self-advocate, and what she needed from others allowed her to improve her athletic performance drastically, and she rose from the position of spare. to the national team in twenty nineteen, to racing at the Olympic Games in twenty twenty one.

But more importantly, Kara's well being and enjoyment of her sport was revolutionized, and she has never felt as content as she does now. CARA created a community interest company called Neurodiverse Sport, which aims to promote neurodiversity and neuroinclusion in sport, and is shockingly the first organization to do so in the UK.

Chara sees the education and changing perceptions within sports teams and organisations as paramount to neurodivergent athletes gaining the understanding and support they desperately need.

I was performing worse. It was really quite dire, like I couldn't see the end. I was like, where is this going? This is supposed to be helping. It's not helping. I can't see how I can continue like this. Like I had some really, really dark times and yeah, it all came to a bit of a head at it's uh like a national Ergo Championships, but it's in like an arena and It so go going on all that medication seemed to um seemed to heighten all of my like natural autistic tendencies.

And so like I just could not deal with all of the lights and the noise and everything and I just almost like had a meltdown internally. Luckily for me, my husband is is like a rock and he was there to sort of kinda listened to me as I explained or tried to explain what I was feeling, which was quite hard for me. Um, try to make sense of it. And I guess He was kind of the one that through the idea out there and then

Fortunately, like a lot of things kind of fell into place place at once. So he kind of l had listened to a lady speak on the radio about being misdiagnosed with bipolar and having autism and what that looked like. And he had said Oh my god, that's Cara. quite soon after I had this episode where, you know, it got to a point where I just I couldn't just suck it all up and hold it in and it was, you know, it was very outwardly um directed because a lot of the time with my troubles I keep them in.

Whereas this time It was there for everyone to see. And then there was a new performance director that came to GB Rowing, and he was very person-centred. Um, and he had kind of asked the coaches Have we done everything we can for this athlete? Because I think at the time they were trying to bin me.

um seemed a bit more open to uh scrutinizing and asking like what are we doing for this person? And it ended up that I'd I ended up having a conversation at a pub, which is so unusual, kind of away from the training centre with him a a coach that I trusted And then my husband Um and yeah, we kind of I kind of finally, after so many years, got my point across to someone. But I was on the team since 2012 and this was 2019. And like

Normal. Like to feel myself. But I'd never really felt myself before. So it was just all in my life was just degrees of uncomfortability. That's not even a word, but that just made it up. Like I always felt different and misunderstood and th isolated and confused and like I didn't really fit into the world around me and when I tried to be myself it wasn't palatable for anyone and therefore this was just a different type of yeah, uncomfortable living and it was

It was really awful but if my um if you want my honest like uh opinion I didn't want somebody else to take my dream away from me. Like rowing and sport. was the thing that I was good at and the place where I felt comfortable and I had a bit of a rocky home life and it was my second family and I didn't have to use my words and I I wasn't misunderstood. I could just speak through my actions and yeah, I I kind of rose through the ranks myself.

And then yeah, when I got to the national squad and national team and I I started to not thrive and it's I started to like not like that thing that was everything to me, that was my obsession and my rock. Like there was that part of me that was like, no, don't you I'm not letting someone take this away from me. And then I think that combination got me into some really dark places.

Yeah. I I think most people would have probably stepped away. after a month or two of being on lithium and lomotrogen and cotyapin. Um, but I just kept going because It's like it's like a double-edged sword. It's like my strength, but also, yeah. And then I went through something that probably most people would never be like go through. And like when when I finally was seen by the UK Sport Mental Health Panel, which is who that

uh performance director got me in touch with after that conversation. Three of the top psychiatrists and psychologists in the country who know about the s the psychiatry side of it and also the sport side of it. And the lady who ended up working with me very closely was like I cannot believe that you were on lithium and in the national team. Like I have patients that can't get out of bed. Um and like really I I couldn't get out of bed but I did. And I went training and

um to be on that type of medication. How if you could describe what it felt like, because you've got a top psychiatrist saying to you that, you know,

Um, like I walked there and it was everything was on me to make that change in my life and to be something better than the social expectations at the time. And I was the only kid from a state school to go to the junior world championships that year and I took myself to under twenty three's as well. Yeah, I got on I got onto the squad and

Um, and nobody understood me and I what the point I was making was I had so much pride in myself and I completely lost when I got into lithium and this doesn't sound like maybe a lot to a lot of people, but as an athlete, like you're so in tune with your body. I gained like eight kilos, which like I said, doesn't it is a lot for an athlete, like'cause every every gram matters.

Um, and the way that people looked at me as well. Like'cause they don't know what I'm going through, they don't know what I'm taking. So they look at me and they think, Oh, she's a bit fat, she must be lazy, she must be this. And actually like behind the scenes, I'm working harder than everyone because I'm masking and I'm taking this medication and then I'm getting treated like I'm a bit just rubbish. I I'm trying not to use swear words, but um

Looking back now, what do you recognise that you need to enable you to thrive? What kind of environment did you need at that time? What kind of support did you need?

