Tourette’s Mythbusting, featuring Dr Jane Gilmour

Transcript 

PROFESSOR PHILIP SCHOFIELD (INTRO)

Hello, and welcome to series two of The Greatest Good, a UCL Press podcast. 

Jeremy Bentham, the late 18^th and early 19^th century philosopher, was the intellectual inspiration for the founding of University College London and is credited with the maxim that actions should be judged by the amount of happiness that each produces.

I’m your host, Professor Philip Schofield, Director of the Bentham Project here at UCL. Join me as I explore the ways in which Bentham’s thought is still relevant in the 21^st century.

In this series, we focus on the intersection of Bentham’s ideas with current research into how we understand the human mind, in conversation with leading UCL academics.

DR JANE GILMOUR

So, I’m Jane Gilmour and I am a clinical lecturer, co-director of a master’s programme, Infancy and Early Childhood Development at the Great Ormond Street Institute of Child Health and I’m a consultant clinical psychologist at Great Ormond Street Hospital. I’ve got a special interest in a variety of neurodevelopmental disorders, and I think our focus here is on Tourette’s Syndrome, but as we get into our discussion I hope we’ll start to agree that when you step into neurodevelopmental disorders it means, you know, you have to think about lots of them because they are so often co-occurring, so if we’re thinking about Tourette’s Syndrome, we’re thinking about ADHD, we’re thinking about obsessive compulsive disorder and so on. 

PROFESSOR PHILIP SCHOFIELD 

ADHD – Attention Deficit Hyperactivity Disorder?

DR JANE GILMOUR

Exactly right, yes. Thank you for picking me up on that because it’s really important that we get our definitions clear and so everyone can join the process. 

PROFESSOR PHILIP SCHOFIELD 

It’s interesting that it’s called a disorder. 

DR JANE GILMOUR

It really is, now it’s very interesting because I had that conversation with some of the team before we started. This is true also for autism by the way, so ‘autism spectrum disorder’. 

As soon as you have the name disorder in the title, if you like, of the condition you’re discussing there’s an implication there’s something wrong, something amiss, something missing. And there’s a very strong conversation in the neurodevelopmental community to embrace the difference that is a neurodevelopmental condition. So for example, somebody who is autistic will describe themselves as autistic but will potentially say, you know, ‘I don’t want to discuss having a disorder because I’ve just got a different approach to the world’.  

You could argue the same is true for Tourette’s syndrome. Again, the idea of a syndrome implies a deficit rather than a difference. But the neurodiversity approaches are increasingly calling for an understanding of difference rather than deficit, partly because there’s increasing evidence that there’s value in having a different approach to the world. You know, if you think about the advantages of being somebody who is interested in novelty, so if you think about ADHD or autism, they’re very different approaches to the world. If I have ADHD, I’m interested in novelty. I will look at different things and I will be drawn towards doing something different. And I might find something else about the world that the rest of my society doesn’t know. If I’m autistic, I’m very good at thinking about a system, I’m being persistently interested in something and drilling down and having a specialized knowledge in that area. Again, that’s got huge opportunities for society. So I think the neurodiverse call for difference rather than deficit is very well founded.  There’s lots of wonderful things about a different approach to the world. 

PROFESSOR PHILIP SCHOFIELD 

I mean, what immediately strikes me there is Jeremy Bentham’s successor in the utilitarian tradition, John Stuart Mill, who says that, again, we have to embrace different ways of living and the more diverse ways of living there are, the richer we are as a community because we can learn from these different experiments in living, as he called them. 

DR JANE GILMOUR

Absolutely. I mean, I will say that neurodiversity should be considered like biodiversity, right? We need a rich environment in the world for the world to survive.  And in the same way, neurodiversity, that difference, that variety in our approaches to the world ensures that we have a rich society. So I applaud that, absolutely. 

PROFESSOR PHILIP SCHOFIELD 

And can I take you back to Tourette’s? What is it? Because sort of the common understanding is someone who just can’t stop swearing. 

DR JANE GILMOUR

Well, I’m very glad that you said that’s a common understanding, because that’s one of the myths that we would like to bust. 

So let me start at the beginning and describe what Tourette’s is. So it’s a neurological condition in which there are so-called tics. So tics that will describe movements or sounds that are sudden and involuntary. So a vocal tic might be a small sniff or it could be a whole word or phrase. And one of those tics may be a taboo word or swearing. A motor tic could involve a blink, or it could be something more complex, like a twirl or a curtsy or something that looks quite complicated and might be quite elongated. 

