If you’d like to listen to or watch our interview with Charli, the episode is available on YouTube, Spotify, and Apple Podcasts.
- Lived Experience Advocacy: Charli emphasized the importance of lived experience advocacy, highlighting how understanding the living experiences of neurodivergent folks is crucial for meaningful change.
- Neuroinclusion in the UK: Charli discussed the current state of neurodiversity acceptance in the UK, mentioning that while there's a perception of progress, there's still a long way to go, particularly in terms of understanding and accommodating diverse neurodivergent and disabled experiences.
- Tokenism and External Perceptions: Charli highlighted the tokenism experienced by many neurodivergent folks, expressing frustration about how individuals are often seen as commodities rather than as whole people. External perceptions tend to reduce neurodivergent individuals to specific traits or characteristics, which can be dehumanizing and disempowering.
- Motivation and Community: Charli shared the challenges of advocacy work, emphasizing the motivation they gain from seeing the positive impact her work has on the community and encouraging budding activists to persevere in their efforts.
Beaux: Hi, and welcome to Brainstorm Changemakers by Tiimo.In this series, we're talking to experts, activists, and movers who are shaking things up in the neurodivergent space.
My name is Beaux, my pronouns are they/them and I'm the Inclusion and Belonging Lead at Tiimo, a Danish neuroinclusion company that gives folks the planning power to take charge of their daily lives.
Today, I have with me Charlie Clement. Charlie is an activist, speaker, writer, creator, and lived experience expert. They are proudly Autistic, ADHD, dyspraxic, and chronically ill and are writing a book on the intersection of Autism and chronic illness that’ll be out in December. Hi, Charlie. Welcome. We are so happy to have you.
To start us off, why don't you just tell us a little bit about yourself?
Charli: Yeah, um. I’m Charli. I'm multiply neurodivergent, disabled, LGBTQ+ activist, writer, speaker, creator. I mean, I think, you know, I all of the things, I guess, but I also work in the health care and charity sectors here in the UK on improving psychiatric care and reducing admissions of Autistic people to psychiatric units, particularly focusing on things like human rights and sensory environments and things in those spaces as well.
And I guess my first book comes out in December, which is still a bit weird to say, but it's called All Tangled Up in Autism a Chronic Illness. It's out on the 21st of December with Jessica Kingsley. I haven't really said that very many times yet, so. But yeah, that’s kind fo me I guess.
Beaux: Gorgeous. Everybody preorder right now. I'm so excited for your book, but, you know, diving a bit into your background, You know, growing up, were there any big moments that kind of helped you discover and maybe later understand your neurodivergence?
Charli: I’m an interesting case, I think, because of the discovery of my neurodivergence, my Autism was actually kind of a shock, actually. Like, it should have been really abundantly clear my entire childhood. Like, now we look back and I’m like oh “reason number 1200 why someone should’ve picked it up” uh, obviously teachers, professionals around me, if they'd had proper education on it, they would have known. But they didn't. But when I was ten, we started to seek advice for my physical health. I was having a lot of pain that I for several years before I didn't realize other people didn't have.
So that was also really interesting. But I was being pushed around the system for that. And then at 14, I started having panic attacks that kind of started my journey with my mental health and my neurodivergence and so I was in the process of being referred to our CAMHS Child and Adolescent mental health services here. And I was seeing someone again for my, something about my joints, like just before I got into that service and they basically went, “So you walk on your toes and you're going to see CaMHS, so are you Autistic then?
And like, obviously it was like a really big shock for us at the time, and he really shouldn't of put it that way, but it turned out he was right.
I mean I yeah, I kind of I always knew I was kind of something different about me like most of us do. And we're kind of unidentified, I was, like, bullied really heavily. And I lost my best friend at the age of ten, and I remember grieving really differently to everyone else. But I think like a lot of us, I kind of was just like, I'm like broken or weird or whatever else. And so there was like, no understanding that this could be something like fundamentally different wiring, I guess.
My other diagnoses - so my dyspraxia, my ADHD kind of came later, kind of as part of me being part of the community and then picking up things for myself. But I think I felt much more able to process those like my ADHD, I think probably should have been picked up when my Autism was because I was kind of turning around to doctors and going like, I have six different thoughts at once.
