We are delighted to bring you the fourth podcast in our series that focuses on Tourettes Syndrome. Dr. Seonaid Anderson will be talking to leading players in the field, rising stars of research, clinicians, and experts by experience. In this podcast we speak to Dr. Tara Murphy, Consultant Paediatric Neuropsychologist and Clinical Psychologist at Great Ormond Street Hospital. Dr. Murphy currently co-leads the Tic Disorder Service and Paediatric Neuropsychology Service.
The focus of this podcast is on cultural differences in tics and tic disorders.
Tara begins by providing an overview of what tic disorders and Tourette’s syndrome are, before exploring the gender bias of Tourette’s syndrome and what other co-morbidities or co-occurring conditions can occur alongside it.
With a number of misunderstandings existing about this condition, Tara comments on the issue of swearing and Tourette’s syndrome, and discusses research into self-harm and suicidality in the Tourette’s syndrome community.
Tara then explores whether there are differences between cultures or countries in terms of the expression of Tourette’s syndrome and shares why she is interested in researching tics and Tourette’s syndrome in different cultures or countries.
Tara also comments on a recent paper entitled “Why Don’t Children in Uganda Have Tics? A mixed-methods study of beliefs, knowledge and attitudes of health professionals”. She then discusses why Tourette’s syndrome may be just as prevalent in sub-Saharan Africa or in certain communities but access to services and health care may make it appear under-represented.
Furthermore, Tara explores what we might be able to learn from countries or communities where tic impact seems low, what the importance is of the awareness and acceptance of tics in the community, as well as the impact of social factors.
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Dr Tara Murphy is a Consultant Paediatric Neuropsychologist and Clinical Psychologist. She has worked at Great Ormond Street Hospital since 2003 in neuropsychology and intervention services. In 2012, Dr Murphy co-established and continues to develop and co-lead the Psychological Medicine Team in the Psychological and Mental Health Service at GOSH. She also co-leads the Neuropsychology team. Dr Murphy has co-authored the European guidelines for assessment and psychological interventions for Tourette syndrome (2011 & 2021). She has special interest in teaching, delivering and supervising behavioural therapy for tic disorders. Dr Murphy has written several books for young people with tic disorders and their families and more than 50 peer reviewed academic articles.
Seonaid is a chartered research psychologist and freelance neurodiversity consultant with many years experience in neurodevelopmental disorders. She provides support to research professionals at every stage of the research process and to healthcare experts in their clinical work, for individuals, universities as well as the public sector. She provides specialist advice and guidance on the treatment and management of a range of neurodevelopmental conditions such as autism spectrum disorders (ASD), attention hyperactivity disorder (ADHD), Tourette Syndrome, dyslexia, and mental health. She is on Twitter @Seonaidanderso2 and can be found on LinkedIn.
[00:00:32] Dr. Seonaid Anderson: So, hello. I’m Dr. Seonaid Anderson. I’m a research psychologist and a neurodiversity consultant with an interest in tics and tic disorders, like Tourette’s syndrome. I’m really excited to be here today as this is part of our series of podcasts that ACAMH is hosting on Tourette’s syndrome. Over the course of this series, we’ve been looking at the evidence-based research about Tourette’s syndrome and other tic disorders, as well as education, treatments, and the influences of the pandemic and social media.
Today, I’m speaking with Dr. Tara Murphy, who is a consultant paediatric neuropsychologist and clinical psychologist. She has worked at Great Ormond Street Hospital since 2003. And Dr. Murphy currently co-leads the tic disorder service and paediatric neuropsychology service. Tara, thank you so much for speaking with me today. The title of our discussion today is cultural differences in tics and tic disorders. But we should probably start with a quick introduction to what tic disorders and Tourette’s syndrome are.