The only thing in Tourette’s that is constant is change.  And this is one of the reasons we’ve got a bit of a challenge in terms of educating the world about Tourette’s. So, for example, the classic time for a tic to emerge is around young childhoods of three to five. And then those tics, so-called wax and wane, like the moon, OK, full moon and crescent moon, they’ll get more bothersome and then they calm down, whether we treat or not. They will peak in terms of the degree to which there’s severity around about 10, 11, 12, just when a young person is going to secondary school in the UK, certainly, not in other places in the world. And interestingly, throughout the teenage years and into young adulthood, although there’s a wax and a wane, the tics will settle down. 

Now, there’s that. And then the quality of the tics changes. So if you’re a teacher or a community leader or something that has a young person or an adult with with tics in their environment, you may get used to one set of tics and in fact, the tics will change and they are suggestible. Now, being suggestible is a symptom of being a human being. So if I yawned now, you might feel the urge to yawn. If you and I knew each other very well, that urge would be greater. So the more social connection we have with somebody, the greater that suggestibility. 

So in other words, all of these variables in terms of what Tourette’s picture looks like means that it can be that one person’s experience of a young person who has tics is very different from another. And there may then be misunderstandings about that’s willful behaviour, when in fact we know it’s something that cannot be controlled in most instances.  

There is also a bit of a challenge in terms of the capturing the data psychometrically. So because of those changes in patterns, it’s quite difficult to be able to measure what is going on in a longitudinal way. In other words, we should use longitudinal data and we know what life is like in academia. We don’t often get the opportunity to look at it longitudinally. We know probably that around about 1% of the population will have Tourette’s syndrome, which is very common really. So any typical school, there should be one or two kids around there. And the lifetime prevalence of having a tic is about 20%. So in middle childhood, there is a likelihood of around one in five kids who will show a tic and that tic will resolve and disappear. 

But as a community, we’re getting used to lots of neurodevelopmental conditions. And lots of people will say, ‘oh, I think that maybe that young person is autistic or maybe they’ve got X or Y’. But it’s very unusual for the general population to know about tics and they really have to know about tics.  And that’s really why I’m delighted to be here in this podcast, spreading the information about what tics are. 

Gilles de la Tourette was the first person to describe the first case of Tourette’s or indeed the first series. And one of the first cases of Tourette’s was, I think she was a Countess, I think that’s correct, who had the classic picture of vocal and motor tics. So at least one vocal tic and a series of motor tics. And one of her vocal tics was taboo phrases. So as you can imagine a Countess, I think in Victorian Paris, if you like, that would stand out significantly. What we do know, and it was one of the taboos we’d like to bust today, is that within the Tourette’s community, only about 10 to 15% of people will have that tendency to have a swearing tic or ‘Coprolalia’ as they call it. But Gilles de la Tourette was the first person to describe a convincing series of individuals who would fulfill the criteria. 

And of course, there is a little bit of a fashion that is quite interesting to look at historical figures in the past and think, ‘well, I wonder, what did they have?’ and retrospectively identify conditions, which of course one should never do. But having said that, when I’m doing psychoeducation for young people, we talk about Mozart, he’s probably likely to have had tics as well as autism. And I gather Bentham may have had autism. There’s a theory that he may have done. 

PROFESSOR PHILIP SCHOFIELD 

Yes, yes, there is a – I mean, I don’t find it convincing. I mean he was certainly unusual, certainly some sort of genius.

DR JANE GILMOUR

I, the thing that, I mean, I agree with you. I’m not – you know, the only way to be clear about how somebody presents is by having a full assessment with a multidisciplinary team and so on.  So having these retrospective hypotheses is often unwise. 

But there was something about the idea of everybody having right, everybody should have an existing, you know, an equal right, which I gather is a Bentham idea. Is that right? You know, I wish I was joking when I said I had to google Idiot’s Guide into Utilitarianism. So I’m not, for a moment, pretending that I understand the position, but as I read it, the idea that everyone has equal right. 

PROFESSOR PHILIP SCHOFIELD 

When we talk about Bentham and rights, it’s quite complex because he rejected a prevalent theory of the time of natural rights. I mean, I think it’d be fair to say that in terms of everyone having equal rights in law, he said everyone’s interest should count the same. So that is a basic idea of equality. You know, no one should count for more than one is what he says.  So everyone’s interest should be taken into equal consideration. So in fact, coming back to our conversation, that would mean that because someone has something that’s regarded as neurodiverse or untypical doesn’t mean, say, they’re worth any less than anyone else. 

