Tourette Syndrome

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Hello. 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. Well, 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. I 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 O C D. Oh 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 syndrome. And my guest is Ioni Georgiarkis, who's an occupational therapist and the advocacy and therapies manager for Tourette Action.

She uses her lived and professional experience in the for myth busting, as well as reducing barriers to engagement and well being. Welcome to the programme, Ione. Thank you for having me. Now just to begin with, uh if you can clear this up for me, is it Tourette's syndrome or Tourette's It's a good starting question. Um I have to say that both terms absolutely work.

I tend to use Tourette's syndrome but I think in in the medical world and in research they often use Tourette syndrome. But it's it's named after a French neurologist, so Gilles de la Tourette Felly'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n

Thank you, yeah. Now I'm the perfect person with whom you can do some myth busting, only uh I'm pretty sure I only know the myth. Uh as I go about I hear people throwing the term Tourette's about. It's actually not much more than a than a joke explanation for suddenly swearing in public. For themselves even, you know, someone'll swear and then go, Ah, I must have Tourette. So let's start with some of these myths. What do people like me often think Tourette is?

I think that's a very good question and 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 the biggest myth is that everyone with this condition swears.

In fact, it is a a minority of people with ticks and tourette's who experience this feature of the condition and this feature is called copro phenomena. And copro is the the Greek term for for poo or feces, so essentially it Um it includes copro lia which is Lalia being speech so

speech and then we've got the gestures, so copopraxia and even copographia, which is the compulsion to draw um or write obscenities. And this part of the condition impact What fifteen to twenty percent of people with Tourette's but it makes up A hundred percent of what we see is in the media, on our T V 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 humor response. And how did that come about? Was that because some people have prepared I seem to remember somebody on Big Brother. Oh yes. Yeah, Pete Benny. Well, this is quite curious. And uh of course some people end up thinking it's artificial that somehow or other somebody's putting it on.

I mean Pete from Big Brother is a 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 T V. His tics didn't really align with my experience of Tourette's and so I didn't Rekognise what could be going on for me in that.

But he was a a 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, huh huh, the ticks 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. So 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 I'm a blank sheet in the seminar room. Marvellous. Let's fill you in then. So I think I'd start by saying, you know, Tourette's isn't rare. Tourette's is sort of affects around three hundred thousand people in the UK, about one percent of the international population and I tend to describe it as an inherited neurodevelopmental condition.

I think w 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 ticks, and it's this beautiful, unique combination of sounds and movements that persist.

for over a year, typically starting in childhood, that makes it Tourette syndrome. And I think it's important to note here that it's it is about length of symptoms because if you know, if you've if you've got children, if you've worked with children, ticks

are a really common part of child development and actually I think about twenty five percent of children will have ticks for a short period of time and then they grow out of them. And in my naivety I I I might use a word like synapses firing off or s some phrase like that, because I've got a a vision of the brain, um and somehow other something sparking and that

sends you to do something which well I might do i under controlled circumstances. So, you know, I just heard you do a cat's meow at that point. Well I I'm not bad at cat meowing myself, but I think I do it Totally voluntary. So fill me in on the brain, what is it doing when you say meow like a cat? ever emerging research, we're 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 s synapses and signals feels that actually that that that fits it quite well. So we're starting to build a better understanding of it. And I think uh the current research suggests that it tends to be differences in the way that certain brain circuits work and those sort of connective pathways, which is absolutely what you were s sort of getting out there. The basal ganglia, which helps us to regulate movement and um our habits.

Where 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 are the parts of the brain that are most involved in 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 it's about Mae'n ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud.

ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud hynny hyper receptive brains that we often see in ticks and tourette 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 uh make sounds or or say things uh quite infrequently and others y you know, perhaps almost every five seconds. Yeah, absolutely. I think hey, hey, hey Turect 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 tick. 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. So I could raise my eyebrows and I could crus my lips together And I could uh 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 tics 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. They 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 j joy and connection around their condition and other people feel a great deal of shame and avoidance and anxiety. And that is their their very real and and relevant yeah, experience based on how their condition impacts them and how the world

has responded to their tics and treated them as a result of them. Can I ask about you? W where do I sit on that, eh? Well, yeah, so um let's go back to you, Age.

