So in today's episode, we are delighted to welcome on

Ione Georgioukas from Tourette's Action.

And, Ione, we've had conversations with you

before, and we wish that we'd press

record because we we realized at the end of the conversation what

a brilliant podcast it would have made. So, obviously, we had to invite you on

to do 1 and record it. So thank you for joining us.

Thank you so much for inviting me and for having me on today. 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 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 in kind of understanding it And

being able to support it really early on and recognize it really early

on, but we we have not kinda 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 to the public eye

and to 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?

Brilliant. And that's exactly the reason we said, we need a podcast. We

need a podcast. Indeed. And it

is a fascinating subject as well. So when we were talking to

you before, we could've just talked all day, couldn't we? We

there was no stopping us. Absolutely. And that's part of

the the joy of my role is that once you get me going talking on

this topic, I, I struggle to stop, so I'm definitely in the right position.

Yeah. 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 recognize it, but it's so much more than

that. Absolutely. And 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 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,

Tourette's, but also the people around those those individuals. So their

teachers, their parents, their siblings, their driving instructors in this wonderful

case, They're health care professionals, they're GPs, absolutely

anyone who will listen. And in my role, I get to do

lots of kind of training and awareness and on some unfortunate occasions,

some podcasts and some face to face workshops, and I absolutely

love it. So we always kind of,

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, 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 Lots of these things come hand in hand.

So we kind of we like to widen that lens when we're when we're thinking

about Tourette's and neurodiversity too. So Tourette

syndrome is, it's a neurological condition, or we might call it

a neurodevelopmental condition. And it sits under that kind of

umbrella bracket of, conditions like ADHD

and autism. But for this kind of in

this condition, the key features are ticks. 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,

Keifer, this 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 Tourette's and swearing makes up

for a 100% 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

Palladia. So that is a term that kind of means,

the the verbal the verbal swearing ticks.

X. We also have copapraxia, which is the movement swearing

tics, so given the middle finger, for example. But

these symptoms only affect 15 to 20% 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. 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, 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

Tourettic individual to move past this because it's

become a barrier to people getting diagnosed. So we've had

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 kinda 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 kinda live the life that they want to.

We still live in a 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 kinda 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 pulmodus, a lot a couple of

different movement ticks and at least 1 vocal or sound

tick. Okay? And those don't have to be words. They could 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 have been doing that for 3 or 4 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 through 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, because it's just not the case, and I think that could 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 gonna 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's slightly

reduced, their tics are gonna be slightly more reduced, and they're gonna be able to

function differently or better at in that situation. So tics

aren't a constant. They, they wax and wane. Again, I've

got so many questions for you, ma'am. Loaded up.

So is there anything that springs it on? Or

you know? Is it overwhelm? Is it just a nervous

situation? Is is there anything or is it I suppose I'm

gonna leave it there for a minute because there's probably loads of questions in there

already. So Fab. Yeah. So, I mean, the actual

kind of what causes Tourette's in the 1st place. It's kind of it's

got a genetic component, so it's about 50% heritability. So we

often see tickers in families. We see uncles and dads Parents

who have had tics, maybe not a diagnosis of Tourette's, but then the

child or young person will also have tics. But within the

individual with Tourette's, are lots of things that are widely accepted

or widely reported to impact ticks. And I use the word kind of

positively or negatively, but, actually, we should really say increase or

decrease because I don't really like to put this idea of lots

of ticks being bad and not Many being good because it's just not the

case. So some of the things that we

know can increase tics, and I always start with this Yes. Because I

think it's really important. It's excitement and joy

and anticipation and and the adrenaline that comes with those

emotions and those feelings. We have a real tendency

as parents, carers, professionals, teachers, loved

ones, friends, family of people with with Tourette Syndrome to say, ma,

listen, bud. Are you okay? You're feeling stressed? You're very ticky today.

Your ticks are off the chart. What's going on? And, actually, it could be

that I'm going to Thorpe Park on the weekend. It could be that my

favorite TV show has started a new series. It could be that I'm having a

cracking bowl of pasta for dinner. It could be Absolutely anything that's triggered

that excitement and has consequently impacted and increased the ticks.

