Tourette Syndrome

Introduction to Topic

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1:08Hello. Now, before I go on with the programme, I should say you may hear some noises, like a cat's meow or a wolf whistle. All will become clear very soon. So today we're going to talk about something that I know very little about other than what I've seen and heard on TV. But as is the way with medical and psychological terms that become known, people in all walks of life take hold of them and throw them about. Think of abbreviations and words like PTSD, ADHD, OCD, or on the spectrum.

1:41I hear people drop these into conversation, saying things like, I think I must have been suffering from a bit of PTSD. Oh yeah, he's OCD. Or I've often wondered if she's on the spectrum. This also applies to the term that we're going to talk about today, Tourette's syndrome. And my guest is Ione Georgakis, who's an occupational therapist and the advocacy and therapies manager for Tourette Action. She uses her lived and professional experience for myth-busting, as well as reducing barriers to engagement and wellbeing.

Guest Introduction

2:12Welcome to the programme, Ione. Thank you for having me. Now, just to begin with, if you can clear this up for me, is it Tourette's syndrome or Tourette syndrome? That's a good starting question. I have to say that both terms absolutely work. I tend to use Tourette's syndrome, but I think in the medical world and in research, they often use Tourette's syndrome. But it's named after a French neurologist, so Gilles de la Tourette, butchered that. So the possessive and the non-possessive both work for it. Thank you, yeah.

2:43Now, I'm the perfect person with whom you can do some myth-busting, Ione. I'm pretty sure I only know the myths. As I go about, I hear people throwing the term Tourette's about. It's actually not much more than a joke explanation for suddenly swearing in public, for themselves even. You know, someone will swear and then go, ha, ha, I must have Tourette's. So let's start with some of these myths. What do people like me often think Tourette's is? I think that's a very good question,

3:14and I think it's a condition that's still probably got more myths surrounding it than facts. I think you already touched on quite a big one there. And the biggest myth is that everyone with this condition swears. In fact, it is a minority of people with tics and Tourette's who experience this feature of the condition. And this feature is called coprophenomena. And copro is the Greek term for poo or faeces. So essentially it includes coprolalia, which is laelia being speech, so poo speech.

3:46And then we've got the gestures, copopraxia, and even copographia, which is the compulsion to draw or write obscenities. And this part of the condition impacts, what, 15% to 20% of people with Tourette's? But it makes up 100% of what we see in the media, on our TV screens. It's the part of the condition that activates that fascination and curiosity in people and that triggers often a kind of a laugh, a humour response. And how did that come about?

4:17Was that because some people have... I seem to remember somebody on Big Brother. Oh, yes. Yeah, Pete Bennett. So here, I'm a classic case, you see. I'm a victim of the mass media doing it. So I remember watching him and then thinking, well, this is quite curious. And, of course, some people end up thinking it's artificial. Somehow or other, somebody's putting it on. Yes. I mean, Pete from Big Brother is a really great example. I'm part of a generation where that was my entire idea of what Tourette's is. I saw Pete from Big Brother on TV. His tics didn't really align with my experience of Tourette's.

4:49And so I didn't recognise what could be going on for me in that. But he was a really important part of bringing Tourette's to the mainstream media, bringing it into conversation, bringing it into the public eye in a way that wasn't easily done. And so I think it's really important that we have strong, wonderful characters on our screens with this condition, but that we also show the other sides of it. And we don't only focus on the tics as a punchline, laughing at, you know, it's about laughing with, it's about learning, it's about making sure that that content's embedded with facts and lived experience rather than this kind of sensationalised viewing.

5:26So let me put you in the seminar room and there's a group of people round, maybe from the media. I'm from the media. Fill me in. I'm a blank sheet in the seminar room. Marvellous. Let's fill you in then.