[00:01:36] Dr. Tara Murphy: Thank you, Seonaid. And thank you so much for asking me to have this conversation with you today. I really appreciate it. Such an interesting area, culture and tics. So, to start off with, tic disorders are one of those conditions that is quite well known but quite poorly understood. And it’s a whole spectrum of different presentations, from transient tics at one end, in which an individual, typically a child, will just have a brief period of tics, all the way to Tourette’s syndrome, which is defined as having both motor and vocal tics for a period of longer than a year. And then there are various other tic disorders, such as chronic tic disorders, or persistent tic disorders, motor or vocal, which are within that spectrum. And tic disorders are quite common, particularly in childhood, affecting up to really about 5% of individuals. They usually onset between about 2 and 8 years of age, most commonly at about six years of age. And they tend to run in families. So, they have a strong genetic component, also influenced by environmental and contextual cues, and also some psychological elements as well.
One of the unique features about tics is that before people have tics, they will experience what’s referred to as a premonitory urge, which is a sensory sensation and usually described as an itchiness or a tingling that occurs for the person and indicates to them that their tic is about to come. Another interesting feature is that they tend to wax and wane, and they change over time. Sometimes, they’re more and sometimes they’re less. And this can be with vocal and motor tics at any point.
Another point that might be of interest to the listeners is that, for a lot of people, they tend to grow out of most of their tics as they get to early adulthood. And there’s been some nice longitudinal studies, particularly from Denmark, where they’ve followed up quite big cohorts of patients who’ve been known to clinics there, and seen that, for many of them, the tics will reduce over time.
[00:03:43] Dr. Seonaid Anderson: Thanks so much, Tara. Thank you for that overview. And am I right in thinking that another issue around Tourette’s syndrome is that it has a bias in affecting males more than females, and also there are often co-morbidities or co-occurring conditions that come along with it?
[00:04:02] Dr. Tara Murphy: Yeah, absolutely, two really important other points. So, in Tourette’s syndrome, the prevalence seems to be about four males to every female, depending on which study you look at. And then the co-occurring conditions are incredibly frequent. So, it’s thought that about 80% to 90% of children with Tourette’s syndrome will have one other condition, and probably about half of the children with Tourette’s syndrome will also have an additional one, so two or more conditions. And it wouldn’t be unusual to see a child with attention deficit hyperactivity disorder, perhaps with a co-occurring anxiety disorder. Autism spectrum disorder is also very common. Obsessive-compulsive presentations and disorders are also common. Specific learning disorders. And one of the areas that families report impact them the most are these rage attacks, which tend to occur more commonly in children who also have co-occurring ADHD. But I certainly know, as a clinician, it’s one of the things that is most important to get an understanding of, what are the co-occurring conditions in addition to the tics and how can support and understanding be provided around those areas.
[00:05:10] Dr. Seonaid Anderson: That’s great. And so, you’re stating clearly there that, in fact, it doesn’t seem to be rare. That might be one of a number of misunderstandings about this condition, that in practice tend to have tics as well. And would you say something around the issue of swearing and Tourette’s syndrome? Because often I think the general public have a view that swearing is part of Tourette’s syndrome.
[00:05:36] Dr. Tara Murphy: That group of tics, vocal and motor swearing or in gestures or signs, are called coprophenomenon. So coprolalia, which is swear words, and copropraxia, which are the obscene gestures, and they are pretty uncommon in Tourette’s syndrome, affecting, the research suggests, 10% or 15% of people will have them at one time or another. But they have often been captured by the media as something that happens much more commonly, and individuals who have the coprophenomenon tics are often individuals who have more severe presentations in general.
[00:06:10] Dr. Seonaid Anderson: And I would imagine that you mentioned anxiety there. I would imagine that having a condition like Tourette’s syndrome may also involve higher anxiety and maybe depression. Has there been research into self-harm or suicidality in the Tourette’s syndrome community?
