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
Understanding Tourettes Syndrome with Jess Thom
We know that autistic people are more likely to have Tourettes Syndrome or tic conditions. In our latest podcast, we chat to comedian, playwright and author, Jess Thom aka TourettesHero. She talks about her experience living with Tourettes Syndrome and how she’s reclaiming and reframing this misunderstood condition.
You can find out more about Jess here: https://www.touretteshero.com/
Welcome to the Middletown Podcast. I'm Kat Hughes, I'm a researcher at Middletown and I'm also autistic. In this episode, I'm delighted to chat to award-winning author, comedian and theatre performer Jess Thorn. Jess has Tourette's and she's created Tourette's Hero a space to celebrate the humor and creativity of life with Tourette's. Given that between 8 and 20 percent of autistic people have some form of tick condition, I wanted to talk to her about her experiences and the brilliant neurofirming approach that she takes.
Speaker 1:Most people who have Tourette's don't have the sort where they swear, but Jess does. So you'll hear occasional swear words in this episode. We kept them in without editing because they're part of Jess's disability and a part of who she is. Jess has a fantastic understanding of neurodiversity and the social model of disability. Whether you have Tourette's yourself, or you know someone who does, or you just want to learn more about human experience, jess is great to listen to. I hope you enjoy it. Well, just thank you so much for joining me on the podcast. The first thing I wanted to ask you is just a small question what is it like to live with Tourette's?
Speaker 2:Hedgehog biscuit is a fascinating, surreal, complicated, intense, uh experience in lots of different ways. There are loads of things about it that are like fascinating and uh. It gives me a perspective that I wouldn't other otherwise have and I really value that let's get. There are some things about life of Tourette's that are, um, frustrating or tricky, and lots of that is about the unpredictability of my tics, but actually even more so, the unpredictability of people's responses to them. Hedgehog biscuit cats Tourette's is a neurological condition that affects people's movements, so it means that you make involuntary movements and noises and they're called tics, and some of them can be really very funny and surreal.
Speaker 2:They can be really simple or can be much longer Biscuit. My involuntary movements include banging my chest, which I do hundreds of times a day, and I have involuntary tics in my legs that affect my mobility, so I use a wheelchair to get around and padded gloves often to protect my hand and chest, and so for me, in terms of life with Tourette's, there are lots of the approaches to managing ticks. I like to take a practical approach, so thinking about the tools and aids and equipment that can help me do the things that I care about and live in the way that I want to. But yeah, lots of the challenges are about the fact that the world isn't shaped for diversity of bodies and minds, so it's not set up with people who move or make noise in the way that I do, and that's sometimes where there are barriers and frictions and some of that can get really exhausting. Biscuit hedgehog. So there's the physical impact of the ticks themselves, and then there's the impact of living in a often non-accessible world. Hedgehog.
Speaker 1:Which I think an awful lot of autistic folk will definitely relate to Absolutely.
Speaker 2:Sausage.
Speaker 1:I think it's interesting as well because I think a lot of people when they think of Tourette's, they probably mostly just think of cursing, but as you say it's a lot more than that, isn't it?
Speaker 2:headshot. Biscuit, yeah, um, only sort of 10 to 15 percent of people with Tourette's have um popperalia, which is the technical name for um involuntaryary swearing or obscene tics. Biscuit I am one of those sort of 10% to 15% biscuit, but even so, biscuit that makes up quite a small part of my tics, and anything has the potential to become a tic, and why certain words sort of come up and stick around is a mystery. Biscuit I've had no traumatic experiences with hedgehogs and don't think about biscuits, biscuits nearly as much as I talk about them. Um, sometimes people say, oh, it's great, you've trained yourself to say biscuit instead of swearing, and that is absolutely not the case. Fucking biscuits, fucking sheep, um, uh, there is some tics can be. Tics can be quite suggestible, um, which means that, um, sometimes they can respond to the things in the environment or things around me. So, biscuit, often they're completely random, but sometimes they can, uh, being like, have a weird context. It's also funny with vocal tics, because some of my vocal tics can be quite long and surreal and are very much of the time and place that I have lived and grown up, but they're not my conscious thoughts. Then it would be way too simplistic to say, oh, it's just people with know, people with Tourette's just say what everybody else is thinking, because that's not the case. Sometimes people will say things like oh, I wish I had Tourette's so I could get away with saying whatever I liked, and it's like all right, you've completely misunderstood the point, because it's like you don't get to say what you like, biscuit, you get to, you know, say, I say loads of words a day that I haven't chosen to say and that don't necessarily reflect things that I'm thinking about or things that I care about. Biscuit and that that is. That is a uh. That gives me an unusual relationship, biscuit with language biscuit.