Understanding Tourette's

5:37So I think I'd start by saying, you know, Tourette's isn't rare. Tourette's is sort of affects around 300,000 people in the UK, about 1% of the international population. And I tend to describe it as an inherited neurodevelopmental condition. I think in this neurodiversity movement that we're in at the moment, it fits really well. It kind of under this umbrella of autism, ADHD, kind of neuro differences. For this diagnosis, you need motor and vocal tics. And it's this beautiful, unique combination of sounds and movements that persist for over a year,

6:12typically starting in childhood, that makes it Tourette's syndrome. And I think it's important to note here that it is about length of symptoms, because if, you know, if you've got children, if you've worked with children, tics are a really common part of child development. And actually, I think about 25% of children will have tics for a short period of time, and then they grow out of them. And in my naivety, I might use a word like synapses firing off or some phrase like that, because I've got a vision of the brain, and somehow or other something's sparking,

6:45and that that sends you to do something which, well, I might do under controlled circumstances. So, you know, I just heard you do a cat's meow at that point. Well, I'm not bad at cat meowing myself, but I think I do it totally voluntarily.

Brain Function

7:00So fill me in on the brain. What is it doing when you say meow like a cat? It's a tricky one, and it's an area of ever-emerging research where we're slowly starting to understand a little bit more about the kind of neuromechanisms involved. But actually, what I'd say is some of these visual descriptors of kind of firing synapses and signals feels that actually that fits it quite well. So we're starting to build a better understanding of it. And I think the current research suggests that it tends to be differences in the way that certain brain circuits work

7:33and those sort of connective pathways, which is absolutely what you were sort of getting at there. The basal ganglia, which helps us to regulate movement and our habits. Where are they? So the basal ganglia is in the back and the old part of the brain. And then we've got the frontal areas of the brain, which are involved in planning and inhibition and control. And we feel like those are the parts of the brain that are most involved in ticks. I am not a neuroscientist. So please take all of this with a lovely, lovely pinch of salt. But really, I think in simple terms, it's about us finding it difficult to filter out unwanted movements and sounds.

8:09And all of our brains are constantly getting these below threshold signals about things in our environment. And they're meaningless. So we don't need to pick them up and turn them into sounds or movements. But these sort of hyper receptive brains that we often see in ticks and Tourette's mean that those very, very low level signals can be actualised and turned into a sound or a movement. And are there variations and degrees of experiencing Tourette's? Are there people who say, make sounds or say things quite infrequently and others, you know, perhaps almost every five seconds?

8:43Yeah, absolutely. I think, hey, hey, hey, Tourette sits on a spectrum of severity from incredibly mild, potentially quite infrequent symptoms to very, very frequent, very debilitating, very complex symptoms. So just for kind of for context, the diagnostic criteria to get a diagnosis of Tourette's, you need at least two motor ticks, so movement ticks and at least one sound or vocal tick. And they have to have been there for over a year. So actually, when we think about what these ticks could be, that could be quite subtle.

9:16So I could raise my eyebrows and I could purse my lips together and I could clear my throat quite frequently. And you could just think, oh, this person's constantly about to say a small speech. And you wouldn't even know, you wouldn't recognise, you wouldn't necessarily associate my symptoms with ticks and Tourette's. But you meet the criteria. Welcome to the community. And on the other end of that, we've got people who are having very, very, very, very frequent, very big, quite violent body movements that impact their limbs, their head, their neck.

9:47They may have coprolalia. So they may be having these verbal utterances of quite offensive or upsetting words. They might be hitting themselves. And, you know, these could be happening hundreds of thousands of times a day. Some people have a great deal of kind of humour and joy and connection around their condition. And other people feel a great deal of shame and avoidance and anxiety. And that is their very real and relevant experience based on how their condition impacts them and how the world has responded to their ticks and treated them as a result of them.

Personal Experience

10:17Can I ask about you? Where do I sit on that? Well, yeah. So let's go back to you aged four, five, six. Let's start there. Your mum and dad, they're looking at you, wondering about you. I find it quite hard to think about when my first tick was because I think for many years I had small ticks that weren't recognised as ticks. I certainly didn't notice them. My first ticks were very small movements in my face. So I used to purse my lips and I used to roll my eyes and I'd scrunch my lip to my nose.