DR JANE GILMOUR

Well, I think, well, I do think it’s interesting that the idea about equal rights, it would sit well with my experience of many young people who are autistic because it’s an idea of fairness. So if you tell off a young person as a teacher who’s autistic and they haven’t done whatever they’re being told off for, they will feel that that is not fair and may act in a way, they may talk back and so on, a neurotypical kid might not because there’s a sense that that’s not fair. So there is something interesting and I agree with you about that retrospective diagnosis game is not a wise one to play. But I think there’s something interesting that really was very progressive about the way he thought about things being reasonable and fair for all, which actually does sit well with an autistic framework as well as being obviously a progressive position. 

PROFESSOR PHILIP SCHOFIELD 

I wonder – the fact that he was a great questioner, you know, saying ‘okay, this is how society operates – well why? You know, to whose benefit? I don’t get it, you know, explain it to me; here’s a better idea.’ Could that be linked in to…?

DR JANE GILMOUR

Yes, taking that position of curiosity, absolutely, and that position of depth, of understanding, it’s not a diagnostic indicator, but it sits well if you have that hypothesis and the idea of autism. 

PROFESSOR PHILIP SCHOFIELD 

I mean, from the outside, Bentham was always criticised for being eccentric. One of the criticisms, in fact, John Stuart Mill sort of made of him was, oh, he’s got tunnel vision. 

DR JANE GILMOUR

Oh, that’s interesting. 

PROFESSOR PHILIP SCHOFIELD 

I mean, it’s not a criticism like I go along with. I mean, I think… 

DR JANE GILMOUR

Well, you see, I don’t see that as a criticism. I think that’s a wonderful attribute. You know, who’s being harmed by that position? Nobody – and in fact there’s great benefit from that position, so I think that’s wonderful.

PROFESSOR PHILIP SCHOFIELD 

If a person has a tic, two questions: is it harmful to the person themselves, and is it harmful to anyone else? 

DR JANE GILMOUR

Well, that’s a very… 

PROFESSOR PHILIP SCHOFIELD 

I mean, that was a Benthamite question, wasn’t it? 

DR JANE GILMOUR

I think that’s so interesting. I think there is no easy way to answer that question.  You won’t be surprised to hear me take that approach. But we know that young people, and certainly one of the the first pieces of data that I published more than 20 years ago, was looking at qualitative responses about the young for young people themselves. What do they feel about having the ticks? And actually both of those positions were covered in as much as they would say, well, I have to get used to this idea. Ticks are part of me, they’re not all of me. And that self-acceptance is wonderful. It’s a really good indication of well-being in the future. And also there was an often an acceptance in their peer group, but also there was a stigmatization in the wider community and even in their in their peer group, how they were considered in their wider class and so on. And that stigma and that sense of being looked at or considered differently or an increase in being bullied meant essentially there was a risk of harm. Having said that, you know, so a young person… 

PROFESSOR PHILIP SCHOFIELD 

So the harm to the individual comes from the attitude of other people, it’s not that they’re harmed in any way from that?

DR JANE GILMOUR

In many cases you can certainly argue that and if I don’t treat because of that natural history of Tourette’s, if I don’t treat the tics, there’s no particular harm in terms of the natural history. They are likely to resolve in the majority of cases – not all. 

Having said that, some young people don’t engage or feel worried about engaging in society you know educational and social experiences because of their tics so in other words societal view of, you know, what we consider odd, or an oddity, dictates the degree of harm conferred on that young person. 

There are some exceptions to that, I have to say, because they can be very distressing. So, they can be painful and they really can – you know, one of the things that we established you know 20-odd years ago was the more tics you have the greater the impact on your quality of life. 

So, there is a, you know, there is a balance there in terms of the degree of harm experienced. A good part is our societal view of difference but there is also, in and of itself, something that can be impactful which is why you know that debate that tension, between if we’re offering treatment: should we actually be treating society? Should we be fixing societal views and/or should we be allowing that young person to have the opportunity to have control over their body – which is essentially what the treatment is allowing? And particularly for teenagers, I think there’s an agency an experience of agency which is very powerful and I would argue has a ripple effect in terms of self-efficacy. 

But it is a really interesting question and the literature does move a little bit as academic literature does it sort of has a fashion sort of swing between, you know, what is the best outcome and there were some very strong voices saying you know we shouldn’t be fixing this we shouldn’t be offering treatment but I think, obviously I think the more considered position would be” we need to educate society fix the stigma and also allow young people the opportunity to have agency over their body if that’s what they wish.