Speaker 2:There's also an element of Tourette's biscuit that's doing the um, the worst thing in any given situation, or, or I often talk about it as oppositional tics and impulses, and it affects both vocal tics so noises and motor tics, movements, and it involves doing the opposite of what you should or would want to do in any given situation and it's super quick. But that can be things like, you know, at an airport I'll be the person shouting bomb or um, you know, I I love getting really thoughtful gifts for people for christmas, but will then immediately tell them what they, what I bought them, um or like, can involve like touching hard or sharp objects or moving towards like an open stairwell, and so some of those elements of Tourette's, I think, are the things that people don't necessarily know about or understand and can sometimes look deliberate because they are very in context and they very much relate to the situation. Um, but they are still ticks, they are automatic, and it's that oppositionality can be really challenging and sometimes people think, think of, oh, that that's worse with strangers, so people who don't know you will understand. Actually, with oppositionality, I think, biscuit, the thing that I find most emotionally challenging is the worse. The better you know someone, the more pointedly you know the worst thing to say, and so my tics will often say it.
Speaker 2:Like you know, I will often say something really provocative the moment after a argument has been resolved and some of those um things that have impacts on other people and particularly people I care about other things that I find most difficult to manage and biscuit and I think, with any condition um, that in that affects your brain, it's very hard to tease out what is what relates to your neurology and how you're set, how your mind works, and what relates to your character or personality like some of that becomes is so enmeshed that it is um and you don't necessarily need to pull that out. Um, but that is complicated biscuit.
Speaker 2:As someone with Tourette's because I do say things that don't reflect my feelings or values, and so I do there is a sense of wanting to separate biscuit that from myself yeah um, but I've also very much come to understand it as the product of my brain and to value biscuit, sausage, the spontaneous creativity that my tics give me access to biscuit and the, and to value the sort of perspective on the world that they offer me biscuit and the retro is very much sort of the heart of that.
Speaker 1:Like I first, I think I just don't know where I first heard about you, but then I got your book and your book is so gorgeous. It's like a sort of a diary of your experiences over a year and it's just. It's very funny but it's also very moving and I think you've used your experiences so well in terms of sort of explaining who you are and yours, and have you found that writing and theatre and comedy have been a good way to sort of channel that and help people understand?
Speaker 2:but yeah and I think, but that and that and, but I didn't get there quickly. Basically, I've had tics since I was a child. The first tics that I sort of can remember and date were probably when I was a sort of six or seven. But biscuit, my mom would definitely say that I was sort of very active, wiggly, sleep resistant child, baby, hedgehog, biscuit cats and but I wasn't you and I all. I had other diagnosis but I didn't have a diagnosis of Tourette's, but I did sort of move and behave in unusual ways, biscuit.
Speaker 2:In my early 20s they, my tics, began to intensify and have a much bigger impact on my life, biscuit, and it got to the point where it's like, um, I realized that, having an explanation, being able to have a way, and I suppose with that and with my tics being more noticeable to other people, I started having to develop the language to explain and just, you know, talk about my experiences and I used to find that really difficult and I found that adjustment to that sort of transition, to changing tics and tics. You know tics can change all the time. Changing tics and tics. You know tics can change all the time. One of the definitions of Tourette's is that it waxes and wanes, which means that it goes up and down in the course of someone's life or even in the course of a day. But and um that those that meant that that can be quite hard to navigate and it can be hard for other people to sort of understand and know how, to know how to be supportive. Um, biscuit, as my tics intensified, I used to find it really upsetting to talk about them and I had lots of conversations with friends and family, um, that nearly always ended in tears, biscuit.