10:51And you're doing that just now. And I'm doing it as I say it because I'm reminding my body of how wonderful those things feel. In my early childhood, I was not bothered by them. I didn't really notice them. Other people didn't particularly notice them. My mum had ticks and twitches in her childhood, just a part of life. She grew out of them. And I kind of lived in the understanding that I was going to grow out of them too. I didn't need to overly focus on these little things until they started to become a bother. And until they started... How old were you then? I think the dreaded teenage years is where things started to get a bit more tricky.

11:24I have ADHD. I had quite extreme childhood OCD. So I had some other things that commonly come alongside Tourette's. But those things were maybe more noticeable and had a bigger impact on my ability to learn. And then over time, I really remember sitting on a bench with a girl who was a few years older than me. And she said, what is that noise you're doing there? And I said, what noise am I doing? And I think I'd been sort of clearing the air from the back of my nose, trying to clear this sort of internal itch. And that was where the kind of external observation, where people started to notice those sounds.

11:58And I was becoming a lot more self-conscious. But I didn't yet have enough awareness to be able to stop it. I only had enough awareness to be able to notice, oh, this is happening. And I'm self-conscious about it. I started down the route of diagnosis and that ended up being really helpful for me because it's very, very hard to explain yourself and advocate for yourself if you don't know why you're doing what you're doing. So you had a name from a doctor saying you have got Tourette's. Yeah, so it turned from a tick disorder diagnosis when I was sort of 14 or 15 alongside my ADHD to then being about 17 or 18 and then transferring that to a Tourette's diagnosis.

12:37My earlier tics were just movements. So they were only motor tics. And in order for Tourette's to be considered, it has to be a combination of sounds and movements. If I just stuck with the movements, then I would have had maybe a motor tick disorder diagnosis. Now, you seem to be saying that new noises appear and presumably some old noises go away. I think I'm picking up from what you're saying. Yeah, it can feel like a game of whack-a-mole. You know, you think you know your tick repertoire. You think you know what's about to come out.

13:08And then, boom, this fresh, new, confusing, interesting, funny, beautiful or bizarre tick comes out. And you say, oh, hello, welcome. That tick might come once and never come again. And I might have that tick for a month, a week, a year. Yeah, I've had some ticks for 10 years, 15 years. The more I try to work it out, the less clear it becomes. And you hear them, do you? That's another great question. So, so often I will tick and someone will respond to my tick or they will repeat it back to me. And I'll go, what?

13:38Because to me, they've just said a bizarre sentence because I haven't processed the fact that I've ticked because it's happening at such an automatic level. I'm not giving it any attention in the same way that when you blink, you don't think about the fact that you've just blinked. Thank God. Or your attention would constantly be on your eyes. When I tick, my body is, it's not a real thought. It's not a real act. There was no conscious process to it. And so it hasn't entered the systems that allow me to be that aware of it. When I was younger, I had ticks that I didn't know what they meant. So I used to tick haberdashery and sycophant.

14:11And I had to Google what those words were. I had no idea. But they'd gone in somewhere at some point in my existence. I'd read it. I'd seen it. I'd heard it. And it went in. And it came back out completely in the wrong context, of course. But that was a tick. That's extraordinary, isn't it? That the brain has got this. So consciously, you didn't know haberdashery. Yeah, no idea. But there it was. Up it came. Yeah. And what about stressful situations? I don't know. But like coming here, you're talking to a complete stranger we've never met before.

14:44I'm asking you questions on the radio, very prestige, you know, Radio 4 and all that. Does that pose any kind of problem? If I said to you, I don't know, half a million people are listening to this. You see, I'm deliberately trying to stress you. So this is really utterly unethical. All right. So does that pose a problem? Do you know what? Ironically, less of a problem than getting here. So I would rather speak to you in this space about this condition. That's a big part of what I do in my role at Tourette's Action. And I can speak quite confidently and comfortably about my condition.