And I think we've got to recognize that because we're always sort of

Concerned maybe when we see these increase in tics, and so often they are

a celebration. Talking about tics

Increases tics. So I'm in a I'm in a peculiar job, if I've

gotta be honest. I don't know if it's a blessing or a curse,

but focusing on tics, Being around other people that tick,

increase ticks. So ticks, like lots of other things in life, are

very suggestible. They respond to positive and negative reinforcement.

So when we're focusing on them, we're bringing attention to them, it's

more likely that we will we'll do that thing or that the tics might

be more present. It doesn't mean we shouldn't talk about tics. It doesn't mean we

shouldn't be around other people who tic, but it's something that we just have to

consider when planning life. You know, I wouldn't if I had a colleague with

Tourette's, I wouldn't sit directly next to them in the office, or I would not

get so much work done. And I have to interestingly,

When I'm driving, this is a big consideration. I do we do lots of,

Tourette's inclusive events at Tourette's Action, kind of weekends

for adults or Children or teenagers with the condition, and

they're often all around the country, and they're amazingly well received. But

I can't drive there anymore because I can drive there very safely,

but I can't drive home after the weekend very safely. So that is a kind

of and a really clear and, I guess, a good example of how our

tics can change and also our capacity or our willingness or our

safety when driving can change and how generally people with Tourette's

are quite quite sensitive and thoughtful in, is this

a safe opportunity? Am I about to go into an environment where my tick's gonna

increase? Because I'll drive there safely, But after that weekend,

I'll have to pull over about 18 times on the way home to take it

out. And, actually, for me, that doesn't feel worth it, and I wouldn't recommend it.

So Being around others who tick, talking about focusing on ticks,

are very much gonna, you know, increase those ticks in the short term.

Stress and anxiety, of course, it's not all it's not all joy. Stress

and anxiety can increase any symptoms or the challenges that we have, you know, whether

we get headaches, whether we have IBS, you know, what whatever it might

be, over and under stimulation, so kind

of really busy, loud, unpredictable spaces,

Spaces where you're kind of quite worried about the impact of your tics. Could I

get in trouble? Could I offend someone? Is there lots of

Unpredictable kind of car horns or bright lights going on. Those

things can be, a trigger for ticks. Often, again, in the short

term, you might have a A tick response to a sensory change that

then settles back down. Being really tired can

impact ticks. It can increase ticks. And, obviously, there's also

lots of individual things that people have found will maybe

impact their tick. So me and supermarkets sworn enemies. I

will I'd, you know, do all sorts of creative things to avoid going to a

supermarket because they're a space that really triggers my tics.

They're bright and they're busy and there's lots of people and they're echoey and it's

quiet and, you know, all of the things that create a recipe for disaster for

me. But lots of other people with tics That that doesn't bother them. That's

a fine part of their day, so really recognising that individual

difference. On the other hand, of course, we have things that

decrease our tics. So being relaxed and accepted is a really, really big

one. Being in a space where eve you know everyone gets it. If you say

something that is shocking or unpredictable or peculiar or

creative or witty that they know that it's a tick. It's not your thoughts and

feelings. It's not what you wanted to say. It is Involuntary.

Kind of low stimulus spaces that you know what's going on around

you. You know the people in that Base can be really, really helpful.

Having no consequence to the tick, not not being worried you're gonna be told

off, asked to leave, stared at, looked at, questioned

is is a really, really big one, kind of creating comfortable, safe

spaces. And this is a big one and my absolute favorite one

to kind of talk to and ask people with tics about is focused

and concentrating activities. So lots and lots and

lots and lots of people with tics and Tourette's will find that their tics

reduce significantly when they're engaged in certain tasks. And

there are such a wide range of these asks from kind

of music, sport, singing, cooking, reading,

driving, working, writing, Drawing. You

know, the list goes on. There's as many activities as there are people, but it's

a real kind of hallmark feature of Tourette syndrome. Do you get a

reduction in your tics in certain spaces and activities. And for so many

people, the focus and the attention when driving is is the

perfect kind of recipe for that That tick reduction. And for

for lots of people that I know and I work with and I speak with

who have have Tourette's, they find that their ticks are barely present when they

drive. They might have a little extra tick, a a traffic light. They might let

out some of that movement, but, actually, the focus and the attention that they are

paying, means that their tics naturally reduce, which I think is

fab. We also know that things like exercise and activity

can support a reduction in tics And mindfulness and relaxation, the

2 beautiful buzzwords that help everything in the world, but that we rarely

wanna do. So yeah.