And they were like, it's just Autism-associated anxiety. And I was like, okay.
And then, during lockdown when I was like, because I was a student at the time and I just didn't do any of my online lectures because they weren't put into a specific slot of time. So I just didn't do them. And I kept just sitting at my desk for like 6 hours at a time being unable to do anything and as a yeah, I'm one of the stereotypes.
TikTok, help me realize it. So take from that what you will. But yeah, so kind of my Autism was a bit more of like a quite sudden like this is a thing whereas my other stuff was very much me kind of working out who I was and like unpicking all of that, I guess.
Beaux: Yeah, totally. So you talked a bit about your experience with being bullied, and I'm just wondering what growing up in the British school system as a neurodivergent kid was like?
Charli: I think the British school system is pretty brutal for anyone. I think to be honest, I think it very much is a survival of the fittest kind of a place to be. But certainly being neurodivergent and particularly pre-identification, I think like I was kind of bullied all through primary school and then I went onto a girls grammar school.
So there's a lot of pressure there and there was a lot of like I really I really believed that because all of the girls at that school would be academic, that they'd all be like me. I hadn't figured out at this point that I was like fundamentally different on a lot of levels. I kind of just thought it was because like I was academic in a way, the other girls and boys, to be fair, but like that other people weren't. And I kind of, just, I kind of put it down to that. Like oh they’ll all be like me um spoiler alert they really weren’t um and so just after, a few months after I started having panic attacks, they that that school did not deal well with them. So I moved school and this was kind of in the time that we just kind of had this notion that it was probably something bigger and that I might be Autistic.
So I was doing a lot of processing at the time where I was trying to like, get into this new environment, but was really lucky that I made some really good friends at that school. But I think like I was always very, very into my schoolwork and I think I so desperately wanted to be liked by anyone for anything.And that was the thing that I could do. Like I could be good at something like schoolwork was something that I could be good at. So it was like really, it was much easier to kind of put all my focus on that rather than kind of dealing with the school system and like the people within it.
But I think it's also like it was much easier to focus on something that had a structure like my brain could really thrive on like instructions and routine and external accountability because like my dyspraxia, I struggled so badly in things like cooking and woodwork and like PE and all of that sort of stuff.
And I was often like told off a lot in those lessons or like everyone, like the teachers just seemed exasperated with me all the time. And I think my self-esteem, like, really flagged from that. Like, I don't think that that helped that notion of me being like, like I just didn't really have any self-esteem growing up at all. And I think actually when you look at it like teachers really had a role in that, but I don't think you necessarily pick up on at the time.
Beaux: Yeah. God. Yeah, I. That resonates for sure. So how does existing at the intersection of neurodivergence and chronic illness inform your advocacy work?
Charli: It’s a really interesting place to sit because there's a lot of like clashes and things that like intertwine. And I think so in the book I talk about like all sorts of things, like I talk about healthcare, I talk about living life, I talk about medical misogyny and ableism because it's it's a it's an intersection that exists internally in your brain and your body, but it also exists when interacting with society.
And I personally find that much of society is really only set up to accommodate like one disability at a time or like one one kind of disability a time. So like for years when I was kind of getting all these different conditions like labeled and diagnosed and everything, I was like handed a lot of leaflets about what that would mean for me or like how to manage it, and I would just be like this this doesn't make sense.
Like, this just doesn't work for me. Like this doesn't, this doesn't align with my experience. Like I don't feel pain in the same way as other people. I really struggle to describe it. Like with ADHD, it's all about like high exercise that I can't do and like my need for routine is constantly battling with like chronic fatigue and needing to rest and like all of that.
So it's like a really hard place to sit where a lot of the advice for each thing is very much like siloed in a way that is really not helpful. So I think it's taken me a really long time to and to be honest, I'm still still doing it, trying to find those like middle grounds and the support that actually works whilst living at that intersection.
But it's a much more common intersection than we give credit for. Like it's actually super, super common, like most people who are Autistic are not just Autistic, but we still don't really give that enough credit in wider society because there's only there's not that much research about it, like it's still becoming more highly researched. So I think people just kind of see it as this not very common thing when actually like it's super, super common.
