After our last chat, it just opened up so many questions for me that I, well, I suppose I didn't know I had this. stereotypical thought about Tourette's and what it actually was and how you would recognize it. And you just went, yeah, not really. Some people have that and Just

Absolutely. And do you know what Kev, you're not alone with that. Unless you kind of, you work in the field of Tourette's or you directly know and love someone with this beautiful and bizarre condition, you generally don't know about it as much. You know, the public understanding of Tourette's does not meet the level of kind of comparable neurodivergent conditions like autism or ADHD, which generally Nowadays we're, we're making some great strides and kind of understanding it and being able to support it really early on and recognize it really early on. Um, but we have not kind of got that status with Tourette's yet. So we are, as a charity, we're working really hard. You know, dragging it, kicking and screaming, hopefully, to the public eye and to do exactly that myth bust, move away from some of these misconceptions that we have, and hopefully make the world a little bit of a more enjoyable and safer place for people with Tourette's?

And that's exactly the reason we said we need a podcast. We need a podcast. And it is a fascinating subject as well. So when we were talking to you before, we could have just talked all day, couldn't we? There was no stopping us.

Absolutely. And that's part of the joy of my role is that once you get me going talking on this topic, I, uh, I struggle to stop. So I'm definitely in the right position.

So I suppose the best place to start is, what actually is Tourette's? because my personal view before I talk to you was that People just swear, that's Tourette's, that is, you know, that is what I thought it was, and how to recognise it, but it's so much more than that. Excellent.

it's a great place to start. And I think you're not, you're not alone with that misunderstanding there, Kev. So I guess I'll kind of reintroduce myself. So I'm, I'm Ione, as, as was said, and I'm the therapies and advocacy manager at Tourette's Action. And we're the kind of the national charity who, who looks to support people with tics and Tourette's, but also the people around those, those individuals. So their teachers, their parents, their siblings, their driving instructors in this wonderful case, their healthcare professionals, their GPs. Absolutely. Anyone who will listen, um, and in my role, I get to do lots of kind of training and awareness sessions and on some unfortunate occasions, some podcasts and some face to face workshops. And I absolutely love it. So we always kind of, um, we're, we're working hard to be kind of. on the ground in order to give a bit of a voice for people with Tourette's. And, and quite importantly, I think, um, I'm a lived experience advocate. So I have Tourette's syndrome. I also have ADHD and dyslexia. And what we'll learn about in a bit is that often lots of these things come hand in hand. Um, so we kind of, we like to widen that lens when neurodiversity too. So. Tourette's syndrome is, uh, it's a neurological condition, or we might call it a neurodevelopmental condition. And it sits under that kind of umbrella bracket of, uh, conditions like ADHD and autism. Um, but for this kind of, in this condition, the key features are tits. So they are sounds and movements that are involuntary. They're not what someone wants to do. They're what someone's body needs to do. And like you said, Kevin, it's really big myth around Tourette's is that Tourette's is the swearing condition. And, you know, it's, it's not anyone's fault that they have this, this misunderstanding because Tourettes and swearing makes up for 100 percent of what we see on our TV, where they only ever show this kind of extreme side of the condition. And I think it's, it's really important to recognize, it's probably the hardest part of the condition to live with. So what I'll say is that we call the swearing part of the condition coprolalia. So that is a term that kind of means, uh, the verbal the verbal swearing tics, and we also have copapraxia, which is the movement swearing tics, so giving the middle finger, for example. But these symptoms only affect 15 to 20 percent of people with Tourette's. So it is a minority of the Tourette population. But they're definitely the symptoms that have the biggest impact. You know, they're the ones that cause the most issues, the most challenges, the most discrimination. Um, they stop people doing things, they stop people wanting to leave the house and things because they don't feel safe or comfortable, but it's definitely not the majority, um, who have these symptoms. So I think something that we're always desperately and delicately trying to balance is how do we represent this really tricky side of the condition whilst also saying, Hey, There's loads of other stuff going on and there's lots of other things that have a really big impact. It's not only swearing and it's so important for us as a charity and for me as a, as a Touretic individual to move past this because it's become a barrier to people getting diagnosed. Families who come to us and they say, Oh, we went to the GP about little Andy's tics and his tics have been going for years and he has this little noise that he makes and he has these movements he makes, but the GP said, Oh, he's not swearing, don't worry, it can't be Tourette's. And actually, when our medical professionals are still kind of held under this mythical idea that everyone with the condition swears, or that it has to be so, so, so extreme to be Tourette's syndrome. Then we've got all of these people who are living with these symptoms, these really tricky symptoms, but who don't know how to advocate for themselves. They don't know how to explain what's going on for them, and they can't access the support that they need to kind of live the life that they want to. Um, and unfortunately we still live in a. a society and in a time where everything's very diagnosis led, unless you have that, that magical piece of paper from that magical clinic with a 10 year waiting list that says, hey, you've got this condition, then you can't so easily access support at work or in education all throughout your life, really. And you can't find your tribe so easily. You can't say, well, this is the place for me. That's the support group for me. That's the driving instructor for me because he understands my condition. Because if you don't understand your condition, then it's really hard to kind of help other people to get it. So yeah, big part of this is it is not all about swearing, but the kind of the criteria for that Tourette's diagnosis is multiple motor. So a couple of different movement tics and at least one vocal or sound tic. Okay. And those don't have to be words. They can be noises or anything that comes from the vocal cords. So actually, when we think about kind of Tourette's, we might see this, this image of someone who's swearing lots, who's got loads of quite extreme sounds and movements that are quite violent or noticeable, but actually you could gently clear your throat, roll your eyes and scrunch your forehead. And you might've been doing that for three or four years from childhood. And you fit the criteria for Tourette's. So I think it's really important that we say, you know, Tourette's looks very different on everybody. What you see in me versus what you see in others is gonna really vary. And Tourette's just changes naturally throughout, throughout the course of a day, a week, a month, a year, a person's lifetime. So again, if we see someone one day and they're, they're quite ticky, they might be very excited, they might be very stressed. We don't wanna assume that that is their baseline, that's how they live their entire life, and that they're never gonna have more settled periods. Um. Because it's just not the case. And I think that can be a bit of a barrier to, to people, for example, wanting to take on a new client with this condition to teach them something. If they're very nervous in that first interaction and very excited and ticky, you might be thinking, Oh my goodness, how are we going to navigate this safely, but actually once somebody knows you, once somebody knows what they're doing, once. Somebody understands what's expected of them. Their anxiety is slightly reduced. Their tics are going to be slightly more reduced and they're going to be able to function differently or better in that situation. So tics aren't a constant. They, uh, they wax and wane. Ha