Episode 23: The mystery of Tourette’s syndrome

Just a warning. This episode does contain quite a lot of course language, but the vast majority is not swearing. It's vocal tics that come with Tourette syndrome.

You need to fuck you find the match. As you find the match, you can get us sucked. You get like four suck in a road, like going down for that way.

You're listening to a little girl called Fife. She was eight at the time. This is part of her home video, filmed two years ago, You.

Can't go this way, all this way, that way.

Fife is one of the most creative and charismatic ten year olds I've ever met. She's passionate, she's joyful, and she has a diagnosis of ADHD and Tourette syndrome. On my finger's going there, yep, I see, Oh my goodness.

One was my second one.

That one was my third one.

Five likes to make things, lots of things, including finger puppets, and just let me try one on for size. These are not run of the mill finger puppets. They're the work of a kid with serious talent. Not only are they functional, they're beautiful. Did you have to look something up to know how?

I just guessed on how to make them.

You're so clever.

I was the hardest to make.

Where did you get the inspiration for that? Just in your head. I'm diving into the complex and fascinating world of neurodiversity. I'm not an expert, but my daughter is neurodivergent and a few years ago I was diagnosed with ADHD. In this series, you'll hear from expert and from many wonderful people who experience the world in a unique way. We're looking at neurodiversity from the inside. Gelder, I'm Sonya Gray, and this is no such thing as normal.

Series two.

Tourette syndrome. We all know what it is, or we think we do, but Turets is routinely misrepresented and largely misunderstood. Most people associated with compulsive swearing or obscene language, but only about ten percent of those with Turets have this particular trait. This is a complex neurological condition that often comes with social rejection and discrimination. In this episode, we hear what it's like to have a tic disorder like Tourettes and why so little is known about a condition

I've got like somewhere I like, I've go like I like that, and then some people think I'm like going like oh, And then when we're like listening to like something, can I go like people think I'm like saying like whoaw or something?

But can you feel them coming on?

Yah?

It sounds like everybody at school was pretty good about them? Are they They understand because everyone's different.

It's just some of the sexes.

Did they make fun of you or teasing?

Don't make fun of me. They just don't really understand. And like some em think I'm just making annoying noises, yeah, and just being annoying and destructive, say like like that thing, I would go like, I'd get my head and if I was like angry and upset, I would literally just go like bang and push my head on it really well.

And you couldn't stop doing that. You couldn't stop yourself doing that. Yeah, wow, do you remember it?

Yeah? I remember doing it. I remember doing it in my mom's bathroom on the sink. I remember, just like going out when I get like I'd do it when I was like really upset and angry and sad.

Yeah, oh, poor thing.

I don't do it anymore, thank god.

Yeah, what is the worst teck? The one that if you could take it away, you would h.

That if word?

Why?

Because when I'm in class or I in score, people think I'm like just saying it on.

Purpose because you're not choose. You're not actually swearing, are you.

It's just a tick?

Is there certain times in the school day where you do it more like.

Yeah, like at lunch or morning tea with my friends, because they don't really they don't care. They're fine with it, and they support me in there. They don't care.

You're not ticking at the moment.

Holding them men.

Oh, don't hold them in, darling. I don't want you to feel like you have to suppress them with me.

Yeah.

Yeah, when you're at home, you don't feel like you have to suppress your tick saying yeah, it can just be yourself. Fife is lucky to have a super supportive school and family. We'll hear from her mam Amanda later in the episode, she describes the last few years in the road they've been on with Fife Maltourettes are still

No fow fuck and terrible, fucking terrible man.

You're right today.

Yeah, I've been good. I've just been busy. Yeah, fucking busy man. You always busy most days? Yeah, most days I'm running around like a headless chicken.

It's likely if you're on TikTok you'll know Leyton Clark as Uncle Ticks. You might even be one of his four point six million TikTok followers. Layton is very funny on TikTok, but he's also brutally honest about the profound physical and mental challenges that turets brings and how hard it was for him growing up with a multitude of socially unacceptable tics. TikTok is his full time gig now, but he also shared his story on a wonderful local

I appreciate that. I try.