He wants a drink.

There was several things that struck me there. So there

was that lack of diagnosis for some people,

it struck me that that must be an incredibly lonely

place to have a suspicion that

perhaps you have Tourette's, but then to be told

no, you you you're not good enough

Tourette's, to have Tourette's. It's so it's not bad

enough. You can't even do Tourette's properly, so

no. What a great way

to reframe it. Absolutely. And it it really must feel like that. I mean,

it is not rare. It's 1 in a 100 school aged children. It's 300,000

people in the UK At least. And I'd say that that's that statistic is

probably is probably higher, but we we just people aren't

getting diagnosed at the rate And as easily as they could and should

be. So there's all these kind of invisible barriers to people

accessing diagnosis and treatment and and the confidence and the

language that Comes with those, you know, yeah.

Yeah. It must be incredibly lonely not to be able to find your

tribe or the support because we all we need

that, don't we? And then the other thing that struck me was

that excitement and stress and anxiety

are two sides of the same coin. We

often feel those feelings almost

identically in our physical body, but it's all down

to interpretation, isn't it? So it makes complete sense

that those sensations being excited or being anxious,

they feel very similar. So, of course, they would both

increase tics. It it makes sense. Absolutely. That

butterflies in your tummy, you know, is it that actually it's it's excited,

fluttering, or is it, oh, I feel sick and you know, it's it's you're so

right. It's in the interpretation, isn't it? But it feels so similar in the

body. Yeah. Absolutely.

Nerve sighted. Nerve sighted. We you know, we write the web Nerve

Sighted. Oh, I love that. Not sure

if they're nervous or excited or it's a bit of both, then we just

blend them into nerve sighted. Oh, that just start pinching that.

That's fabulous. I'm feeling a bit nerve sighted. Yeah. I'm just

I'm just I mean, yes, that thing that judgment

is everywhere, isn't it? And so even if somebody is

ticking a lot, then immediately we jump that conclusion that it's a

negative, that they're feeling anxious rather than feeling

excited. So just trying to when you have that natural reaction,

just try to pause it a second and then just say, how's your day today?

Find out. Is it being excited, or is it being nervous and anxious,

or or maybe not even knowing. Yeah. Absolutely. And

act one thing I will mention is that something that I consistently hear from

from the Tourette's community is this this Frustration,

when people kind of comment on on that the tick severity

that day. So whether that's positively or negatively, oh, you're not very

ticky today. It's marvelous. You think, oh, well, I'm gonna be now

Al, because you've just you've just reinforced it. You've

reminded my brain that I want and need to do these things. You have just

reactivated it. You know, done. And then on the other

hand of this, when people say, yeah. You are very ticky. Actually, again, you're

increasing attention to it, And you're making someone more self conscious of other

people noticing it. So I kind of generally say, if there's not

risk involved, Then we can just ignore tics,

you know, at any level. Sometimes tics are

funny. Sometimes tics are creative, fucking

bizarre, beautiful, and it's okay to respond in those

moments based on the individual. You know? Everyone has a different way of managing their

condition. I am living with it. Some people's tics,

some people find it really difficult if other people respond, but I generally

encourage kind of just asking because I, for example, if I

had a a quite a bizarre or complex vocal tic, which could

be all sorts, I I

respond. I laugh at my tics. They shock me. They surprise

me. They entertain me, and the the people in

my direct Circle also kind of use humor to navigate

and live with this bizarre condition, but there's such a

difference between kind of saying, do you mind if I respond it's appropriate

to kind of walking past someone and responding without knowing them or being in

their their circle and their system, because I've told people, you know,

we just ignore tics before, and they've taken it to the extreme.