In sport, good performances happen and bad performances happen. And people will try and put it down to something. And if you look different and you're you stick your head out above the parapet, straight away you're gonna be the one that is used as the reason that things go wrong and then I think that was probably the first instance. was in twenty fourteen when I was I was put in the stroke of the age.

And we did a really good performance at Henley Royal, we beat the Australians. But then at the World Championships, um, two of our crew members almost like shouted at us. um, the di the night before the race and the coach just kind of let it happen. They were kind of like there was a bit of a hierarchy in the crew and for me I don't I can't see hierarchy and I'm very values driven and respect driven and that got me and I was so angry and the race the next day was not good.

And I was used as like a scapegoat for that because of my my reaction to people's poor behaviour. If that makes sense. Like it it it doesn't make sense because in my head I'm like, well, people shouldn't be allowed to do that.

you don't wanna have to put energy into being something else, but I don't think I could ever step into that building again and be myself. It's like the the the walls, the the the building, the pictures, the everything, the people. It triggers. masking for me. You know, I've been pulled into rooms before and told that I've got a personality problem. This is in front of like five people. I'm a really young athlete and I I'm literally only doing my best. I'm just

Like I said earlier, like the biggest issues for me was I I need to know why. And I'm very values driven and I'm all about the truth and I can't lie. And that got me into so much trouble. Like those are all they should be good characteristics, but in sport it got me into so much trouble. Like you have to play the game and you have to know how to sugarcoat things.

And that's really rubbish because I thought that sport was probably supposed well, supposed to be the one place where it's literally if you're fast enough, you win and it is not. Because you have to get to the start line first and people who judge you uh on the way that you look and sound and act.

will either give you the go-ahead or not. So yeah, when I was my raw self, I, you know, I I like I said earlier, I came from a council estate, got to the junior worlds, got to the under-23s all on my own, got onto the squad. And then people expected something else of me and I felt like I lost myself.

Do we give her a good partner? No. Like there were times when I sort of I'd rode in a crew with somebody at the World Championships and then the next year everyone comes back and gets to row with each other and then I get to put with like the person the bot the bottom bottom person. Which I I hate to say it'cause I do th everyone has value, but if you're talking about fairness and things, it's like I was not treated fairly at all.

Um and then it just feeds into it feeds into each other. So like you know, it knocks my s I feel rubbish'cause I'm on the medication and it I'm just s savagely tired. I've put on weight, I'm not performing. Um they uh see me not performing and also they know that or they think that I have this mental health issue so they don't treat me very well, they don't give me opportunities and then that has a knock-on effect onto my confidence.

And so I feel bad so I don't perform as well. So and it's literally just like a continuous negative spiral. And there was so many times because it's in my nature to like that I tried to regroup myself and was like make a plan, like all these things, like really try and take it into your own hands and the I really tried to do that so many times, but every time I was just knocked down. Um And this yeah, it just happened it happened for years.

disorder in itself. But um and getting in trouble for certain things and um just feeling different and isolated and thinking in slightly different ways and um and also I have like some sensory sort of issues. So like I would literally rather eat like a bowl of plain rice than something with too much flavour or like with like bright lights and stuff like I guess super sensitive or like certain noises. the blender on or something, it drives me up the wall.

not in control of your environment, your external environment, must have been incredibly challenging for you then. So what have you noticed since you've stepped back? from your sport and you're focusing your efforts on the organisation that you have created, Neurodiverse Sports, and where you're channeling all of this effort

What do you see now then as being an environment in which is nurturing for you? What have you created in the environment in which you're in? What have you discovered is your optimum working environment?

Um I think that was like those couple of years that I rode with the diagnosis was like the first step, but stopping rowing and actually discovering myself. was like the real big step. Um and I am a kan do person and I think when I was rowing it By the end I was like almost very nearly a can't do person, and that's just it's like when you're living in a state of like cognitive dissonance, it's just

Terrible. Um And so yeah, like I did think that I was simple and that I was bit stupid and um it's taken a while but I'm like, you know what, I don't think I am. I know that's but I'm like, I don't think I am stupid and like I I think I am capable and So I can do look and I actually do like to be stimulated like a lot of the time. Like I can work from eight AM to ten PM if I want if I choose to and I'm really enjoying what I'm doing.

I think environments that can be really disabling and doing things that you know aren't right. Like I think mm the biggest thing for me that I've come to realise recently is um the value I have on making sense. And I think f I think I need to explain this, but like If the environment around me and the people around me don't make sense I got I can't I can't deal with it. Like

if if I have to interact with it. So ru uh so uh uh the National Training Centre, the programme didn't make sense for me, the coaches didn't make sense. Like I don't I I'm not afraid to say this right now, like there are some pretty poor coaches out there. Um it wasn't I could see better ways of doing it.