Well, it seems genuine, is it.

I mean, try and be genuine every day and humble from where you're from.

Yeah, and people I imagine when you were growing up, you know, because Turett's is what it is, and you say things that aren't you. They wouldn't have maybe seen people that didn't really know you, would have just seen.

Everyone else seems to have opinions. It's all good. I don't really care have your opinions.

It's funny, yeah, but it's hard for a little lady.

Oh yeah it was. Yeah, I did. It broke my heart depressed when I was younger.

How was your childhood terrible?

I had a really good upbringing from parents, but I had a shift time at school and all that I was always bullied in gave me a real hard skin. That's what I find comedy and dark humor and shit really funny now. But growing up with Tretts was hard. I little affect me when I was really young, but then when I got older, I just didn't really give a shit.

So did you get do you reckon? You got to that point where you're just like you know what, this is it, this is me. Nothing anyone can say anymore can hurt me.

Yeah, pretty much. I've had it all. Anything that nothing really offends me. You know, people come up to and see she all the time.

But because look, I know very little, it turns out about Tourette syndrome, tik disorders. It's been a deep dive for me and I'm just like, WHOA, how did I not? How was I so ignorant to the.

Experience, ignorance, blicit, You're just none the wiser, not.

Really understanding the extent of turets. It's not just about the vocal texts and stuff. It's the Yeah, it's the pain throwing.

My head around that's going to that's going to be sort of into the.

There's an element of mystery that surrounds turets. And if you dig into the academic papers, as I did, you'll find there are contradictions even in the research. So I seek out an expert and start with the basics.

What is it.

Tourette syndrome as a diagnostic category is the present over time of a combination of symptoms.

That's Hillary Mack. He's a clinical psychologist with a special interest in tick disorders and Tourette syndrome.

So if you have multiple motor techs, say eye twitching and throat clearing, and at least one vocal tech which might be that there's a hum or aus squeak sound, and that those symptoms have all continued for at least twelve months, then we say that you've got tourettes.

One of the things that I found trying to research it is there's not a this is what it is, yes, and this is why. Yes.

So even if you look into the scientific literature that we're still in the process of trying to figure out exactly what's going on in the brain for people who have techs and turets. We know some of the main regions involved, we know tics are inherited, yet we're still in the process of trying to really get to the bottom of exactly why. In terms of the I guess the phenomenology of it, like a tick is a tick, whether we're talking about a functional tick disorder or trick syndrome.

Right, because a lot of kids and adults do have tics, At what point is it crossover to a disorder?

Very good question. So ticks are common about one in eight children will have a tick at some point in their lives, and so for the most part, we should be viewing ticks as just a common and ordinary part of child development. We start to view ticks as problematic at that point of kind of frequency. They're happening enough and there's enough tics that they're beginning to have an

Layton Clark is thirty years old now. He's spent most of his life trying to suppress his tics. School and workplaces are not super welcoming of an appropriate language, even if it's involuntary. Before he blew up on TikTok, Layton was a wedding videographer, which I find intriguing because a loud tickstorm through the wedding vows would be less than ideal, and I wonder how he managed it.

What do I used to do? Good question? Back in the day. I used to suppress them, harden and go at the back tick for like fuck nof now yeah shit, But it was the only way to pay my bills.

I'm just trying to get an idea of what it feels like for you when you're suppressing your tics. Is that painful?

Painful and a mental sense, yes, and sometimes in a physical but more mentally opposed.

Yeah, question, Yeah, having to read as a care Did you get any help support?

No, there was nothing. There's nothing in the nineties, early two thousands, there's no support from any government funding. There's still no support now. It's not seen as a disability here, No, but I reckon it should be because some days, oh like tech and I can't walk or struggle us going to get a bread is fucking hard. So maybe even just for example, having a disability, parking would be handy for people like me.

