The Middletown Centre for Autism Podcast
The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus on the lived experience and knowledge of our community. Episodes highlight issues impacting autistic people and we share ideas for family members and school staff who are providing support.
The Middletown Centre for Autism Podcast
Charli Clement – Understanding Chronic Pain
In the latest Middletown Podcast, we speak to Charli Clement, autistic author and activist. They live with chronic pain and have written a book to support other autistic young people experiencing chronic pain.
For more information about Charli’s book, All Tangled Up in Autism & Chronic Illness click here. To keep up to date on Charli’s work click here
Welcome to the Middletown Podcast. I'm Kat Hughes, I'm a researcher at Middletown and I'm also autistic. In this episode I chat to advocate and author Charlie Clement. They're autistic and they live with chronic illness. We know that autistic folk are more likely to live with chronic physical health conditions and Charlie has written a great book about it, all tangled up in autism and chronic illness. It focuses on how we can manage those dual identities. In our chat, Charlie has some really practical ideas to manage daily living and school life with co-occurring chronic illness. I found them to be so insightful. I hope you enjoy our chat. Charlie, thank you so much for joining us on the podcast and I wanted to start by asking you what exactly is chronic illness?
Speaker 2:so I would talk about chronic illness as a condition that is long lasting. Generally, we talk about chronic illnesses in terms of physical chronic illnesses, but some people will talk about their mental conditions as as chronic as well, which is perfectly valid, because those two are are long-term and have a have a bearing on your life, which is how we define chronic illness. So, although I will probably mostly talk physical in this conversation and I do in my book, it's probably worth like knowing that often people do talk about it in mental health condition terms as well. But yeah, like long term, something that has a very big effect on your daily living can like symptoms that don't go away, I guess.
Speaker 1:And I know it's something that you've spoken about and you've written about in your book, which I have a bunch of fantastic um is your own experience with chronic illness, and I don't want to ask you too much and I don't ask you to to sort of tell us anything that you're not comfortable, but can you tell us a little bit about your experience with chronic illness?
Speaker 2:yeah, of course. So I, when I was about 10, I um joined the scouts and realized that whenever I stood with my legs together, um, it was causing me a lot of pain. And it now turns out that I was in lots of pain at other moments as well. But I just thought that everyone had pain then, like I knew it was wrong to have pain when your legs were together, um, but I didn't understand that nobody else had pain from walking a few meters, you know, um. But that was like the first time that we kind of went okay, like something's up here, um, and so we went to the doctor and basically spent the next seven years being pushed from pillar to post Neurologists, orthopedic people, like every test you can think of under the sun, and I was experiencing kind of more and more symptoms over that time. So it was very clear very early that I was like very bendy is how they kept referring to it, but nobody ever talked about it as hypermobility or LSD loss or anything.
Speaker 2:And then, when I was about 14, I started having panic attacks, which kind of started my journey into understanding my autism. And we saw an orthopedic surgeon, and he shouldn't have said it like this, but I mean it kind of it supported us in the long term, I guess. And he was like well, you have panic attacks and you walk on your toes, so are you autistic? And we were just like absolutely aghast, like that was such an unbelievable concept and, you know, didn't know any autistic people at this point this is 2015, so the awareness boom has not happened yet um, but I ended up in a mental health unit during that crisis period and because I was not doing any exercise, not walking anywhere, living on two corridors, I essentially lost all my muscle tone. So in El Danlos, your joints are so lax that your muscles are kind of what's holding you up, and so I lost my muscle tone as well. And then I couldn't walk for two years. My chronic fatigue and chronic pain really ramped up, and that's when we started to understand. I also had postural orthostatic tachycardia syndrome. It's really great when you have a condition that you can't really say echicardia syndrome. Um, it's really great when you have a condition that you can't really say um. But yeah, so my kind of chronic illness and autism timelines kind of collided because of that almost, um, like that experience of being in a in a psychiatric hospital, very related to my autism, really meant that my chronic illnesses got worse and worse. So although we'd already been in the system around that for about five years by that point, it really kind of nosedived from that experience.
Speaker 2:Um, a couple years later eventually found myself in front of a rheumatologist who actually understood um, and kind of got my um. My diagnosis is technically hsd um hypermobility spectrum disorder, um, because I was like a point off eds diagnosis, but I think everyone kind of knows that that's actually what it is um. And then my tachycardia syndrome a couple years later, um, after many horrible experiences with cardiologists, um. So yeah, it's.