And everyone is in the room pretending it's not happening, and it's like that's

almost as strange as us really

focusing on them and ignoring everything else. So I just it's kind of

taking him with a pinch of salt and recognizing that we've all got different ways

of living with this. And and some tics warrant a bit of a response

and a bit of an interaction, and other tics, we're just gonna let them be.

And it's it's really interesting. It's one that you accept it yourself. You know? I

think that's one of the the big things, but also others Just

accepting who you are because everyone is an individual, aren't they? So although

people might tick, I might sneeze a Or am I coughing

at all? But she's you know, it's it's that's what I'm I was

getting from last time we talked, and you've just confirmed it again to

me, is that, you know, we're all different. We all do stuff.

Absolutely. Accepting that in the 1st place is Yeah.

Everyone's different. Everyone's different. And you're so right. We

tune out as human beings. Like, all of these sounds

and kind of, you people have these little these wiggles. They might stand up a

lot. They might tap their pen incessantly. They might, like you said, have hay fever

and sneeze really loudly and violently 400 times a day,

and we kind of tune it out because we expect to hear it in our

environment. So we we don't necessarily give attention. But

if that's a meow in an office, If that's a, you know, a bird noise

in the supermarket, we're suddenly going, what's going on here? And our

brains are getting confused. And as soon as our because they're trying to keep us

safe and work out there's a there's something that doesn't fit right now. Let's get

curious about it. But once we've got curious about it and we've realized, well,

there's probably not a cat in her pocket. So let's assume that there's

something else going on, and, actually, we don't really need to know about it, so

we can just ignore it. Now we can tune it out. That's That's what we

wanna be kinda doing is is just let letting it be. It's not always

easy. Sometimes ticks are really loud or really shocking or

really distracting. But once we've realized that's a tick,

then we can draw attention away and say, hey, Brain. You're safe. There isn't a

cat. There isn't a tiger. There isn't a lion or a bear. It's just Margaret,

and Margaret's doing nothing. Yeah. Yeah.

So I'm gonna turn it to sort of, like, the driving aspect

of things now, I suppose. So if people were driving,

you know, learning to drive or they're already driving, and

you mentioned some of the things that You know, nerves and stress,

noisy, unpredictability, those those sort of things.

So do you feel like when you're driving in a car, do you feel like

it's a safe place in the car. Me, personally?

Yeah. I was gonna say it's it's it's got everyone. I know everyone's different, but

I suppose when you're learning to drive or you're driving on your own, You you

can choose if you want the radio on. You can choose if there's no

radio on. And does that then constitute that safe place for

you? Great question. And, I mean, I think what I'd say is

it's it's changed, Kev. So I've been driving for nearly 10 years

now, 9 9 years. And And as we know, these things happen

at the beginning of my driving journey. It took all of my mental and physical

focus, and all of my attention now is very tense, and I I

actually didn't particularly enjoy driving. I found it quite a stressful process.

I found learning to drive okay, but now I

I don't driving at all. I really enjoy it. I've acclimatized

to it. I don't have to focus so much, and it is an environment. It

is an activity that naturally reduces is my tics.

I I enjoyed learning to drive. I had a wonderful driving

instructor, a fabulous Scottish man who loved rock music and who'd

always give me a fisherman's friend from We Were Learning. And then he gave me

one of my driving tests, and it became this, like, magical,

powerful medicine, this placebo medicine.

Yeah. Fabulous, Andy. Thank you for getting me through. And I, actually, like

lots of other kind of neurodivergent people, I'm a bit of an all or nothing

girl. So I think it's the ADHD in me, but I decided to do an

intensive driving block. And I did 5 hours a day for 5 days in a

row, and then I did my test because that's how I work. Lots of

other people with especially with Tourette's syndrome might say that is my

nightmare. There's no way that I could manage my

tics. I could in you know, I could focus for that long. So it's

really individual. But I think having a familiar person who really

knows you and gets you on that Journey with you is so

important, and someone who can laugh with you and who can put

you at ease, who can allow you to feel safe, who can allow you to

Take a tick break without feeling that that impacts their

judgment of your capacity. You know? Oh my goodness. You've got to stop. That means

you're not gonna be safe. Hey. Hey. Hey. Check your assumptions with your

coat at the door, buddy. You'd allow someone to have a wee break.