PROFESSOR PHILIP SCHOFIELD 

Right, right. Now Bentham has an interesting argument, it’s not quite this context, it’s more in terms of sexual orientation, but it’s, you can imagine a world where, let’s say, people don’t like homosexuality and therefore repress it, and so the homophobes don’t suffer the anxiety they have about thinking about the other people. So that’s one world. You can think of another world where there’s, let’s say, sexual liberty, there’s no prejudice, and so the people who want to engage in same-sex sexual activity, where it’s consensual, go ahead, and the other people not harming them, so they don’t worry about it, so surely that’s a better world.  So you take away, in this instance, you take away the prejudice, it’s not harming, you know, the fact that someone else has got a tic, it’s not harming me or anyone else, so let’s not worry about it, apart from, you know, in terms of what, you know, what do they feel about it. 

DR JANE GILMOUR

And it sort of reflects, we did some work. So a team member, Tara Murphy, went to Uganda and did a study looking at the societal view of tics in Uganda. There’s very, very few data there. And it was interesting just sort of picking up on what you’re saying about the idea of how society considers an event really does influence the fallout, if you like, or what happens next.  Because what they found is that there was a very different attitude to the idea of tics in Uganda. 

So in some instances, it was considered not something that needed to be addressed. This is not a ‘psychiatric’ (in inverted commas) condition. It’s just as it just is. And so there was no help seeking there. Some people just have it. 

But there was also a group of professionals who reported that for some families, it was considered a superstitious kind of event. And those young people would not be part of society. So they’d be hidden in effect. But also, there would be no help seeking behavior in that group, too. So in some ways, the two extremes that you’re talking about were described in a different sort of international context, if you like. 

PROFESSOR PHILIP SCHOFIELD 

So I mean that that is interesting. So the prevalence of Tourette’s is everywhere – is it universal? 

DR JANE GILMOUR

It is. Well, there was caution about the universal prevalence because of a lack of data. There were some hypotheses that certain areas of the planet may not have the prevalence that was described in the West. But where we have been able to describe it, the prevalence seems pretty consistent. So I think as things stand, there’s a very strong argument to say that it’s universal and that any differences in prevalence probably reflect differences in help-seeking behavior and the capacity to offer information about it.  So that’s likely where we stand, but we’re always evolving in terms of our understanding. 

PROFESSOR PHILIP SCHOFIELD 

Yeah. Can I just come back to something you said earlier about the behavior being likely to be repeated? So if you get two people with some sort of tic together, they then start to copy. Is that… 

DR JANE GILMOUR

Yes, that that often happens. And in fact, so one of the one of the problems we have in the clinical and in fact, the academic, world is that there’s a bottleneck in terms of treatment. So we have an effective treatment. We know about 25% of individuals get access to that treatment about 70%-75% of families want to get access to it. So there’s a huge bottleneck in terms of treatment.  Although I have to be clear that when you have a successful treatment, there’s a decrease by about 30% in terms of tics. So it’s not – doesn’t eradicate the tics, but it decreases the tics. Now one of the ways we could address that is to offer groups. So one of the most recent papers that we’ve published is looking at the effect or the feasibility of a group of young people who have tics, offering them a treatment that’s developed off the shelf for one-to-one treatment and seeing can we offer this to a group of young people who have tics. 

There has been caution – and I’m hypothesizing here, this is not described in the literature, but I believe this to be the case – there’s been caution about offering groups of therapeutic groups to young people who have tics precisely because of that suggestibility. And when I’m doing a group for psychoeducation, I have a group of young people, and they may start to mimic one another’s tics. But what we do know is those tics that are mimicked in the moment melt away very quickly. So they don’t, they don’t stay in the portfolio. But there is that caution about putting young people together because will they ‘catch’ (in inverted commas) one another’s tics. And we know that that’s not a major concern because they melt away. 

But there are some fantastic opportunities to being in a group. You know, it may be the first time as a young person that you meet somebody else that’s got the same experience as you. Particularly for teenagers, finding a tribe or finding a group, just to be able to say, ‘Yeah, that’s true for me’, I get an opportunity for young people to say, what’s what tics winding you up the most right now, so they can say. And honestly, that can be the most important part of that connection.  But we know it’s effective. We know it’s feasible. We got the same effect size that we would predict another one to one treatment session. So it’s a really good, feasible project. But we have to get across the idea that it will be okay to be in the room with another person who’s got tics. 

PROFESSOR PHILIP SCHOFIELD 

I mean, again this seems very Benthamic in terms of cost-benefit, you know, what are the costs – which from what you say aren’t harmful and don’t last, whereas the benefits are great and may last a long time. 