That was like a constant turmoil, anxiety for me, was like knowing that. And it brought me down. And then it almost like the whole thing kind of felt like a s sort of subconscious gaslighting because because the effect it had on me, which was very disabling, I then thought I was the problem and I thought that I was What it made me, which was very disabled, and I'm not. Like in my environment where I can thrive, where I can do what I want.

where I choose and I everything that I touch, I can make it make sense. I'm thriving. I get to ask questions. I get to answer them myself. I get to choose the way I do everything. And And I do it really well because I am a perfectionist and because I have a incredible attention to detail and I'm like a dog with a bone when I want to do something. But It's crazy, like in sport, especially, and I'm sure it's probably similar in business, like managers and bosses.

they feel they have to micromanage everything and I think for somebody who is neurodivergent, I just deal in facts. So I'm like, if I know better than you Like, I'm sorry, I don't I'm really sorry if you're above me in status, but if I know better than you, we should really do it this way. Um That's a that's probably a huge problem for working with someone, and it's why partly why I was like, I don't think that I could ever work for someone. I think I need to work for myself because

I I can't suck it up and keep it in. Like I will always prioritize what is most effective and efficient. And if I see it, it will be on the forefront of my brain. And if you make me ignore it because you have a label of Like I almost like give up internally and like I can't

I really want to explore with you what you're doing with Neurodiverse Sport, where this came from and what you want to see change, what your ambitions are for neurodiverse sport. So Just start with what you've started, um, what it's doing with neurodiverse sport and where the idea came from.

Um, and I would have had a better chance of doing that. Whether the outcome would have been the same, I would have done stuff that I I could have been a lot more proud of and I would have had fun doing it and I I would have made friends and had good experiences. And I didn't.

And I come out of it quite traumatised, as you see today, because as soon as we start talking about lithium and how that feels, for some reason I couldn't talk about it. All I can say is it was absolutely terrible and it made me want to not be on this earth like it was bad. Um And I feel it would be remiss of me to to have those experiences and then to bury my head in the sand. And I don't think I would be able to live with myself. If I did that.

I would feel it's a bit like what I was talking about with when I know something, I have to act on it. When I know something, I have to solve the problem. And if if I can't do that mm then my mental health is severely affected. So I know that if I didn't act And try and solve this problem that I've been sitting on for 10 years. I've been s for ten years I've seen it and I've sucked it up so that I can achieve my goal of racing at the Olympic Games, which I achieved, but it ended up

being quite squashed, I would say. I didn't achieve it in the way that I wanted to. If I yeah, if I didn't act on that and try and solve the problem, I know that the rest of my life would be tarnished because of it. And I do not want any other athlete. And I don't want people in charge to keep getting away with doing a half ass job. Like It's not okay to say this is my mould, and if you fit into it.

then go ahead, maybe we can get some medals together. But if you don't, you get absolutely trashed and run over and ripped apart. I've seen too many athletes that happen to, including me. It should be about your intentions and your substance, and it, you know, anyone should be able to achieve anything. And I think that. Sports people are such role models.

There are no neurodivergent role models in sport. And imagine what an effect it could have on society if if that 15% of the population started seeing people like them in sport achieving the things that as a human race we consider incredible. It bridges everything. Every person in every country and of every ability understands sport. Like Just imagine if there was representation and appreciation. Neurodivergent people they don't come under

para sport and disability sport and at the moment they're not supported in mainstream sport and we need to start supporting them in both to be honest. Um and we need to start representing them, supporting them and and showing them to everyone. And that's what I'm trying to create with Neurodiverse Sport. And the first step was me telling my story. And the second step

is me promoting other athlete stories, but it's really hard to pull them out of the woodwork because they're scared. They're scared of talking up because of the stigma that exists. But I'm really, really trying hard. 안녕!

Like it can be disabling if you don't have the right support environment, but it also can be a strength and a weapon. Um, and so that's the third part is I'm really trying to pull like educational resources together and I've got plans on how I'm gonna start Sort of contacting NGBs and clubs and educating coaches so that when the athletes do start getting the confidence.

to speak out because they've seen other people like them and they feel a bit more of a sense of community, um that they will get the understanding. Um so yeah that

in a a large nutshell what I'm trying to do. Um And that's it.

But nobody knew that girls could have autism. And also they didn't really know what the high functioning kind of autism looked like or called asperges like I know people don't like that label, but that is actually my official diagnosis. yw'r hyn yw'r hyn yw'r hyn yw'r hyn yw'r hyn yw'r hyn yw'r hyn yw'r hyn yw'r hyn yw'r hyn yw'r hyn yw'r hyn yw'r hyn Um and like me they kind of

feel like they had those years stolen or um they can't actually really remember them or their their brain is protecting them, I don't know. So there's a lot of girls reaching out with a similar experience like that. And then there are a lot of people as well who have reached out saying this is great because I've looked for role role models in sport and I haven't seen them.