If someone was sneezing loads, you'd say, hey. Pull over. Let it out. If

someone, you know, it just oh, god. We we cannot

think just because this is a tick. We make so many assumptions on capacity,

Skill IQ, all of these things just

from these movements and sounds. And it's just It's not the

case. People have to, yeah, pull over or pause for for

loads and loads of things in life. Why can't we allow that for

ticks? You know, why don't we transfer that that kind of

compassion and understanding and just absolute acceptance to tics?

Mhmm. Yeah. Yeah. There's just some really simple,

simple tips there, isn't there? That sort of why can't you

stop and pull over and have regular tick brakes? If it's so

if driving lessons say it's the first few driving lessons,

you're still finding them a bit anxiety creating, a bit

stressful, so maybe you're ticking more, then

factor that in, having that driving instructor who

can work with you, adapt the lesson to you,

have that conversation at the beginning. How would you like me to react to your

tics? Do you want me to ignore them? Do you want me to laugh at

them? You know? Do you want me to respond? What would you like me to

do? There is no judgment. And when you want a break or

if you're ticking a lot, let me know. We'll pull over, have a

tick break. Absolutely. That's the dream. And being

told that explicitly at the beginning Would be so reassuring for people

because it's it's really hard to advocate for yourself and to ask for these things

because people have lived a whole life, where if they do, someone might say,

Actually, now we've we've just we've had a chat in the office, and we're a

bit worried that, actually, maybe this isn't the right time for you to be learning

or maybe it's not particularly safe. And Have you spoken

to your doctor about it? Yes, yes, and yes. So lots of people hold

back their requests and their need for reasonable adjustments for fear Of

the assumptions that are gonna be made because you've done that, I I'm

literally a professional advocate, and I find it

hard to advocate for myself, and I find it hard to ask for these things

for myself. I would firely and passionately advocate for anyone

else and speak to their staff, their professionals, their teams, their

parents, their teachers, They're driving instructors, but we

internalize all of these past experiences of, you know, people

making judgments on what we can and can't do. And actually, that's the opposite

of what someone with Tourette's needs. If they feel safe to ask for what

they need and to put it in place without fear of judgment or consequence,

They'll do that, and they'll manage their condition much more effectively

and more safely. You know?

I just you know, I don't know if everyone knows this, but on

your driving test, you can talk to the test center manager

And actually say, look. I suffer from Tourette's. I might need

to pull over and just have a a little break And

then carry on. No. Not a lot of people actually

know that. So if everyone's aware of it from the beginning, People are

probably gonna be less stressed when they get to the test. Yep. So when

you book your test Yeah. That's when you request so

when you book your test, there's a place on where to to

put in. And so if it's not Tourette's, if it's if it's something else, then

to say, this is a likely adjustment that I might need. This is clear adjustment

that I might need. This is my condition. These are the sorts of things that

would be helpful for me. And it's I know it's not always

guaranteed. No. But the request can be

made, and where possible, they will try to accommodate that

request. So advocate for yourself when you book your test,

get the request in there. Yeah. Wow. That's fab. I I didn't

know that, and I imagine lots of people don't know that. And,

actually, I think by the time you get to the test, you've probably got a

great idea of how long you can drive before you might need a

tick break Yeah. At at what level you your tics can be

where you feel safe to drive versus where you don't. There's quite

unique tics that can be barriers to driving. If you have those

tics, you have to think more carefully about how you drive, how long you drive

for, when you're safe to drive, and there's a 1,000 ticks that would

have absolutely no impact

on your driving safety. If, you know, if people can Belt

out Mariah Carey songs, right, for their whole 8 hour journey

home, then why can't someone have persistent vocal tics?