Speaker 2:And then I had a conversation with my friend, matthew, and we were working together, biscuit, at a inclusive adventure playground, so an adventure playground for disabled and non-disabled children, and they're like outdoor places and risky places and active places and non-precious places and play and playgrounds. That were a big part of sort of my life. Um, and Matthew and I were friends and we were having a conversation one evening around his kitchen table biscuit, and he described my Tourette's as a language generating machine biscuit and told me that not doing something creative with it would be wasteful biscuit. And I was able to hear that sentence in a slightly different way to lots of other biscuit conversations that we'd had and and I'd also been raised to think that being wasteful was a terrible thing, and so I started to allow myself space to think about it creatively and really, that was the start of Tourette's Hero, and that grew and evolved. We co-founded it.
Speaker 2:Matthew and I co-founded Tourette's Hero together and yeah and I would never have imagined biscuit that it would have developed in the way that it has and one of the very earlier things we did, we were like we're going to have a website, we're going to share some of the most sort of funny and surreal tics and invite other creative people to make artwork in response. So whether that's images or poetry or music and you know we knew that we needed to. We started to create the website together to share the tics. And then Matthew was like, oh, he had kept talking about this blog area and I didn't really know what a blog was. But you know, we started, we co-founded it in 2010 and I haven't really come across loads of blogs and then he started. So he's like, oh, you should practice writing it.
Speaker 2:And I was like I had you know I'm dyslexic, had always done quite, had always found writing quite challenging at school. So, um, but I started writing every day and before I started writing every day, I think, biscuit, if someone had asked me about my experiences, biscuit um, living with Tourette's, I would have instantly gone for all of the difficult experiences, the times people had been unkind or that I've been discriminated against, or the things that were really painful. The funny thing about writing every day was that I suddenly was able to see and recognize biscuit. The huge amount of spontaneous support that I received from both from people, from strangers and from people I know well that, the amount of, like, shared laughter and conversations that were part of my life, and and allowing myself space and time every day, in a really sort of like routine way, to think about Tourette's and the impacts that you know it has had on that day, or what I'm thinking about, what I wanted to write about, helped me build my language and confidence.
Speaker 2:Talking about my experiences, which had was you know, which then unlocked the world in new ways, biscuit, I sometimes fuck say that you know, talking about Tourette's and explaining it to other people.
Speaker 2:It doesn't always feel like a choice. It's a sort of you know. It's a tool for living and for being able to, to do the things that I want in the way that I want and my world has started to get smaller and smaller and as my language built, I felt that open back up and I've, so I've learned to like. I really love writing and it was also interesting that in those, even in those moments where something horrible was happening, I would think oh, what are the interesting things about this? How am I going to frame this? What am I going to biscuit? What are the things that I'm going to write about? It gave me, it gave me approaches, biscuit, um, and ways of processing, um, those experiences that can be really complicated and surreal and weird and hard to know at like entangled, and I think even now, biscuit, if I'm, if I'm feeling really sort of conflicted or confused about something or not unsure about how I'm feeling, writing biscuit is has become a really important way of me trying to separate that out.
Speaker 1:First, hedgehog cats um, yeah, I suppose I was like diagnosed autistic adhd dyslexia not at all, and for me, you know, it's still a chunk of time since I got my diagnosis, but still almost on a daily basis, I'll be talking to someone else who's neurodivergent in some way and kind of have a moment where I'm like, oh, I'm like learning new things about myself and the world in a slightly different way. So do you find that that is something that's still happening for you?