DR JANE GILMOUR

And I would argue that the group experience augments the benefits. It’s not simply that you’re getting the same treatment. And one could argue, you can’t spend as much time on an individual person and personalize it, but the power of being in the room with somebody else with the same experience, particularly for young people. And we know the evidence is that teenagers are much more likely to learn from one another, peer-to-peer teaching, than an older therapist giving them information in a didactic way, if you like.  So we could argue for lots of reasons, both in terms of the psychosocial experience, but also the learning experience, the content, the skills that you’re learning in a group probably are more powerful in a group. So I think for the greatest effect, I think there’s a lot to argue, and we’re hoping that will be part of a longer and broader rollout in terms of treatment and experiences for young people. 

PROFESSOR PHILIP SCHOFIELD 

That’s interesting. You sort of mentioned neurological processes, so is that what we think a tic is? 

DR JANE GILMOUR

There are some established differences, brain differences. And one of the things that’s actually very important to get across, particularly to young kids, we’re often talking about kids who are seven or eight, describing a brain difference.  Now we know from lots of MRI studies, looking at lots of people who have tics, as compared to lots of people that don’t have tics, that there are significant and different and noticeable brain differences. So there’s a sensitivity in the sensory motor cortex that likely is linked to a dopamine sensitivity probably, that leads to these tics. 

Now one thing that’s really important to get across is that a brain difference has nothing to do with IQ, nothing to do with the capacity to do something wonderful in the world. And I always say to these young people in the psychoeducation groups, if I scanned my brain, you would find a difference as compared to the rest of the world. There ain’t no such thing as a typical brain. The reason we can find these brain patterns is that we’ve scanned so many young people and adults who’ve got tics and compared them to people that don’t and found this pattern, which is consistent. So it allows us to say, well look, this is a brain difference, but we also know that all of us have differences in our brain, some of them manifest in the real world and some of them don’t. So it’s quite important, so we’re holding a balance here about getting young people to be experts in their condition. This is a neurological condition, this is something that I can’t help, and my brain is as good as yours, right? So that’s the sort of position we would hope that they would…

PROFESSOR PHILIP SCHOFIELD 

So, it’s a way of just saying, it’s just the way it is. And the problem, I suppose, like coming back to what I was saying earlier, it’s when you start to put some sort of value on what is just a natural phenomenon, and adding sort of a condemnation of people who happen to have one brain pattern, and a praise of people who don’t have that. 

DR JANE GILMOUR

And actually, in terms of a psychoeducation point of view, the most important thing we can do as a society is to ignore the tics because the more focus we have on those tics, the more we ask questions about tics, the more we look at them and stare at them, the likelihood is that we’ll exacerbate the tics in the moment. So I will say, ignoring is boring for tics. Sometimes they give up and go away because they’re so bored.  

So the idea that these young people, they do want to get rid of their tics very often, but they also can understand that they are part of them and will sometimes say, I wouldn’t be the person I was if I didn’t have my tics. I wouldn’t have had the experiences I’ve had if I didn’t have my tics. I wouldn’t be as understanding of difference if I didn’t have my tics. So I think as somebody who doesn’t have a tic but has been alongside lots of young people who have tics, I think there is a balance to hold, but I know for sure that the societal position is empathy and acceptance. And that’s absolutely amazing. 

PROFESSOR PHILIP SCHOFIELD 

So if I have a student in my class who’s got a tic or know someone, is the best thing for me to just to ignore it?

DR JANE GILMOUR

Absolutely. 

PROFESSOR PHILIP SCHOFIELD 

But a stressful situation will make a tic worse?

DR JANE GILMOUR

It does indeed, absolutely. 

Our experiences, and I think this is something where we’re thinking about being accepted by society, by your university group, by your peer group. This is where we’ve got some work to do and to think about empathy, to experience what it’s like to have ticks or to have to withhold those tics.  

And there’s an exercise that might be worth doing, and this is something I do with lots of school classes and even families who are not familiar with the idea of tics. So I’m going to ask you not to blink for 30 seconds, okay? And pretty soon you’re going to have an experience of a sensation on your eyelids, but you’re not allowed to blink. And you know one little blink, you would feel so much better, okay? So that, there’s lots of physiological differences between blinking and a tic, but the experience there is quite a good one in order of developing empathy. 

And I think if there’s something that I would like to get across is the idea of educating the world about tics. This is what I say to the young people in the clinic as well: you know, it’s your job now, you’ve got good quality information, you have to get out and educate the world about ticks because the more empathy and acceptance we have about tics, the fallout from that, the side effect of all that is that there will be less oddity about having a tic, greater acceptance, and the tics will actually decrease because the world around that young person will be much more accepting. 

PROFESSOR PHILIP SCHOFIELD 

I mean it’s a win-win situation, everybody’s better off. 

DR JANE GILMOUR

For the greater good – the greatest good!