Why can't I stick my tongue out repeatedly? Why can't I

raise my eyebrows? Okay. If my tick is rolling my

eyes, And I know that that's that's that's gonna be a direct

safety barrier to driving. So that day, when that tick's occurring, I'm

not gonna drive or I'm not gonna drive for longer than my will

naturally suppress, but there's just a 1,001 other ticks that

would have no impact. Normally, by the time you get to your test, you know

how long you can drive before Might start to impact. But like you

said, test day, it's not a normal day, is it? It's not with your

your Andy. It's not with your familiar safe Driving instructor that

you've been with for a long time. It might be a totally new face, and

your tics might be more severe day. And so just

knowing, I might not need it, but I have that

option there. That in itself is probably gonna reduce ticks because it's that

protection, isn't it? It's the answer to that worry question, what's

gonna happen if? Yeah. Yeah,

absolutely. Yeah. Sorry.

I've asked loads of questions. You go first. It's almost

like the Kev show again. You carry on. I said I'm

in politics. Yes. So I know

when we spoke before, so, you know, talking on about driving

tests and talking about anxiety. One of the

things that you mentioned when we talked previously was that one of the

causes of anxiety is that judgment from let you say,

you're not next to your normal driving instructor who you've had those conversations

with, who you've built that relationship with. And so

that judgment from an examiner, not just about your

driving, but about you and your tics

can increase that anxiety, can't it?

Absolutely. Yeah. I think, you know so Tourette's isn't, isn't

a learning disability. It doesn't impact IQ. If anything, lots of

people with Tourette's kind of have these these really spiky profiles, so they're

really, really incredible strengths, well above the average population, and then a

few things that are particularly difficult because of their brain type and and the

way that they work and live. But some of the sounds and

movements that can come from the body when someone is is having tics

can be really, really, really quickly and easily associated

with, Oh, lack of capacity, a lack of understanding,

some additional learning needs, very poor control, or very

impulsive, or very loud, or hyperactive. But, actually, It's simply a

feature of the condition, and it's it's not it doesn't impact those

things. But I think consciously or unconsciously, people are making

assumptions and judgments on On all sorts of things when they

hear or see these these movements. So that's something we really like to say. You

know, it's don't assume. It makes an ass out of you and me. This

is this is simply a body reaction. It's

a it's a muscle movement. It's a sound.

Don't try to look too far beyond it, really. Yeah.

Fabulous. I I mean, I've just written some little I've

written loads of notes Again, I've written loads of notes again. So I suppose

from my driving instructor background and if driving instructors are

listening to this, My advice to them would be

no assumptions and just no judgments. You know?

Everyone's an individual. We teach the individual.

You know? And I suppose that is the the golden rule, isn't it?

You know? We We just teach the individual.

Absolutely. Absolutely. And I think, you know, I was looking up a little bit

of kind of research into driving and Tourette's, etcetera, and I I think seem

to say that, actually, the presence of Tourette's doesn't seem to have that

much of an impact on kind of driving outcomes and safety. The presence of

ADHD and catastrophic ADHD, that is actually kind

of statistically what what shows maybe a slight risk increase for

driving. But actually with Tourette's, No. What what lots of studies have shown

us is that most people with tics and Tourette's, around 80% who engaged in this

research, have a driving license and drive safely and a small

percentage with with more intense tics or quite

specific tics, for example, throwing the head back or

eye rolling that impair the safety of driving. Those

individuals chose not to get a driving license. Though what's interesting

is that all of the people in this piece of research that said, you

know, I don't have a driving license because of my tics, all of them

Or, you know, 98% of them wanted support to access

1, but didn't feel like that support was in place and that that support

was available. And, actually, for those individuals, I think

there there is a safe way to drive, and it's about kind of really low

and slow. And if you need to do half an hour Lessons,

over an hour lessons or 2 hour lessons, marvelous. If you need to

build up your your exposure to Driving. If you need to spend some

time in someone else's car first, if you need to you know, the I think

that there are lots of safe and creative ways that we can support people to

learn to driving Whilst recognizing that it's a choice, and loads of people

with or without Tourette's don't want to drive or don't need to drive.

But what I found really lovely and reassuring from the research is that most

individuals with Tourette's drive drive safely, comfortably, and happily, But

make informed day to day decisions on factors that

might impact their tics. I won't ever drive to a festival. It wouldn't be safe.