Speaker 2:It's an interesting one, because autism, adhd, eds parts is like so common um, but through my experience nobody ever put that together for years and years. Um, like everyone on the Facebook forums was like yep, this is obvious. Like you're bendy, you're autistic, that's EDS um, but none of the doctors were ever putting that together and I don't think that's changed in the years since I went through that. Like I'm very of the opinion that if you get diagnosed with one, you should be assessed for the other in an ideal world, but they still just never put these pieces together for most people. So yeah, that's kind of my yeah lengthy colliding story, but yeah, now kind of living with chronic pain, chronic fatigue, my tachycardia as kind of just. They definitely affect me in a very different way now to then, but very much still a huge part of my life, I guess.
Speaker 1:Yeah, and I think it is something that a huge amount of us will relate to, and I sort of have a very similar collection of conditions as you have. So, yeah, and I think it does feel like we're sort of reaching a point where there is more joined up thinking in relation to that sort of chronic illness and and um, autism, adhd and I think your book is is brilliantly timely for that and have you found that that sort of initial identification and diagnosis process is generally difficult for autistic people? Obviously, your journey took a long old route to get there.
Speaker 2:I think so. I think it's fairly, fairly standard and I think a lot of people report with kind of the same collection of symptoms and traits respectively and just don't get hurt, whether it be because they're already diagnosed autistic, and then it's well, it's just your autism and you don't understand your body and things like that, or not diagnosed autistic yet, and then it's all in your head and you're like, especially if you're of a marginalized gender, it's just that, or it's just lose some weight, or so. I think it's really fairly standard experience to really be pushed around, pillar to post, and even rheumatologist my first rheumatologist told me EDS didn't exist and that I couldn't have fibromyalgia because I was going to school, even though that was taking everything I had at the time. Um, so you know, even once you get in front of a doctor, it's, you know, never a guarantee, and I think it's such a common experience for most of us to just be pushed around for a while, if we ever get any support, I guess.
Speaker 2:Um, and it's, and it's so frustrating because I think the rest of us can see it so clearly um, and understand these links. And you know, when I was going through it there wasn't really any research on it. But there is now. There's a few research papers, there's a few academics working specifically on these links, so the doctors can't argue that it's not something we're aware of anymore, and yet they will. So it's really frustrating.
Speaker 1:Yeah, absolutely. And then, I suppose, is navigating the healthcare system another sort of barrier that exists for autistic folk.
Speaker 2:I think there's definitely a few different barriers in healthcare. I think one is communicating differently and that comes in a variety of forms. So it can be around literally communicating differently in terms of not being someone who can speak, whether you're non-speaking across time, where you have verbal shutdowns. So many doctors don't understand the concept of, like, alternative communication, or augmentative and alternative communication. Um, you know, so often I would have communicated better if someone had just said you can write it down, you can type it, you can point to this picture on a board, like anything like that. So there's the, there's the actual physical communication, but there's also just how we interpret and then communicate out what we're experiencing, because so many of us have difficulties with our interoception, so we're quite literally taking in things like pain signals or other signals our body is giving us differently, um, so it's very hard to then communicate that back out.
Speaker 2:Um, I used to really not be able to discuss my pain at all because I couldn't. I couldn't differentiate between different types of pain and I couldn't. I couldn't really tell you where it is. I couldn't tell you what type. I hate scales because they mean nothing to me, like I'd just be like people would call me pedantic, but I just didn't understand what the scale meant. I didn't understand, like, what it was meant to mean. I didn't understand what it was relative to another person, like I just didn't get it.
Speaker 2:And then if you're having the interoceptive difficulty, plus you don't really understand how a doctor is communicating like, so for me I always say like growing up they would be is it a stabbing pain? And I would always say I've never been stabbed like, which isn't what they mean, right, like that's not the point. Um, but I just nobody ever really explained that to me and I couldn't understand it because I take things so literally. So the combination of I can't understand my own pain, I don't interpret it the same way. Plus you're then using words, literal language, idioms, things like that that I don't understand. It's going to be so much harder to communicate that out and I always say I think it's not our responsibility to do that. It should be the responsibility of a healthcare professional to meet us where we are and and work out where we are, um, but unfortunately that's obviously not the way it goes, um, so yeah, you've actually brought back a memory for me there.
Speaker 1:Um, when I went to get my EDS diagnosis and I've always described like my shoulders feel really heavy or my hips feel really heavy, and it's the diagnosis, and I've always described like my shoulders feel really heavy or my hips feel really heavy, and it's the only way I've known how to describe it. And the doctor, as she was examining me, she was like oh no, they're not heavy, that's like partially dislocated, that's what that is, and I just didn't have the word spread. I knew it was wrong but didn't know how or why. It's fascinating. And then you mentioned, like in your, your own sort of school journey, that just sort of being able to to get to school was really draining and and sort of took a lot of your energy. So would you have sort of tips for young people who might be sort of going through something similar and how they can sort of deal with that in their school day and with sort of daily tasks?