So you can't have access to that.

No, No, I never have been able to have access. But I'm just thinking about other people more than myself.

Yeah, and you get out and you do, but there are a lot of people I'm kissing that withdrawal from the world because every time you go out, it's like you just don't know what you're going to face, and.

Or not so much not what you're going to face. You just don't know what text's going to kick in and you don't know how you're going to be, or if you can just go up to that door and go and grab your avocados for your toast, you know what I mean.

Latian Clark no longer suppresses his ticks. It's quite something to sit with a person who's not exactly sure what his body's going to do or what's going to come out of his mouth. I imagined and involuntary vocal tick would be distinct from someone's regular speech, but it's not that clear cut.

Most disabled people recognize me, so we get along pretty well. Like a house on fire, or like a fat bitch and a bakery. That's a bad one, but you know what's going a tick when you see that fat batches and bakeries.

So there was a tick before, but then you just repeated it again and it wasn't.

Is that right? Yeah that wasn't. I just repeated what I said.

Yeah, yeah, yeah, yeah, yeah.

It's one of my number one tick traits. Oh fuck yeah, not that I can help. That just happens.

Yeah, it's fascinating. You might be thinking, hmm, I don't think that was a tick, But think about shrugging or throat clearing. Those are motor ticks that can look just like conscious movement.

I have a terrible tick, old barket, fat woman. It just happens, but I can't help him. It just comes down and only woman too, not men. Tell you, woman, I don't know why.

So it's almost like it's like you've got all a twin, a twin that's just.

Like sitting on my shoulder saying buck No, I don't want to woman.

Yeah yeah, And I'm not saying that that's you, But it's like we've all got that in there somewhere that we want to say it.

But we just I just have to laugh. You just got to laugh.

It's a tough one because any woman who hears a man barking at her is going to be upset and angry. Possibly it's going to ruin her day. Would it make any difference of he knew that he had to read and it was unintentional, I think so, I don't know. For latent, it must be extremely hard. He has to take responsibility for causing offense, but it's not really him. Do you find a lot of your life has been saying sorry.

Ah, shitchy? I say it all the time to people.

So you're but basically you're apologizing for something that you have no control over.

Yeah, because it just makes people feel better about themselves at the end of the day. And I am sorry because I'm oh, fuck, I just called you a fat bitch. I'm sorry.

But sometimes are you like I don't want to have to keep saying sorry. I don't want to have to keep apologizing.

Yeah, yeah, I guse It just is what it is with the disability, and I don't mind saying it.

There is a lot of sorry, sorry, thank you, thank you. But what we don't see is the work that goes in beforehand to reduce the impact on others. For example, Layton is never sure what his body is going to do. He has to be constantly aware of his proximity to other people, basically so he doesn't hurt anyone. When he's taking a plane flight, Leyton makes sure in advance that there's a vacant seat in front of him, because no one appreciates a foot in the back or a knock

I told her it was a neurological dysfunction in my brain. Three or four times I explained to what Tourettes was blah blah blah as much as I could. I told her it was like, I have a disability and I can't help making those sounds of noises or swear words. And then after that, after I explain it what it was, she goes, yeah, but can you just stop swearing? It's wrong?

Just stop swearing. If only it was that easy, which leads me back to psychologist Hillary mac with the million dollar question what's actually going on with this swearing tick?

So it's one of the ones that stands out to people. It's also relatively rare, so only about one in ten people.

So why though, why is it swear words? Why is it the words that you really shouldn't say that are the ones that come out.

I feel a little unsure about answering that, because actually we don't really quite fully know.

Kudos to Hillary for being a professional. He didn't want to comment on anything that wasn't in the literature, and he's right. There are many hypotheses, but not a lot of agreement by researchers as to why some people have the swearing tick known as coprolalia, which can extend to obscenities and racial slurs. It is important to know that there's no thought or emotion behind these outbursts. Basically, it's the brain traying itself. So what about tick disorders in general?