Four, five, six, let's start there. Um your mum and dad uh they're looking at you, wondering about you? I find it quite hard when to think about when my first tick was because I think for many years I had small ticks that

ymwneud â'r tics. Rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n purse my lips and I used to roll my eyes and I'd scrunch my lip to th to my nose And you're doing that just and I'm doing it as I say it'cause I'm reminding my body of how wonderful those 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 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 gonna grow out of them too. I didn't need to overly focus on these these little things. Until they started b to become a bother. And un until they started How old were you then? I think the dreaded teenage years is where things started to get a bit more tricky.

I have ADHD, I had quite extreme childhood O C D so I had some other things that commonly come alongside Tureps, but those things were maybe more noticeable um and had a bigger impact on my ability to learn. And then over time

I 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, and 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 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 from a doctor saying you have got

Yeah, so it turned from a tick disorder diagnosis when I was sort of fourteen or fifteen alongside my ADHD, to then being about seventeen or eighteen and then t transferring that to a Tourette diagnosis. My earlier ticks were just movements, so they were only motorticks, 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 motortic disorder diagnosis.

Now you seem to be saying that new noises appear and Presumably some old noises go away. That's i I think I'm picking up from what you're saying. It can feel like a game of whack a mole, you know. You you think you know your tick repertoire, you think you know what's about to come out, and 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. I've had some ticks for ten years, fifteen 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? 'Cause 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. And 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. That's extraordinary, isn't it? That the the brain has got this. So consciously you didn't know habadashery. But there it was, it up it came.

And what about stressful situations? I I I don't know, but like coming here, you're talking to a complete stranger we've never met before, and I'm asking you questions on the radio, very prestige, you know, Radio four 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, so You see, I'm I'm deliberately trying to stress you, so I this is really utterly unethical. All right. So it does that pose a problem?

Um, 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. a big part of what I do in my role at Tourette's action and I can speak quite confidently and comfortably about about my condition and I 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 I wouldn't really blink an eye. So why travel? You mean whether you're gonna miss the train, whether you've got tickets? Trapped in a metal tube with lots of strangers and w who I gonna 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 and 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 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. So it

Do you feel forced to explain at that point? Do you say, Excuse me? I mean it's it it does very much depend on the situation, the setting and what I've got in the tank that day because I've I've I've dealt with this for many years and sometimes it's just easier to go and 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 where I can, advocates in my job role, and I do feel quite well equipped to do that, so I would say, Hey listen, I've got Tourette's i I don't mean to do it or say it.

Ninety-nine percent of the time people respond quite positively to that. Oh, that's good. I've recently started using the term Tourette syndrome because people tend to think of that maybe as more valid. If I go Tourette's, people go, Oh yeah, we've all we've all got Tourette! Bloody hell! And I go, No, no, I I have Tourette's syndrome and then they think, Oh fair, that might actually be you might be telling the truth there. Do you see it as a societal problem?

all of us in society view these things? Absolutely. I think that the most of the barriers, most of the anxiety, most of the challenges that surround Teresse 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 stigmatizing it. And I so strongly believe that 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. You 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 distress lost cats.

knowing it's me, sometimes I tell them, sometimes I don't. You gotta get your kick somewhere. But If people were more quickly and able you know, able to go, Oh, I know what you know, that funny noise, that that kind of arm movement, that's probably a tick, isn't it? We've learnt about that.

you can then ignore it and filter it out and stop paying it attention. But there are there are lots of other factors I think which influence how ticks are are responded to and like I've I've had a lot of funny, beautiful, creative situations in my life as a result of tips. But I really recognise my privilege in how people respond to my ticks. So I think about a few years ago I was on a beach, I was with my mother and my sister. We're on holiday in Croatia.

And we were just on the precipice between the the family beach and the nudist beach. We hadn't realised where we'd set up. Okay, we're not gonna 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 he I will whistle. At that exact moment. And he stops, hands on hips, big smile on his face. Ho ho, hello introduces himself, offers i for my family to come over.

to the nudist side of the beach with him. We politefully decline, he goes on his way, and we all burst out laughing on the sand. And 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 st you know, would people give the time to reflect on whether that was involuntary? W would they smile at it, would they laugh at it?