15:17And I enjoy doing it. I'm passionate about it. The lead up to it, very, very difficult. The kind of pre-anxiety can be really tough. And the travel here. You know, it's those kind of things that are a bigger challenge to me than, you know, I could go up on stage and talk to a thousand people and it wouldn't really blink an eye. So why travel? You mean whether you're going to miss the train, whether you've got the ticket? Trapped in a metal tube with lots of strangers and who I'm going to meow at or stick my tongue out to or, you know, do something that could cause confusion or distress from someone that might warrant a negative response.

15:50And I've got, you know, I, like most adults with Tourette's, have got this whole repertoire of experiences in our life that were really negative or scary or anxiety provoking. I've been on a train and it's been the evening and there's been people who have obviously been drinking and I'm ticking and they're mimicking and mocking and they're videoing and you're sort of trapped in that space. And that is enough to say, I never want to get on a train again. I'm in the tube and I'm ticking and someone's taking secret photos or they're doing it back to me. Or I feel unsafe because they potentially feel unsafe.

16:21So do you feel forced to explain at that point? Do you say, excuse me? I mean, it does very much depend on the situation, the setting and what I've got in the tank that day, because I've dealt with this for many years and sometimes it's just easier to go and kind of get away from that situation. If you feel like someone isn't going to be receptive or remotely interested in it, if they're drunk, if they're feeling aggressive, let's not bother. I do try hard now to educate people where I can, advocates in my job role, and I do feel quite well equipped to do that.

16:52So I would say, hey, listen, I've got Tourette's. I don't mean to do it or say it. 99% of the time, people respond quite positively to that. Oh, that's good. I've recently started using the term Tourette's syndrome because people tend to think of that maybe as more valid. If I go Tourette's, people go, oh, yeah, we've all got Tourette's. Bloody hell. And I go, no, no, I have Tourette's syndrome. And then they think, oh, fair, that might actually be, you might be telling the truth there. And do you see it as a societal problem? Is it the way in which all of us in society view these things?

17:25Absolutely. I think that the most of the barriers, most of the anxiety, most of the challenges that surround Tourette's is existing in a world that doesn't understand it, doesn't accommodate it, doesn't allow for it. Just like living with most areas of neurodiversity, really. Or afraid of it. Afraid of it. Scared of it. They're stigmatising it. And I so strongly believe that the most sustainable, effective way of reducing the stigma and the challenges that people with Tourette's face is increasing public understanding. Because the aggression, the confusion, the distressing situations, in my experience, come from a misunderstanding.

17:59You don't expect to hear that noise in that space. So you're looking around for it. Just as we walked in, you were looking for the cat. And you said, yeah, where's the cat? And I said, Michael, I'm the cat. And I have that all the time. I spend a large portion of my life watching people looking under tables, checking trees for distressed lost cats, knowing it's me. Sometimes I tell them, sometimes I don't. You've got to get your kicks somewhere. But if people were more quickly and able to go, oh, I know that funny noise, that kind of arm movement, that's probably a tick, isn't it?

18:30We've learned about that. You can then ignore it and filter it out and stop paying attention. But there are lots of other factors, I think, which influence how ticks are responded to. And I've had a lot of funny, beautiful, creative situations in my life as a result of ticks. But I really recognise my privilege in how people respond to my ticks. So I think a few years ago, I was on a beach. I was with my mother and my sister. We were on holiday in Croatia. And we were just on the precipice between the family beach and the nudist beach.

19:01We hadn't realised where we'd set up. OK, we're not going to move. We've got a good spot. Later in the day, an elderly gentleman in a wonderfully bright pair of speedos walks past. And of course, I wolf whistle at that exact moment. And he stops, hands on hips, big smile on his face. Oh, hello! Introduces himself, offers for my family to come over to the nudist side of the beach with him. We politely decline. He goes on his way and we all burst out laughing on the sand.