Speaker 2:yeah, it's so interesting because so I was originally at a girls grammar school for the first three years of secondary um, absolute nightmare, terrible place to be. Um, as an autistic person, um. And then I moved to comprehensive after that and I actually had a much better time there. But I had to really learn how to navigate it all because, especially after my time in the psych unit, where my health was so much worse and like there's just so much going on at that time, like I was in year 10, like GCSEs were coming, like it was like you're just gonna have to get through this and learn how to deal with it. So for us it was a lot of what adjustments will make the day better, um, and even if those do put people in a position where they are having to spend money for you or they are inconvenient, so-called like there's nothing wrong with that and like that is something you should still ask for, like that's not your responsibility as a young person, that's their responsibility. So for me, I I ended up kind of being not quite on a part-time table, part-time timetable, but like I would kind of go in late or miss things like PSHE. That felt like we were able to do that? Um, I ended up typing on a laptop all the time, um, and using writing slopes in the subjects that I couldn't, um, and I think, just like learning to manage it in terms of things like even just like, where do you go at break time? Like, okay, standing around the playground is probably going to add extra pain, so let's not do that. Where else can we go? We don't spend lunchtime in the really loud hall. We do go and spend it in a small classroom somewhere else.
Speaker 2:I think it's for me, with chronic illness in school, it was always the little things really added up, like layering lots and lots of different adjustments was what really helped. And then also thinking about prioritizing in a way as well, like I, I was very academic, so I didn't want to let anything go like, I didn't want to just be like, okay, fine, I'll just focus on maths and English. But there were definitely times where I was kind of like, okay, I can, like it's okay for me to just sit in this lesson, not take it in so much, and that's okay. Like that's fine, um, you can always catch it up later, you can always do it at home. I spent quite a lot of time.
Speaker 2:Um, this sounds counterintuitive. I in that I tended to do like an hour after school in in a subject per day, and I think it sounds counterintuitive because it meant more time and energy. But what it meant was I had very focused like one to one or small group time with a teacher after school, so that extra hour I knew that I could kind of go back on myself on things that I might not have been able to take in during a 30 student lesson during the day, um, so that extra time and energy became more worth it because it was better for me than doing like, than trying to focus so hard during the day. Um, but I do appreciate for some people that sounds so counterintuitive.
Speaker 2:Um, but yeah, I think for me like layering lots and lots of different adjustments, um, and then really looking after myself at home very solid morning routine, very solid evening routine, not working past a certain time, um, revision being very like set time, working for, not for other people, you know, and, to be honest, like having less of a social life. Unfortunately was kind of the reality, but that was my priority Like, if you're someone who is less academic and you do want to focus on your social life. Still, you deserve to do that too. Like as a disabled young person, you deserve to also have a social life, if that's your priority, so I think, yeah, prioritising layering, learning to understand yourself, working with school, not being afraid to ask for what you need, is kind of my top things, I guess.
Speaker 1:Yeah, that's fantastic. And you mentioned sort of the idea of kind of pacing and routine and I know in your book you've got a whole chapter on that. Are there things that teachers can do to kind of support young people with that sort of pacing through their day.
Speaker 2:I think I would say one of the things that really helped me was teachers understanding that I had that need and being able to say to me actually, charlie, like you could put less focus on this thing or like, actually, while we're doing this exercise, just take a minute out.
Speaker 2:Um, maybe actually don't do that piece of homework, because it's slightly irrelevant. Do this instead. Um, just being able to adapt the small things and kind of go okay, actually, like is this thing like super necessary, like how can we, how can we use the energy that we have in the most effective way? Um, and yeah, and I think supporting to, because I think when you're a young person you're getting thrown all these messages that you should be revising for like eight hours a day and like you should be doing every single subject and you should be also doing extracurriculars and you should be like building up your CV and like there's just so much going on, and I think it's really hard to not internalize the messaging that you're not doing enough. But actually that messaging is not for you as a chronically ill young person. That messaging is for the masses. So I think I always appreciated it when teachers would kind of come and say that's not going to work for you, like, how can we make it work differently? And again, I think routine and structure is always useful for pacing. So you know, in a lesson, first, like you come in you do a starter activity and then you go on to do a fit like a block of a thing and a block of a thing and then there's a conclusion at the end. Having that structure as an autistic person is great, um, because you know what you're getting into. But what people don't understand is that's also good on an energy, chronic illness level, because it means nothing comes out of nowhere. Um, and you can prepare yourself to know that in that lesson you're gonna use that amount of energy or chronic illness level, because it means nothing comes out of nowhere. Um, and you can prepare yourself to know that in that lesson you're gonna use that amount of energy or spoons or battery or whichever theory somebody appreciates. Um.