Beaux: Where have you found kind of resources that actually work for you and/or community that kind of has similar lived experiences?
Charli: I think that was. I mean, so I kind of grew up within the disabled community, like the disabled community almost raised me, to be honest. Like I've been involved in it since I was like 13, 14, since I started to understand who I was.
And it's very much been a process of lived experience that has taught me that, like, I've never it's why I wrote the book because I just didn't feel like there was any like resource, like one resource that you could go to for that. Like I was basically taught how to manage these things by Twitter, essentially, like by these kind of like very, very bite-sized. And this was when you couldn't even do 240 characters on Twitter. So this was like tiny bit of advice and information that I was like gathering like almost like squirreling away to try and learn who I was and understand who I was. And the thing is like I didn’t get a diagnosis for my physical health until I was 17 so I had like 7 years of being batted around the system before somebody was like this is this thing. Um so I was very much just piecing together all of it and, like, I really feel like the community is what helped me do that. Like I don’t feel like there was a leaflet or a specific person or a book that you could kind of just go this is the thing. And, um, I am not saying that my book is going to provide that for everyone because I don’t think it will, I think it’s a real starter for ten, but for me it was very much just the community.
Beaux: Yeah, absolutely. And that just speaks to the importance of lived experience advocacy as well. But I'd love to ask you why you think lived experience advocacy is important and why we should center that type of advocacy and our activism!
Charli: I think like, fundamentally any person is only one set of lived experience or living experience, I guess. In the world where I work in terms of like health care and charity work, we often we often talk about the fact that we tend to be called lived experience experts or practitioners, but actually we most of us are still living our experiences, which is a really important distinction to make.
But at the fundamental level, we're only one one set of that. We are we all only live in this one brain and body, and you can't fully understand a brain or body that you're not in. I guess that like, you know, the double empathy problem explains that really well. This idea that we can't fully meet people where they are because we can't be in their brains.
But I find that in the kind of healthcare world, assumptions around our needs are very heavy and generally very inaccurate and often like I'd go as far as say problematic, especially kind of in Autism spaces, like it's still very deficit-based model. It's still very much like kind of all of these kind of disorder language and like pathologizing and all of that kind of stuff that is just not not helpful.
So I think with lived experience, like my kind of job is to kind of go into those rooms and kind of go, 'No.' Actually, here’s this thing. And I don't know, I think it's a real privilege for me to be able to to to get to do that in the rooms that I get to do that in.
But I think in anything I think there's so much room for lived experience in any sector or in any in any workplace, in any in any kind of spaces, trying to advocate and and work out the needs of our communities.
Beaux: Yeah, absolutely. How did you kind of end up working in the healthcare space? What led you there?
Charli: So I kind of fell into it. So I in 2020, in the summer, I got asked to work on like this one singular project. So I was admitted to psychiatric inpatient care at 15, not long after the panic attacks. That kind of started my journey. I fell into crisis and they decided to admit me to an inpatient psych unit.
Very unnecessary, very traumatic. Really shouldn't have happened fundamentally. But I got asked to work on a project in like August 2020 time and just would like the local NHS service on like one specific project that was trying to like reduce admissions in like one certain way. And so I was kind of working on that and, and I ended up becoming like part of like chairing some stuff for them and kind of working on that.
And then I'd been doing that for like most of a year and then I had I ended up taking a year out of uni because I kind of fell into this like crisis/burnout kind of combo in my second year at uni. And so I had to take the decision to take a year out and a couple of other roles came up and I was like well I’ve got the time. I'm not at uni, I need something to do with myself.
I'm very much a person who like needs a lot of things, like I need stuff to keep me going. So I kind of went through these other roles and like, I guess the like they just never got rid of me. It's really I was talking about this yesterday to someone who's new at one of my workplaces, and I was saying, like, there's very old clips on YouTube of me speaking events for one of the charities I work for, and I’m always a bit like they get rolled out sometimes and I’m like “Ohhh, oh no, I don’t want to see that.” But it is actually really nice to see how much I’ve actually grown in that piece of work and like that, that place. So yeah, it's kind of an accident followed by being able to just work for some really, really lovely people who have really encouraged me the whole way and involve me in over projects and really given me the time of day.