I'm too excited, and, you know, regardless of of the Tourette's, it's

kind of my personality, but I know that that's something. And I will I

put that in place. It's my legal, ethical, Personal

responsibility to do that. You know, you you don't need to disclose

that you have Tourette's syndrome in order to get a driving license unless you think

it's gonna Impact your driving. And if you're not sure, talk to your

doctor. Have that conversation. Look at the research that

Explores what types of tics might impact driving. And is this something I'm

experiencing? In which case, is this the right time? We know that tics come and

go. They change throughout the course of a person's life. So I I've

had eye rolling tics for various points within my life and various points

within the 10 years that I've been driving. It didn't mean that I had to

give up license, it meant I didn't drive at that time. And

similarly, in in kind of childhood, I had big arm tics, and those

would have impaired my driving, but I wasn't learning to drive at that time.

So we're recognizing ticks come and go. They wax and

wane. They rarely stay the same tick throughout the course of your life.

And so if it's not the right time right now, it doesn't mean it's never

gonna be the right time. And to answer my questions? Yeah.

It's just brilliant. It's just so much

really common sense obvious.

It doesn't feel like there's anything that we shouldn't

already know, and yet somehow we didn't already

know. It's Well, it's our assumptions, isn't it? Yeah. That's the if I

was to sum this up, you know, right back to the beginning, what did I

think Tourette's was? And it's but it

may be that, But there's a lot more as well, isn't there?

And it's just like, okay. I get it now. Absolutely.

And I think, actually, it's a nice point to come back to, Kev. We

we said that there there's only 15 to 20% of people who have these,

kinda, these swearing tics. But if you are working with

someone with these tics, the most important thing you can do is to

not bring attention to them and to ignore them even if and I

really compassionately recognize that this isn't always easy

even if the nature of those ticks target a feature, you know, characteristic

about yourself, which they often do, And often the anxiety of

insulting, offending, or upsetting someone increases the likelihood of that

tick happening. So It's not easy. I work with lots of people with

Tourette's. I have a receipt I've been on the receiving end of some really

creative, beautiful, bizarre, targeted tics that you're like,

oh, that hit right in my self conscious gland. However,

it's not what they meant. And if I make them feel anxious, shamed,

or embarrassed for this, I'm gonna make it worse for them. They live with this

condition all the time. I am I'm alongside

this For 1 hour a week. And, actually,

my comfort isn't always more important than someone

else's. Actually, how can we just say, well, no. I get it.

Oof. I get it. It's okay. And that's something that's so protective.

And in time, that would that would reduce the likelihood of those ticks

Occurring when someone isn't going, don't call them fat, don't call them bull, don't call

them this, don't call them that. You know, it's it's the it's the don't that

make us actually more likely to do. So if people aren't worrying, they are

less likely to to have some of those tics. Not always easy,

but give it a go. Yeah.

Fantastic. Well, I I think that is a brilliant

piece of advice to to finish up on, actually,

I I only thank you so much

for sparing the time for us today to come on and talk

so passionately, and give us so much

information, which I I really hope that everyone

else enjoys and learn something from because we know learned a lot

from you. Yeah. It's and it's, yeah, it's

been brilliant, so thank you. Oh, you are so, so welcome. It's

been really wonderful to come and have this conversation, and I know

that this is a a worry and an anxiety for lots of young people

growing up with Tourette's. Would I ever drive? I ever get a job? Would I

ever get married? And I hope that some of the the support and advice can

help people to know you absolutely can drive safely, and you might just need

to Explore with support what helps your tics, what's in

what increases your tics, and find the right driving

instructor who really gets you. You know? And I think good Good luck with it.

And, obviously, if if you are learning to drive and you want some support or

some advice, do get in contact with Tourette's Action, and we can,

we can offer some kind of support strategies to make that journey a little bit

easier if needed. So thank you so much for having me, guys.

Thank you. And we will make sure that all of your links are in the

show notes so that they're they're available for anybody listening

to we have to find you nice and easily. Fabulous.

Well, thank you guys. Thank you.