Speaker 2:So yeah, and I think, and again, like things like break time, lunch time, they're like hidden times during school that often take that energy, being really solidly aware of that, um, and yeah, just like being very, very careful about reasonable adjustments, like actually putting them in place, being very, very aware of the really small things, like for me I used to. I used to have certain places in the classroom that were better for me to sit in and sometimes somebody would change the seating plan and I wouldn't be. I would be too scared to kind of say I can't sit there. So I'd sit there for like multiple lessons before I'd be like actually like I really can't sit here. Um, but that was all in my like plan and like it should have been really aware and it meant for those few lessons I like couldn't do anything.
Speaker 2:So being super aware of like someone's needs and actually putting them in place, and because I think so much of the exhaustion of being disabled in general, but especially chronically ill, is like you don't have enough energy to fight for yourself all the time, and I must have spent so much time during school being like you haven't done this or you haven't done that or I need this to be on yellow paper and you didn't do it and I'm in the wrong seat and I can't do the test that day because I have an appointment and there's just so much self-advocacy and that's exhausting on its own. Like I'm just trying to get through the school day. I need you to actually do the things that I need and obviously teachers are underpaid and overworked so I totally get that they don't always have like they're not going to always just exactly remember anyone's reasonable adjustments and like they're going to really struggle to keep that on board for every student. But the more that you can do that, the less energy that takes from us.
Speaker 1:Is is really useful really important message to get across. Um, have you found that internalized ableism is an issue for a lot of young autistic people particularly? You're dealing with chronic illness as well, because I know even for myself. I wasn't young when I had to start using mobility aids and even then I was kind of. It took me time to get used to the idea and I had to really challenge where that issue was coming from in me. So is that something that you found?
Speaker 2:Absolutely. I think it comes in a few different ways, so like one mobility aids for sure. So I started using a walking stick at just under 17. Started using it on the same day as my GCSE biology exam and was much more worried about all of my classmates than I was about that exam. And it is hard because society says they're only for elderly people. You know, even older people who are not elderly, who use them, get a lot of flack for it.
Speaker 2:Um, so, being 16, you know, I was told I was like asked if it was a fashion statement. There was a kid in a who once asked me like if I just come back from a war like you know, there's so much coming at you about that and it was something that I really just had to like just keep going and just like grit my teeth and get on with it, because I knew that that was something that was really helping me energy wise and in terms of my joints and in terms of my tachycardia. So it wasn't something that I was willing to give up for the sake of of the comments and the stares and people grabbing at me like I couldn't give it up, like I needed it. Um, but it is super hard and it's so draining. So when all of that messaging is coming in, of course you're then gonna experience internalized ableism, like, of course, um, it makes so much sense as to why you would then be messaging within yourself because that's what's come at you. It's come at you from the media, um, it's come at you from your peers, you know, maybe even family, sometimes, like I had fairly supported family, fairly supportive family, but, um, I know lots of people don't. Um, so you know, I really learned to like have ones that I liked looking at and I would like wrap fairy lights around it for Christmas and like things like that. So I like learned the ways to get through it.
Speaker 2:But definitely, mobility aid, internalized ableism, is massive. Like it's very hard to believe that you're a worthy person, um, and particularly as a young person, like the whole point of being young is that you're healthy and everyone is like telling you that you, you should be able to do all these things and you should be fit and strong and and on the autism side, like you're so different and you often don't understand why you're so different. Um, so you do feel like weird and broken, even with a diagnosis, I think you. You tend to feel like that because you just don't understand, like why you can't be like everyone else. And and you know now I don't want to be like everyone else, but when I was a teenager and you just want to blend in and you just want to get through the day, it's incredibly hard to love yourself and to love who you are.
Speaker 2:So I think internalised ableism is massive on both sides of the coin for autistic and chronically ill people. I think the way that I got through it as a teenager was just by having people around me who reinforced that that wasn't true and wasn't the case, um, and also by learning about and following a lot of people who were like me, who were living really lovely lives. Um, and you know, especially older folk. Um, like you know, I say older at the time, I mean like 20 somethings. Um, you know, especially older folk.