Yeah?

Very much so well put so, you can definitely experience more of your texts when stressed and anxious, but those aren't the causes in themselves, and that a TECH isn't a sign that someone is stressed or anxious. In fact, some people might experience their texts more frequently when they're quite relaxed.

So what we do know for sure is that Tourette syndrome rarely travels alone. There's a strong connection with ADHD and OCD. Let Clark has both these diagnoses, and I ask him if the ADHD has much of an impact on his life.

Hugely. I guess it's one of those you know, make up in the morning. You try and do ten things, but you when you get three of them done. That's how I kind of see it.

What about OCD, have you got any Yep?

Yeah, I used to be. Yeah. Sometimes it's real bad fucking I'll struggle because of it. I'll be hard out into my OCD for a week and then it will disappear come back in a month. I'd refuse to sleep in my bed because I don't want to make it dirty. Pretty interesting though.

Right, it is interesting, But it's a lot for one person to deal with ADHD and OCD on top of the turettes compulsive and impulsive. I ask psychologists Tillery if these are common color curring conditions.

Well, definitely extremely common, in that people with significant texts at some point in their lives as a ninety percent chance they'll have some struggles with ADHD and or OCD. And we think that's because the the parts of the brain that are involved in all those conditions are very very similar, what we call shared etiologies, so the underlying factors and pathways. So it does mean that people with TECKS are way more likely to also be struggling with

So shared etiology.

I have ADHD, I don't have tics, but what is the sort of similarity in the brain? Am I trying to make sense of something that's not easily made sense of.

We're very kind of complex organisms, us human beings. Our brain is having to do a lot to constantly regulate every aspect of our functioning. There's this important pathway, you could call it the pathway of motor control in the brain. It's likely involved in the various things that we're talking about, including texts or compulsions or some of the impulse control stuff that goes on for people with ADHD.

There's a real sense that I get, having just started looking into this, that there's a lot we don't know. Would I be right?

That is absolutely the case, and even more so with texts and turetts, that we are still very much in the process of trying to figure out exactly what's going on in our wonderful and immensely complicated human brains.

You heard from ten year old five at the top of this episode. She's a really wonderful kid who just happens to have ADHD and Tourette syndrome. Her mum Amanda tells me how it all played out.

It wasn't actually until she was about seven.

She started making.

Like little sounds, like little beeps and squeaks, and doing little shrugs and stretching her mouth. Honestly, we just thought Fife was just being.

Expressive.

We just thought she's just so creative. And then her teacher said to me, hey, I think she's ticking. And then we started really paying attention, and then we were like, oh, wow, this is like a repetitive thing. They're morphing all the time, they're coming, they're going. So we took it to the doctor, and you know, surprise, surprise, the gp knew absolutely nothing about ticks or Tourette's or your audiversity to just brush

But I just asked, did she seem happy at the time? So happy. Yeah, she's always been. She's always been. Really she has a really high.

Self esteem, you know what. She thinks of herself as the most important thing, especially with something as confronting as Churette's.

But then she.

Developed what we call the fuck tick. All of a sudden, she just started saying fuck over and over and over. And she'd never been a kid that swore, so it felt really cruel. It was also quite loud and it would come out with like a force that almost made her sound like she was angry. That was when we started to really panic because we were like, okay, this is actually hard, like, you know, taking her out in public. People don't understand. People are staring at her. That's making

That video is the one you heard at the beginning of the episode.

Keep Finding Them Lunch.

And he sent the video actually to our now psychiatrist. And our psychiatrist who had told us he couldn't see us for eighteen months, watched the video called us the next day and he said, I'll see you in a week.

Pay for it.

There is just so many families, but if you think even half of those people probably can't afford to get the proper help, it's heartbreaking.

It really is heartbreaking. And despite having access to great support. Amanda's daughter Fife, has been through a lot in the last few years. But this is a very special kit, very in tune with other people's feelings. She loves people and she loves her friends.