Um, and it's not just autism. I know this podcast is about autism, but it's it's other neurode neurodivergent conditions as well. Yeah, like you you Google it and there are about ten. it's only people who have been able to speak out in retrospect because they've got a lot of gold medals behind them and and they're seen as oh it's it's acceptable now that they have that but they're they must be one offs and it's like No, they're not one off.

And I would argue that there's probably a higher percentage of sports people that have neurodivergence than probably in the population. And there's also a higher percentage of the population that have neurodivergence than we we we know of because people hide it. And like it's a shame because If people are allowed to be themselves, they're so much happier, they're so much more productive, they can give to others more or at all. Like when you're masking and your energy is sat

barely have enough energy for yourself, let alone what you're doing, let alone other people. Like we're really, as a society, like massively missing out on so many people and their strength.

Looking back to maybe a childhood experience that you had, what would you recognize now as being an autistic experience growing up?

and it became much more internal. When I was younger, it was much more raw and external and I would have meltdowns over nothing, well, apparently over nothing all the time. Like my sister would say to my parents like, I didn't do anything like she just flipped out on one and I would I would her tantrums.

Tantrums I mum p my mum used to like tell the story of didn't want to get on the bus, so I had a tantrum search up. Pick me up by the arm and the leg and get me on the bus. I didn't want to get off the bus. I was on and my grandparents like to talk about when they tried to take me on a train and I just m had a meltdown on the platform and they couldn't take me on the train and you know, I used to plain food and and divide my food up and um I

Um, I'd be obsessed with with drawing and also just like I'd go up park and just run around for like hours at a time on my own and and in my room I would like tidy stuff up but like not clean it. So it was like my my sister used to joke about being like tidy mess, um just ordering, just ordering stuff. Um and like collecting stuff.

Um, and you're creating an environment that is nurturing. But it's interesting, isn't it, of of growing up with those stories of of who you are and how you responded and How did that make you feel?

a bit thick as well. Like they'd uh they don't wanna dob my parents in it, but peop I'd always get taken the mick out of my family for um for being like a slow learner or being a not so intelligent one and, you know, I had to go to a study support group um when I was in year six before secondary school because I was

so slow at catching on. Like I couldn't do my timetables yet. But look at me now, I'm fine. Um and yeah it's it's a real shame because I remember specific times throughout my life where that um narrative has cropped back up and haunted me of like You know, naturally I am a can do person, but yet there's this voice in my head from my childhood that's like, Yeah, but you're stupid, you know, yeah, but you're you're naughty and you should behave yourself. And and it's really suppressed me, I think.

Um, and it's only in the last few years where I'm like kind of starting to try and and not talk to myself like that.

That's what I would say. Just like be yourself. Because you know you what? You're not a bad person. So you don't need to keep taking on the advice that people give you because it's It's usually wrong and your your own voice is usually right. I know that's like the opposite advice of what you should tell people. You should usually tell people to like listen to other people's advice, but like

I do that naturally and I like I love learning. I always ask questions, but fundamentally listen to your heart. No, listen to the voice, your own voice, and don't let it be squashed.

What do you if you had to put a call to action out there of what change you want to see and what you want other people to do? What would you what would your call to action be to anybody who's listening to this podcast?

Everybody's got a story. Everybody is a product of their genetics and their environment and and how they grew up and a combination of things. And if we could all just take like a fraction more time to understand other people, um, when people fell feel heard and understood, they tend to act a lot better. And so I think it would just like encourage a positive

spiral rather than this negative spiral of having closed doors, people don't feel heard, they respond badly, and then it goes the negative way. So I think, yeah, I think that's that's very broad, but Just be curious. Be curious and be open.

It's uh it mainly just my friends from school that I have on Facebook, and I really don't think that it's gonna go anywhere, so probably don't don't go to Facebook. Um please like follow or even take a look at a website. I've got a survey for if you're a neurodivergent athlete, that's on the website and that would be great if people could fill that in.

Um, but you'll find my contact details there. You find me on LinkedIn and Instagram as well. And I'm so keen to learn. So even if you just drop me a message and you don't want me to reply, tell me about your story. If you have a story that you want me to put on a blog, that would also be great. And I can do that in any way. I can write about it. I can interview. I can um Create a real like I created myself.

But yeah, it's all about bringing people together and starting a conversation in this space. And I'm thinking about like having a discussion forum on the website once once there's enough. Buzz about it. I'm so keen for people to be involved. I'm not being picky here. Like everybody's