The like. I think I'm a person who very much struggles to kind of talk myself up like I'm not very good at being like, I'm like, good at this thing. Or like, so I'm really like, honored that those people have given me as much time of day as they have because like, I certainly wouldn't really give it to myself. So yeah.
Beaux: Yeah. It's also been really sweet. Just, you know, seeing, seeing your work on Instagram and seeing your community kind of like celebrate you when you have these milestones. It's just really sweet to see people like, show up and show their support. Yeah, but I'm wondering, you know, you, you do so many things. How do you balance all that while still taking care of your mind and body? Like, how does that work for you?
Charli: I think it's it's is very much been a work in progress and is arguably still a work in progress. I, I have to say that is like quite a heap load of privilege. You know, I have a very, very supportive family that not not everyone has. And I've also got like a therapist and a physio that not everyone has access to.
So there's definitely like that, like absolute caveat. The I have that privilege and I have people that are providing that kind of external support. But I think for me it's like accepting that support has been really hard, like it's been a lot of years of pushing back on that and not wanting to take that. And I think it's taken me a very long time to kind of go, It's okay, like you can just accept that and it doesn't.
Does it make your failure like that internalized ableism piece that I think a lot of us have is so hard to kind of I guess like it's not completely gone. It's never going to be gone. But to kind of push back on that and be able to say like, this is okay, I'm also absolutely rubbish at saying no to things. Uh, so it’s definitely been a journey of me being able to just go actually I don’t want to do that and I don’t have to do that. I think scarcity mindset is so hard like when it comes to I don’t scarcity mindset is not exclusive to neurodivergent people but I’d argue I’d wager that it’s higher in us because of this kind of sense of society kind of showing us out. Um to be able to go like actually I don’t want to do that and I’m not going to suddenly lose all my job opportunities if I don’t do that, um, and also I’m a part-time student now so I did my first two years full time and when I ended up taking my year out when I was deciding whether I wanted to go back it was very much a okay I do want to go back but not like that. Um, and I was so reluctant I was like I don’t want to go part-time because I just want to finish my degree and be done like I was so desparate to get out of there. Um, but actually at the end I was kind of like no if I’m going to do this it’s going to have to be part-time. And that’s been a big thing for me just like my studying is part-time, my work is very part-time, there’s a lot of time for rest and that’s okay.
But it’s been very hard to not be like doing. Like in my second year I was like a full-time student, I was on executive committees for three different societies, I was a co-chair for one of them, I was working, I was doing it all. I literally became known as this girl who was just in meeting all the time.
And it’s taken a long time to unpick that and go yeah that that that looked great but it was actually me just trying to pile on so much pressure that stuff wouldn’t fall away. Um, so, I live a very different life now even though it’s only been two years since them.
Beaux: Yeah. Hustle culture gets us claws into all of us. And moving from that scarcity to the abundance mindset is for sure a journey. But yeah you talked a bit about your experiences with burnout. What have those kind of what have they taught you?
Charli: I think yeah. Is it I've had like so many different forms of burnout. So like when I had the mental health crisis that I had when I was younger, that led to my diagnosis. They essentially put that eventually down to like masking burnout.
So I'd spent like 15 years masking so chronically and not knowing that I was doing it. My brain eventually just like shut down and just couldn't do it anymore. Like it just physically couldn't do that. And I didn't start unmasking until I was like 18. So I had like four years, three, four years of no 19. So yeah, like when I basically when I left school because I was too scared to start unmasking when I was at school, like nobody knew I was Autistic except the teachers and like a few friends, like it was very because it was such an insult in school and I was just like, nobody can know.
So I didn’t start that process of unmasking until I was like 19 and, I think, that meant that there was a continual burnout from masking even though I kind of knew about it. So I think for me, there has been a long journey of recognizing the burnout and actually doing something about it. Like I’ve been I think when I was growing up and like even a couple of years ago it was kind of like I can just push that away and it’ll probably go away. It doesn’t. You might kind of like be able to kind of keep going but that doesn’t mean it’s gone. Um. So I think it’s very much been like a long life-lesson of like you can’t just ignore it.