Quite possibly not,'cause they'd feel threatened, they'd feel unsafe, they'd be defending someone. Whereas I wolf whistle at my colleagues at work and they go, Why, thank you. I w 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. And again, I am safer because maybe I'm perceived by society as less threatening or less risky. And lots of people aren't. Yes.

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And what do you think about the labels? What do you think about the fact that we have this name? I for you personally. That was qu quite useful for you. Is that general in society do you think? Do we need the the names? Yeah, I mean I think it's a really good question and it's it's this ongoing argument, you know. Do we need labels? Do we need to pathologise everyone's experience and different?

And actually, annoyingly, quite possibly, yes. And if we lived in a society that was equipped to adapt for everyone who needed it, whether 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.

ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl. And I have come across professionals who have said he fits the criteria for Tourette's, but we're not gonna give that diagnosis. It's incredibly stigmatized. 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. w with Tourette's to live in. What other diagnoses do we do that for? You know, oh you technically technically you aren't managing your blood sugar very well and your insulin system is is not working well, but we're not gonna give you the diabetes.

Libre because it's stigmatized. 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.

I may uh Ah yes, are wonderful kind of um al alternative not alternative ticks, but they kind of fit within the the tick family interet. Um so first of all we've got echo Lalia, okay, and just like the name suggests, you're echoing speech. So speech is Lalia, echo, echo of speech. So you might say Ionians sit down and I might say, Come and sit down I might immediately echo that back to the big thing. Definitely would have.

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. Um I was very tempted to repeat your meows. I work with teenagers so it happens a lot. So we've got this Echolelia 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 tip.

that I've had since I was about thirteen, and I go, I go, buy Toyota, sponsors T four And I think it was a r it was a T V 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 twenty odd years. And then we've got Palalalia. And palalalia 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'll ring a bell. In in an earlier programme um I spoke to someone who researches people with different kinds of blockages in their speech. And one thing I took from that interest

you uh was the way in which some of his respondents withdrew from social interaction. They self censored and cut themselves out of conversations, and it was through a mix of Uh, self consciousness and shame, I think. Yes. Would that sort of thing apply to some people with Tourette? Yeah, sadly I think it's very, very relevant and I think it tends to be Yeah, it's it's a narrative that I hear all the time, f right from childhood, right into adulthood. People

tend to make themselves their their worlds smaller. They'll s they'll disengage with things that they feel might be risky or unavailable to them. They 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 actually 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. We're humans, you know, and they're it's it's it's yeah, it's really, really tough. So people Yeah, people feel ashamed, people feel embarrassed and they stop doing things. They make their 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 it's a very sad thing that that people stop doing all the awesome things that they should be. So I only've at home on her own and uh you're thinking I could work at this Is there something to work at? Is there a this that you can work at on your own at home and put it on? Is it very boring like like me and my squats and um arm exercises? I think you you and your squats sound a lot more entertaining. Um but

Yes, I mean I'm I'm in a slightly privileged position'cause I'm 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 um in when I'm in my safe and familiar environment, I I put less resistance to my ticks. I kind of I I call it resistance as 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 Woo fear response because it would come out so kind of loud and 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 so I am in a safe enough environment to not be overly worried about what's gonna come out.

I 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, Well thanks, it's not my birthday And that has been super helpful for me on a on a personal front and and there's lots of weird, wonderful creative ways of of managing tics that are

don't necessarily sit within a a a formal therapy but that can help produce like RISK OF OFFENSIVE TIT or the likelihood of them occurring, some more successfully than others, but I have I worked quite hard some years ago to redirect or change my ticks. 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 I could add something to the end of it or adapt the word and make it slightly less shocking. G give me an example. Okay. We'll see if this can be included. What did we have? We had country lanes? We had For coughs and colds tape Benadryl. We had fatty mawet breads, so we just found with these kind of small additions or ships. I could turn it into something that was quite upsetting or shocking or distressing.

into 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. Um And now a word for our listeners. Um word of mouth has teamed up with the Open University. You may know that already.

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 learnt from the stories behind how we speak. To listen to this, visit the BBC Radio for Word of Mouth page and follow the links to the Open University. Ioni George Arkis, thanks very much indeed for coming to Word of Mouth and sharing your work on Tourette Syndrome. Thank you so much for having me.

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