19:31And then I thought, bloody hell, what if I was an adult man and that was your teenage daughter who just walked past in her bikini and I wolf whistled? Would you have, you know, would people give the time to reflect on whether that was involuntary? Would they smile at it? Would they laugh at it? Quite possibly not because they'd feel threatened. They'd feel unsafe. If they'd be defending someone, whereas I wolf whistle at my colleagues at work and they go, why, thank you. I wolf whistle at, you know, men on scaffolding doing their DIY jobs and they all suddenly stop and go, hold on, we're supposed to be the other way around.

20:05And again, I am safer because maybe I'm perceived by society as less threatening or less risky. Lots of people aren't. Come on. Yes. Zaxby's Giant Chicken Finger Wraps are no snack. In fact, they're so big, they get their own menu. Get one in your choice of Asians in Zation, Buffalo Blue, and Chicken Bacon Ranch. And you know they're coming packed with three crispy, hand-breaded famous fingers, fresh ingredients, and their signature sauce all wrapped to perfection.

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21:20And what do you think about the labels? What do you think about the fact that we have this name? For you personally, that was quite useful for you. Is that general in society, do you think? Do we need the names? Yeah, I mean, I think it's a really good question. And it's this ongoing argument, you know, do we need labels? Do we need to pathologise everyone's experience and difference? And actually, annoyingly, quite possibly, yes. And if we lived in a society that was equipped to adapt for everyone who needed it,

21:50whether that was based on your gender, your physical health, your economic status, then marvellous. Maybe we wouldn't need individual labels in order to access support. But without the right label, without the right diagnosis, you lose out on your community of support. You lose out on access to the right medications, to the right therapies, to grants, to benefits, to reasonable adjustments at work and education. And all of those things are the things that help people live well with their condition. And if having the diagnosis is the gatekeeper to getting that support, then we must give the diagnosis.

22:22And I have come across professionals who have said he fits the criteria for Tourette's, but we're not going to give that diagnosis. It's incredibly stigmatised. We don't want it to impact his life. And I say to them, this is on you. That stigma lies in you. And you giving that narrative perpetuates it and increases it and makes the world a harder place for people with Tourette's to live in. What other diagnoses do we do that for? You know, technically, technically, you aren't managing your blood sugar very well and your incident system is not working well.

22:53But we're not going to give you the diabetes, because it's stigmatised. No, of course you wouldn't. You would let someone access their people and the right support and the language to self-advocate. But we're still doing that in Tourette. So hopefully, hopefully we can shift that into a, yeah. Two more terms. I may mispronounce them, so you can correct me. Echolalia and Palalalia. Ah, yes. Our wonderful kind of alternative, not alternative tics, but they kind of fit within the tic family in Tourette's. So first of all, we've got Echolalia.

23:25OK, and just like the name suggests, you're echoing speech. So speech is Lalia, echo, echo of speech. So you might say, come Ionian, sit down. And I might say, come and sit down. I might immediately echo that back to you. Ah, I've met children. I've met one or two children like that in schools. Definitely would have. It's incredibly common and it's also, it's an incredibly common feature in loads of other neurodevelopmental conditions, in autistic individuals, people with ADHD. And to some extent, just humans. You know, we love good sounds. We love to repeat things.

23:56I was very tempted to repeat your meow. There we go. And lots of people do. You've caught me at it. I work with teenagers, so it happens a lot. So we've got this Echolalia. And as I said, it might be immediate. So, you know, come and sit down, come and sit down. But it can be really, really delayed as well. So I have an Echolalic tick that I've had since I was about 13. And I go, I go, buy Toyota, sponsors T4. And I think it was a TV advert when I was in school. The channel isn't even on television anymore. But that comes out in my tick repertoire a couple of times a week and has done for 20-odd years.

24:32And then we've got Palolalia. And Palolalia is very similar, but you're repeating your own words or your own gestures. So someone might have the tick, chicken, and they might have to, chicken, chicken, chicken, chicken. They might say that tick a certain number of times. They might be repeating it. Now, I don't know whether this will ring a bell. In an earlier programme, I spoke to someone who researches people with different kinds of blockages in their speech. And one thing I took from that interview was the way in which some of his respondents withdrew from social interaction.