And I think like reducing my capacity has been such a big thing like it’s again like to not be working 24/7 and like I had a big bout of burnout in August just gone and I couldn’t put my finger on why. I was just like you know like okay I had uni and then but that shouldn’t have done this. And I think, for me, there doesn’t have to there’s probably not always a reason. Like it’s not always going to be as linear as load of stuff happened and then this happened and then that so oh now I’m burnt out. Like with Autistic burnout, Autistic burnout is so unique in the fact that it can be just from living in a non-Autistic society. And we do that every single day so yeah, sometimes it might be more oh I’ve done loads of stuff this month but sometimes it’s just going to be there.
And I think that’s such a hard pill to swallow. Because nobody wants to I like, nobody wants to believe that they’re going to just spend their whole life just having these periods of burnout. Nobody wants to accept that. I certainly didn’t and don’t but I think you kind of have to get to a point where you’re like this is a thing that will happen and these are the ways that I can manage it.
Beaux: Yeah. Yeah, totally. And you you know, you've talked a bit about what the the landscape looks like in the UK with regards to neurodiversity, but yeah, could you share a bit more about where the UK is at in terms of acceptance and understanding and like what work there is still to be done both in the, you know, in the medical space and beyond.
Charli: I, it's fascinating to me. It's partly what my dissertation is actually going to be on because it's so interesting to me. But I think there's a belief that there's progress. But I, I think at the moment it's very, very focused on like neurodivergent strengths and neurodivergent superpower. And oh it's not a disability and it's kind of pushed to that kind of focus.
And that looks progressive. But in my opinion, that's actually not very progressive at all. Like we've kind of become this we've kind of become employable now as like a fashion statement. But then companies are shocked when it's actually they're not able to keep us because we're not being properly accommodated. And it's like we can't just be our strength.
Like that's physically impossible. And I don't think the landscape understands us as whole people. Like we're very much kind of this kind of chip I of, of like, they're going to bring pattern recognition to the table or similar. And actually I find that very, very difficult to look at. And also it's very, very focused on see only things like Autism and ADHD, maybe dyspraxia or dyslexia, if you’re, really lucky.
But the rest of the umbrella is not getting a look in at all. And I think I just I personally don't see that as progress. I just think it shifts us to a very problematic mindset, just in a very different way to what it was previously.
Beaux: Yeah, exactly. It's like just the just the asset focus versus the, like realistic, like whole person understanding is so frustrating. I know the feeling. You've talked a bit about this, but I'm wondering what you would like to see change and how the UK approaches neurodiversity and then also how you see the space kind of changing in the next year or so?
Charli: Yeah, there's a lot. I mean, so the last six months there's been a lot of very anti-neurodivergent media.
There's been a, there's been this whole host of articles talking about ADHD, overdiagnosis and all of this sort of thing. And then you've got kind of the constant rhetoric from the from the government about, you know, benefit scroungers and and all of this stuff. And sometimes it just feels like there is an impossibility that that is going to change.
It's very, very difficult to be a disabled person in the UK and be someone who claims benefits or has a blue badge like the parking badge or or whatever, because you're just constantly surrounded by this rhetoric that you're scrounger or a faker or you should be in work and or if you are in work, then actually then. So it's like if you are in work, you can't be disabled.
But if you're not working, that's a problem and you're just constantly surrounded by this. Like it's totally impossible to just walk the world like it's so difficult. But I think it basically all needs an overhaul. The benefits system is a desperate overhaul. We have programs like Access to Work where you can get like equipment and support as a disabled person for work.
But it's very hard to access. It takes a long time. They make it as difficult as humanly possible. All of those systems just need to be taken apart and put back together, I think. But also just understanding of disability and neurodivergent as as a whole just needs changing. For me. I see disability as a very neutral term. I see I don't see it as a bad thing or like a superpower.
I just see it as something that I am and this seems to be a bit of an impossibility for people to understand. You know, it's constantly like you're not disabled, you're differently abled and like or like you're not disabled, you have a superpower. And it's just it's just so hard. But I think people don't see me as a whole person.
They just see me as the parts of me that they want at that moment. Yeah. Whenever they want me to be an inspiration or they want to make me an example of the way that social media is forcing people to become neurodivergent or something like, they'll always use me for their rhetoric. It doesn't matter whether that's like supposedly positive or whether that's negative.