Speaker 2:Like you know, I say older at the time I mean like 20 somethings, you know, like people who had just got through school and like, but you know, it could, could be older than that too, but, like you know, really reinforcing to myself that school was not forever and that I wasn't just broken and that I was just me and I was just like living the life and I would get through it. Like it would end eventually. Um, like school does come to an end, even though it never feels like it will. Um, and yeah, like following lots of lovely people on social media, reading lots of books about our experiences there's so many more of them now than there were when I went through um, yeah, like really unpicking within myself where those views come from and like, why have I got those? And and how can I go back on them? And and work it all out.
Speaker 1:I think yeah, it's, it's really important and yeah, I think the, the power of representation, can make such a massive difference. I absolutely agree with that. And then, with all of the experience that you have and all of the knowledge that you have, is there advice that you give to people who are supporting autistic young people who are dealing with chronic illness?
Speaker 2:I think one is I always bang on about the sensory system, um, because the autistic sensory system is so different, um, already. So when you're kind of also dealing with chronic illness, your sensory system can be so difficult to handle. You know, for me my chronic pain and fatigue would really ramp up my inability to cope with with sensory like input, um, so become a cycle where I was more and more tired because I was melting down because of the input which was causing more pain and fatigue. So, really understanding what the sensory needs are, what aids and accommodations can we use for that? How does the sense of body signals specifically impact? So for me, I grew up like chronically dehydrated because I just didn't get first signals and no one could understand why I wasn't just drinking water, and it took us until I had an understanding of it, like 17, to go. I just don't get those signals. Um, so now I just like drag around huge bottles with straws in because that's the only way. Like the visual aid means that I will drink some water. Um, but at the time I just was like well, I don't feel thirsty, so I can't like, and everyone tells you that you, you will get thirsty and I just never did. Um, so things like that, like understanding that and and how that crosses over and you know, for me, as someone with pots, you're meant to eat more salt and drink more water, right? So like being able to have aids to do that, because I'm not gonna remember or I'm not gonna get the signals is really key, so the sensory system is like a really big one. I think. Also, generally, understanding self-advocacy and advocacy like how can you support your young person to be as independent as possible, but with the support when needed. Um, you know, I think for me and my mum we it took us a long time to find that balance of knowing when she should step in and when actually she should leave it to me. Um, so, beginning to understand that as, especially as as aging as well, um, you know, working out like what times do we actually need you to step in and say that's enough or that's wrong? But actually sometimes we need to do that for ourselves too. So I think there's a big piece around like advocating, um, I think. And then I guess my third one would probably be like, not that you put a three point limit on it, but, um, I feel like, as three is like a good number, um, I think understanding that we do experience the world and our bodies so differently sensory, obviously, but just in general, like every aspect of how we interpret the world and our bodies is different.
Speaker 2:It is an internal experience to be autistic and chronically ill, but it also is an external experience because it impacts every aspect of how we navigate the world, how we walk the world, how the world responds to us. So it's not just about understanding our pain or our symptoms. It's also about how do we interact with health care, how do we cope with sensory input in the world, what happens when we face ableism or medical misogyny? You know, there's just so many aspects like actually understanding that external experience is is almost just as key as that internal experience, and I think it's the piece that people often miss out because they're so focused on diagnosis and and symptoms and traits and and understanding your brain, which is all really important, but fundamentally, we're always going to be living an external life too, um, so I think understanding that and prioritizing that as well as is really key, I would say brilliant.
Speaker 1:And then is there a very last question for you is there a piece of advice that you'd give to your younger self if you could go back?
Speaker 2:I think I would kind of just say to them that everyone's going to tell you that it's going to get better, and you're going to hate that, like you're never going to want to believe them that it can get better, because right now it feels so hard and horrible and unfortunately they are right.
Speaker 2:Like unfortunately they are, they are correct. Like it will get better, like it won't be perfect and it will still be difficult and there will still be crisis and there will still be chronic fatigue, and there will still be difficult and there will still be crisis and there will still be chronic fatigue and there will still be all of these things, but it will get better. Because you understand yourself, because you find your people, um, because you live a different life when you're not bound to the school system, like all of these things mean that it can be better. Um, that doesn't mean it won't be hard, and that's not. They're not trying to say that it will become perfect, um, but actually, yeah, the, the worst, the, the worst advice that you never want to hear as a, as a teenager, is, unfortunately, uh, normally, normally accurate. Thanks so much for listening to the podcast.
Speaker 1:This is a conversation-based interview designed to stimulate thinking and, hopefully, support the development of practice. It's not intended to be medical or psychological advice. The views expressed in these chats may not always be the view of meddletown center. If you'd like to know more about meddletown, you can find us on x at autism center, on facebook and instagram at meddletown center for autism. Go easy until next time.