Speaker 2:yeah, a hundred percent. It's like you know that I still am very much learning about Tourette's and about its impact on me and on how you know what that means. You know I mentioned oppositionality earlier and I think how deep that runs is something that I'm only recently really acknowledging, like, oh, the probably the reason that my tics intensify when I try and lie down and go to sleep. That is also probably oppositionality. Um, so it's. There are some things where still now I'm like oh, yeah, um, uh, like definitely. And I think the other thing is that I I also feel like being raised in um in a society and in a world that has that isn't very good at thinking about disability and difference and that has where there's the sort of narratives and negative ideas around that we're surrounded by um you know are quite overwhelming. I think the other thing that is an ongoing task is unpicking sort of internalized ableism and a few years ago, you know, when my impairments changed and I became, you know, I started to experience more pain and a reduction in my energy. I think I really struggled with biscuit, lots of ideas about what you know, what, what you know productivity and value, and you know the impact. You know the impact of an ableist world and a capitalist world and all of these things. It was really hard, like there was a whole bit of time where I really worried about not pulling my weight or not like not doing enough. And then I had another incredible conversation with Matthew. He's very good at saying the right thing, powerful things at the right moment that really unlock something for me. We had another conversation where he was like, well, at Tourette's era, we can take a socialist approach to energy. We can all put in the energy we have and make things happen with that. And then if everyone's tired at the end of the day, that's fair. But we don't need to have biscuit, we don't need to count the hours to make sure everybody's doing exactly the same hours of work, because we all start with different levels of energy and so, to be fair, we have to adjust that. And then it was suddenly like boom, it opened everything up for me and I don't think I worried about not pulling my weight, uh, from an energy perspective since and um, so sometimes I think it's amazing how a suit like how you can let, how freeing it can be to think about something in a new way or to, um to have something unlocked for you, and connecting with biscuit ideas and with other disabled people have been the things that have had, uh, the biggest impact um on my sort of my life and well-being. Biscuit and you know, tourette's Hero.
Speaker 2:You know we co-founded Tourette's Hero in 2010 and it's a sort of we're a creative organization. We work across the sort of arts and cultural sector, so we make theater and we hold big, creative, playful events for children and young people and adults. We do lots of training and consultancy, get to travel, make tv and film it's do all sorts of things and, um, in fact, I would never have dreamed those things were possible, um, and wouldn't. And, yeah, the idea of running a company would have felt overwhelming, but it's. It's also really exciting to think about making something and making it work as a sort of disabled led organization, how we make it work for us as a group of people, and experimenting with different ways of um, setting up our, our world um for um, and being able to sort of imagine new possibilities.
Speaker 2:And you know we really you know there's a lot of Torex's hero is a superhero character and there's a really we walk a really fine line around that because it's not about. For me, it's not about saying that Torex is straightforwardly a superpower, but we did want to have some, we did want to play with um ideas around Tourette's, reclaim the laughter, acknowledge the creativity. And for me, it's about being powerful and about finding your power, finding the finding and act like, acting and sharing the things that make you feel powerful. And often, as disabled and neurodivergent and chronically ill people, our power is taken away from us. So it's about taking um ownership and creating, like, if something isn't working for you, knowing that you have the power to change it. That's not always an easy process.
Speaker 1:It's not always a gentle process, um biscuit, but it is a process by which we can hopefully move towards a world that is better at reflecting the human beings that inhabit it yeah, but yeah, sort of doing that in a way that's individually comfortable for each person is so important, and the fact that you're sort of talking about that and being an example of that for me is really, really exciting, because I think then more of us get a chance to be able to do that as well. When we see other people doing it, it almost sort of gives us permission to sort of look after ourselves and think about what we need, which is so important.
Speaker 2:So, yeah, yeah, well, this, yeah, and there's this sort of the the world is shaped for a normative body and mind that doesn't exist and sometimes, um, like recently at Tourette's. Here we've been talking about the idea of like, live it, the fact that we live in a normative supremacy where normative ways of doing things are privileged above all all others and as soon as you need to do something in a different way, that's seen as less valid or less, and it's absolutely not. The fact is it's. It's not news that all of our bodies and minds work different. It's always been, that's always been the case.
Speaker 2:Um, uh, but, yeah, but, but there are whole groups of people who aren't thought about within how the world is shaped, um, and it can feel overwhelming. You know the number of barriers and it can feel exhausting and it can feel like you know you don't know where to start, but actually, by starting to change things in your own life and and can like. It is about, for me, as often, it is about imagination and about trying to imagine different ways of being so easy, as a disabled person, to have your expectations defined by the sort of systems and politics of where you live and to feel like. So that's why? Lots of reasons. You know why it feels really important to connect across borders and to connect with disabled and neurodivergent people internationally, so that we can support each other, learn from each other and and imagine new ways of being um that work better for for more people yeah, it feels like an exciting time.
Speaker 2:It feels like there is a shift happening.