I'm always just going to be the pieces of a person that they can use in those moments, which are I'm really, really hard.
Beaux: Yeah, the tokenism of neurodivergent people is so real, and we're just seen as these kind of things in companies to profit off of seeing as like superheroes instead of as whole people who, you know, have all kinds of identities and flaws also.
And yeah, this whole like being seen as a product is really icky. So I totally agree. How do you think folks, disabled folks can kind of use the system knowing that it's flawed, like super flawed to still get their needs met?
Charli: Yeah, I think it is. I always am like advising people. I'm like, have all of the evidence you could possibly have and be prepared for what the system is.
When I went through the system, I didn't really know anyone who had been through it. So I kind of wasn't prepared for how violent it actually is. And so now when I have friends go for it. I'm like, Here's all the ways that you can support yourself during that process. Here's all the evidence you could create. Make sure you record this, Make sure like and it's it's it's so hard.
But I think making sure that you're prepared for it is like the biggest thing because it is really horrible and it is really hard, but it also isn’t impossible. It's just yeah, I think it really is very demoralizing and it's constantly forces yourself to not see yourself again as a whole part of it because it's how you'll do application forms and it will be all of the things that you can't do.
And you're kind of saying you're kind of forced to like see yourself in this negative light. And so I'm always kind of saying to people like, you need to be able to make sure you're not thinking of yourself as just that person. You have to put on that page like there is more to you. It's just that this is what the system requires, if that makes sense.
Beaux: Yeah, it's like playing, playing the game kind of to get your needs met. Yeah. Do you have any advice for, you know, young budding activists who are maybe also navigating their neurodivergence, their chronic illness?
Charli: I think the fundamental thing is like allowing yourself to kind of grieve because there's nothing wrong with us. Like, there's nothing inherently bad about being who we are.
But that doesn't mean there isn't a grieving process of like realizing that you are different and that you are walking the world in a different way and that there are things that you're probably going to struggle to engage with or struggle to like have people let you access them. So I think like sitting with yourself and being like, It's okay.
Like it's all right. But actually I can I can grieve what I didn't get or I won't get, and then working out what your needs are. And particularly, I think with Autistic and chronically ill people, my number one thing is always understand your sensory profile. I think sensory stuff is really under-discussed in terms of like the professional side when they about autism, like it's still very like social and communication condition, but it's actually not just that, like that's the external, but the sensory stuff is like to me much bigger.
And I think being a chronically ill person, there's actually a massive sensory aspect to that as well. So the sensory part of my book is a true labor of love, like it's literally 10,000 words on it. So because I think sensory profile is one of the major, major parts of understanding yourself and understanding your needs. And yeah, I think like just understanding that like self advocacy is really hard, but it does get easier and it can be worth it.
And understanding that like you're not faking just because somebody says that you are.
Beaux: Right. Yeah, well, what keeps you motivated in your advocacy work?
Charli: I think it's really can be really hard because the change is so slow and I had quite a lot of therapy sessions where I'll kind of be saying, like to my therapist, like, I don't want to do this anymore.
Like I don't want to do this because nothing's changing and, and we'll kind of have conversations and then I'll kind of be like, okay, actually, yeah, the system looks the same, but actually that person told me that that training session had done something for them or that post had supported them. And having the community around me is really beneficial.
And I've really like learned a lot more about myself for the content I make and just like realizing that, like it doesn't have to be hundreds of people or the whole system for it to be beneficial. But I do find I have days where I'm just like, I just want to pack it all in. Like, I don't want to do this anymore.
I do find that I do find it really hard, but I think I kind of try and like cling to when people have told me that it is working and that it is doing something, I guess.
Beaux: Yeah, and I mean, just from from personal experience, I feel really seen by your work and I'm really grateful that you're doing this work.So yeah, it's but just working from working in inclusion and belonging. I know it's nice sometimes to yeah, to hear that and to have external reminders what it can feel really hard and like though the road is endlessly long, so I know the feeling. But as we close out, I'm wondering, you know, what's coming up for you in the coming months.I know you have a book coming out, but yeah. Is there anything you're extra excited about?
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