25:07They self-censored and cut themselves out of conversations. And it was through a mix of self-consciousness and shame, I think. Yes. Would that sort of thing apply to some people with Tourette's? Yeah, sadly, I think it's very, very relevant. And I think it tends to be, yeah, it's a narrative that I hear all the time, right from childhood, right into adulthood. People tend to make themselves, their worlds, smaller. They'll disengage with things that they feel might be risky or unavailable to them.

25:38They might stop accessing certain environments, certain activities. There's a lot of internal stigma related to the condition, a lot of shame, a lot of embarrassment. And just kind of I encourage people to take a minute to experience and reflect on what it would be like to have a condition that makes you utter things that are so different to what you actually believe, what you actually feel, your actual philosophy. Because whether people want to or not, they do hold you somewhat accountable. They do slightly associate what you say, even if they truly believe it's involuntary, then they really get it.

26:12We're humans, you know, and it's really, really tough. So people, yeah, people feel ashamed, people feel embarrassed and they stop doing things. They make their world smaller. And actually, if anything, we need to probably be doing the opposite because the world needs you and you offer so much to the world and joy and connection and creativity that, yeah, it's a very sad thing that people stop doing all the awesome things that they should be. So Ione is at home on her own and you're thinking, I could work at this.

26:44Is there something to work at? Is there a this that you can work at on your own at home? And is it very boring, like me and my squats and arm exercises? I think you and your squats sound a lot more entertaining. But yes, I mean, I'm in a slightly privileged position because I'm trained in tick therapies. I'm trained to administer them and support people to use those strategies. In getting that training, I've been able to self-apply a lot of those strategies to my life. Some of the biggest and most effective for me has been in when I'm in my safe and familiar environment.

27:17I put less resistance to my ticks. I kind of I call it resistance is futile. And what I've noticed is the more I try to resist or hold in my ticks when they do come out, they tend to explode out. They tend to be faster and louder and quite shocking to the point that I'd often give myself a little fear response because it would come out so kind of loud. And that would mean that people at the other end of the tube station can hear me and, you know, it echoes savagely. But what I've noticed is I am in a safe enough environment to not be overly worried about what's going to come out.

27:49I stop the build up and resistance and I just let it come and it comes in regular speech. So I say, happy birthday. And people say, oh, thank you. It's not my birthday, but thank you. It's not me going, happy birthday. You know, and then everyone's turning around and going, oh, thanks. It's not my birthday. And that has been super helpful for me on a personal front. And there's lots of weird, wonderful, creative ways of managing ticks that don't necessarily sit within a formal therapy, but that can help reduce, I guess, the risk of offensive ticks or the likelihood of them occurring, some more successfully than others.

28:23But I have, I worked quite hard some years ago to redirect or change my tick. So I was finding it hard to stop them coming out completely. But once they'd started to come out and I could realise what that tick was, I found if I could add something to the end of it or adapt the word and make it slightly less shocking. Give me an example. OK. We'll see if this can be included. What did we have? We had country lanes. We had for coughs and colds take Benadryl. We had Fatima Whipbreads. So we just found with these kind of small additions or shifts, I could turn it into something that was quite upsetting or shocking or distressing,

29:00into something that maybe people knew what I was initially going for, but I'd done some good trying to adapt it. Well, people say it's the origin of things like fiddlesticks. There we go. Yeah. Yes. And now a word for our listeners. Word of mouth has teamed up with the Open University. You may know that already. Actually, linguists from the Open University recently sat down with me, yes, for a conversation about the words we use, where I talk about my own language journey and what I've learned from the stories behind how we speak. To listen to this, visit the BBC Radio 4 Word of Mouth page and follow the links to the Open University.

29:35Ione Georgiakis, thanks very much indeed for coming to Word of Mouth and sharing your work on Tourette's Syndrome. Thank you so much for having me. We'll see you next time.

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