Speaker 2:Yeah, yeah, okay yeah, um, then I was asking you specifically about tics, but then I wanted to ask first before I do that is just thinking about tics, make sort of give you more tips or make tics more intense it can, can do, because ticks can be suggestible, but also ticks go up and down, um, on their own, and I tick all the time and it's not necessarily, I don't necessarily find it more or less unpleasant, like it doesn't really matter to me if I'm ticking more or less, like the intensity of that doesn't make a huge, actually doesn't make a huge difference to me, straightforwardly, sometimes types of titty and I think there's, there's often this idea, that is it ticks. You know, biscuit, that ticks are caused by nervousness or anxiety. This idea of a nervous tick that sort of lingers on is and that's, you know, tick. Ticks happen and they happen all the time and some, you know, set heightened emotion of lots of different types can intensify them. So if I'm really tired or, um, if I'm really excited, um, but they also happen and can intensify for no reason at all, biscuit and um, they're not a sort of barometer of me, like sometimes people.
Speaker 2:Like there's quite and there can be quite a lot of focus on trying to identify triggers or trick, pick triggers or um, you know that can end up feeling like you're being scrutinized quite closely or people are trying to read your body rather than listen to what I'm saying or asking me directly and so for biscuit. For me, yeah, tics, tics can be texts do change um biscuit and talking about them can change them again biscuit. But um, I'm also very familiar with talking about them and it doesn't make a huge difference um, to me personally biscuit.
Speaker 1:It's almost like people think of stimming that autistic people do to regulate ourselves and we might not be conscious of the fact that we're doing. We know that we need to do it. Our body is kind of telling us to do it.
Speaker 2:It's like people are thinking that that's what a tick is.
Speaker 2:Yeah, and I think ticks are different from stims in that way. In that biscuit they are um and biscuit I mean stims. You know that. That is automatic too. You know that is automatic too, and you can hold ticks in for small periods of time.
Speaker 2:Biscuit the ability to express differs from different people. There is a very strong internal sensation associated with ticks that lots of people don't think of. So it's quite uncomfortable, um and uh, and particularly uncomfortable if you try, um biscuit, not to take biscuit. I often, you know, I often say over and over again when I, at every opportunity I'm like attention looks different for different bodies and minds. We don't all pay attention in the same way, and so if I'm being still or quiet biscuit, I'm definitely not concentrating on anything that's going on, because all of my energy is going into controlling my body.
Speaker 2:Um, in fact, and there are lots of people with Tourette's who will also be, who will also be autistic, um, who will have a mix of stims and and and tics, biscuit and I will. I so, and lots of people with Tourette's will also have co-existing conditions, particularly maybe obsessive, compulsive and disorder or behaviors, and sometimes a distinction between what is a sort of compulsion, and what is a tick is quite, it's quite hard for people to sort of understand or explain. I will often say that for me, like I would explain, a tick as being, as a sort of biscuit, automatic or involuntary, uh, an automatic response to a like involuntary sensation, um feeling, whereas a compulsion is a response to an automatic, to a sort of involuntary thought um, and so that's how I distinguish between them um, but yeah, but I don't. The tics aren't soothing to me in any, um in any way. They don't biscuit um other than if I don't do them.
Speaker 2:That's obviously that can be painful and um distressing and can affect what I and takes a huge amount of effort. But um, there it's much more like biscuit. My thoughts are also a totally biscuit, free biscuit that um, some people do have mental tics, so tics um, but for me, um, they're biscuit, it's, it's, it's like blinking or or sneezing or any of those things where you're sort of you know, you do it, but biscuit I don't.
Speaker 1:I'm not, I don't focus on it in any way, so it just, it's just a sort of constant, it's a sign I'm alive, essentially and then if parents are listening and they're looking at their, their young person, and thinking, oh you know, maybe there's signs of Tourette's here, is there sort of a first step they should take don't panic, biscuit is the first thing I could say.