So yeah, and then she's just like calmly reading the book, and I'm just like, not my first ever a friend, but like someone who's really special to me.

You have a lot of empathy. Do you know what empathy means?

They probably did, but I forgot. Oh, I just don't know what it means.

Well, what it means is that you really care about people, and if someone's upset then you're one of the first people to see if they're okay.

Yeah.

Yeah, you feel other people's sadness. Yeah, you don't like people being sad.

And they don't make seeing people get hurt as well. It makes me feel better that I think about that all day and I start crying because I.

Feel really bad. Oh. It's a lovely quality to care about people. It's the most important thing. Lighton Clark cares about people too. On his uncle Tick's TikTok account, there are numerous posts if him stopping and chatting to strangers and really listening to them.

No, Ma, how am I please get in here right now, specially on the street. I love talking to people. I love talking to people.

I love how you are with people, like in your videos and like the airport, you're having a shit time by just the way you were that it was stressful, like from the minute you walked in, and yet people were like hey, uncle texts and you're like, get cold a nice to me. You know, you were really with them. It's very powerful what you're doing.

Yeah, fuck fuck. I never used to see it like that though.

What would you like people to know about turettes? This is a I know it's a really broad question, but I think you know there there's a little bit of voyeurism sometimes with Tourett's and a little bit of like, oh, come, I do something to make me laugh, you know, not not actually the internal experience and what I want to take you.

He has quite a lot.

He wants to tell me things you don't think about, like eating and drinking can be hard. He can't really go to the movies. He's always disturbing people, and now being a celebrity means he's very conspicuous.

I'm going to a concert tomorrow night. Quite a nervous about it. Could I don't know how it's going to go.

Can you disguise yourself?

Not really, because I'm a loud true? How the fun is supposed to fucking high bed?

Yeah, that's true, that's true. Are you I don't think about that. I was just thinking about it. You can put them a star shup.

Fuck. I could wear that to Moorroment. Might work. Covers your face, that's funny.

There's no way and no where to hide, and there's another layer to have this. Wearing tick coprolalia as a young parkerha girl is hard enough, but for Layton the ticks feed into a certain stereotype. Being Maldy and male and having to Rette must have been hard.

Yeah, yeah, yeah it is. Yeah, it's a reality. Yep, that I face. I know you might go, oh, most people are really be accepting these days, but they're only accepting now because I know who I am.

Layton's faced a lot of rejection in his life, but having a strong cultural identity gives them a sense of belonging. What is being Maori mean to you? How important is there?

What does it mean to me? Means the fucking world. I'm proud to be Maldy. It's our identity, as like people used to be proud when I was younger because I was always frowned upon to be Moldy. But now I'm much super I'm real, real rap around from King Country hard. You know. I grew up in a hearty, moldy household that helped me when I was younger.

As a kid, Laden was accepted by as famo and on his mud eye. It's a shame that acceptance wasn't universal because any problem with Tourette's doesn't lie with the individual. It's an onlookers thing. It's the rest of us. Who are disturbed or confused by behavior we just don't see as normal. The hope for five's mum, Amanda, is a society that welcomes her daughter's differences. A tick neutral world.

There's this expectation on how we're all supposed to behave. That's where we need more awareness. We need people to understand that where all individuals were all unique. So if we can just all be a little bit more understanding about that, then yeah, she can up and jump and beep and do the peace sign and occasionally swear and it's totally fine.

This is the last episode in this series of No Such Thing as Normal. Thank you so much for listening and for your support. If you like the series, please rate and review it and share it with anyone who you think might benefit from this copepper. No Such Thing as Normal is produced and presented by me Sonia Gray. The editor is Jamie Lee Smith. Owen O'Connor and Mitchell Hawks are executive producers. Production assistant is Beck's War. You can find us on Instagram No Such Thing as Normal Podcast.