Speaker 2:So lots of children have ticks and some, lots of ticks, are transitory. So you that someone might have them for a really short period of time, biscuit, or they might just be one tick, that you know. That, that, that, um, that maybe they'll stay around for a bit longer, but they don't have lots of different ticks, the death if they have multiple. So to be diagnosed with Tourette's, the criteria for Tourette's is multiple motor tics, so that's involuntary movements, biscuit. They don't have to be big movements. As a common first um, motor tics include things like blinking or shoulder shrugging, um, biscuit, um, and then so multiple motor tics and at least one vocal tick or phonic tick. That doesn't have to be a word, so sniffing counts as a vocal tick, throat clearing would be a vocal tick. But also you could have words, and they need to be present for more than a year, um, with less and I think with a gap of less than three months. So sometimes ticks do die right down and then come back, but um and so biscuit. But that very much is a sort of spectrum. How, like, what those ticks are is very personal and how they impact people varies a lot for me. So I would say I would say that understanding that and understanding tics is really important. So I wouldn't straightforwardly say to a family to ignore it, ignore tics, don't focus on them, but do create space to talk about and celebrate neurodiversity and the fact that we do things in different ways. Do make a note of tics, do provide opportunities for a child to think or talk about what they're experiencing. And do a like, do approach your sort of gp for um, for support gp. You might need to do that more than once that like at med, like experiences around um of medicine and health care and ticks vary greatly and it's very patchy but it's worth keeping going on because having like, having understanding yourself and having access to that knowledge and information can be really important in getting the right support.
Speaker 2:And, and you know, lots of parents are told to ignore ticks, biscuit and it like. But there is a difference between like, ignoring every tick and ignoring the reality that someone has to rep. So not create like, because if you, if you ignore that reality, it can feel really unnatural and it's very quick for children and young people to start to feel like oh, we're not talking about it because it's shameful, um, and it's not the same as ignoring the person or ignoring and sometimes tips can be really funny or can be really shocking or can be really surreal and actually sharing that experience together and using Biscuit as a springboard to talk about the different ways our minds work and how someone's doing and how they're finding that are really important, and and starting to build that language and that knowledge brisket and that and the sense of like, strong sense of like identity as a, you know, in terms of like you're perfect as you are. That can never start too young, um, and you know we talked biscuit a little bit earlier about like, undoing, internalized ableism.
Speaker 2:I'm really really keen to try and help make sure that children, young people and younger generations of disabled and neurodivergent, disabled-led ways of thinking and feel confident in themselves in their completeness. Those are the things that make a difference between a child who's thriving and able to manage those challenges and the inevitable barriers that they would experience in the world, and someone who doesn't have that support and is therefore much more isolated. Or, biscuit, you know I had, you know, as a kid, without a diagnosis, the reasons that I knew I moved and made noises in unusual ways and the reasons that I made up in my head were way worse than the reality that I had to rest.
Speaker 1:And so just because someone isn't talking about it or a child they don't seem bothered by it, doesn't mean we should that it that it shouldn't be acknowledged, explored and made space for biscuit hedgehog cats definitely and I think the the idea of arming someone with that sort of comfort in themselves and an understanding of themselves, and the idea of there being sort of generations that don't have the sort of battle scars that we- might have.
Speaker 1:Yeah, it's just it fills me with so much hope for the future. My last question for you is what is the most joyful part?
Speaker 2:There's actually a load of joyful things about having Tourette's. I feel I get to, I talk to people way more than I think I would. Tourette's is often a sort of starting point for a conversation. Sometimes that you know, I'm not sometimes that doesn't feel great, but mostly it is. I have lots of really great conversations. Tics also, biscuit notice details in my surroundings that I would never I don't think I would never normally notice. So, for example, biscuit, there's a lamppost that I can see from my bedroom window. Biscuit, and when I moved into this flat, my tics just started talking to each night as I went to sleep and that became a sort of real, weird, sort of surreal routine. Fuck, I love you lamppost, I hate you lamppost. This podcast isn't about you, lamppost. Um, I mean, it's a little bit about you. Um, fuck, hedgehog biscuit cats, but that I think that that, like I feel I feel lucky to have that connection with my world and to to noticing, like to have my attention drawn to things that I wouldn't otherwise notice.
Speaker 1:Thanks so much for listening to the podcast. 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 Middletown Centre. If you'd like to know more about Middletown, you can find us on X at Autism Centre and Facebook and Instagram at Middletown Centre for Autism. Go easy until next time.