[00:06:28] Dr. Tara Murphy: Yeah, that’s a really good question. And that area of research is probably one of the lesser explored areas. There have been a couple of studies looking at depression in adults, and it certainly exists, and we see it in our clinical practice, but it’s not a particularly well researched area. Certainly, space for more understanding in that area, generally, but there’s been a lot more research in anxiety. And that can come in many forms generalized anxiety or a specific phobia. Separation anxiety often occurs in younger children and is, yeah, commonly an area that families are seeking support for as well.
[00:07:04] Dr. Seonaid Anderson: If I understand correctly, this phenomenology of Tourette’s syndrome seems to be similar worldwide. So, it’s a biological basis for the cause of Tourette’s syndrome, but in your point of view, do you think there are differences between cultures or countries in terms of the expression of Tourette’s syndrome?
[00:07:24] Dr. Tara Murphy: Yeah, that’s a really interesting question. And if we look to the literature on this, I think we’re having a much more interesting and informed conversation now than we would have been 10 years ago. There has been an increase in research internationally around prevalence rates. There have been some quite large studies. And most of the studies are carried out in the Americas. There have been studies in the United States and Canada, in Brazil and Argentina. There have also been studies in China, all over Europe. And increasingly what we’re seeing are case studies as well. So individual cases, which researchers and clinicians have written up. And I think in terms of prevalence rates, we’re seeing pretty similar results across the various countries, typically about 1% with Tourette’s syndrome. And some of the case studies that have been written up have also been very interesting, because they often describe an individual who’s come for care, and they have typically been responsive to either medication or behavioural therapy, which are treatments that have been developed in Western and high-income countries. But it’s good to see that professionals are drawing on guidelines and information that’s available and offering that locally as well. There was one study also just where I remember it carried out in Uganda with children who are HIV positive, and they had elevated rates of tics alongside other presentations such as autism and other conditions.
[00:08:51] Dr. Seonaid Anderson: OK. So, it sounds like from what you’re seeing then that in the countries where there have there has been research into Tourette’s syndrome then the prevalence rate seems similar apart from sort of particular circumstances. Is that right?
[00:09:06] Dr. Tara Murphy: Yeah, absolutely. And there was one quite large study in Mauritius that was carried out. It’s interesting if you look at the distribution of where the studies are, there typically in northern hemisphere countries, but there have been a couple in the southern hemisphere. And a really nice study in Mauritius a few years ago was carried out and confirmed that number of cases within quite a big cohort, a population study.
[00:09:29] Dr. Seonaid Anderson: Moving onto some of your interests, why are you interested in tics and Tourette’s syndrome in different cultures or countries? Can you give us a little bit of that background?
[00:09:42] Dr. Tara Murphy: Thanks for thinking about this. Yeah, I’ve always been interested in culture. I spent most of my professional life working here in London, and we do see very diverse people coming to clinic. So that has always captured my interest. And the potential influence of cultural factors, big cultural factors, macro culture, but also smaller culture factors within people’s own homes, and it’s always, I think, in part because tics are responsive to environmental triggers and consequences. So, you can have people responding with the same tics in very different ways to different cues in their environment. And I think that is only magnified when you go to an even more diverse culture.
So, in 2018, I had the opportunity to volunteer with Butabika-East London Link in Kampala, Uganda, and I worked at the children’s ward there in the hospital, seeing patients for most of the year. And in that time, I was seeing families with children with all sorts of presenting difficulties, most commonly epilepsy but also intellectual disability and autism, functional neurological disorder, anxiety disorder, all sorts of challenges that they would come for consultation with. But in particular having a long-standing interest in tics, I was very interested to see what their needs were around tics. And surprisingly I saw very few patients come in for difficulties related to tics. We did have several cases, but in terms of seeing several hundred children over the course of that year, it was quite a low number of children with tics. A couple of cases that were seen had quite marked and severe tics. Some of them had some of the coprophenomenon that we were talking about earlier, which I think was probably a main motivator to come. Some other children had also been misdiagnosed, and I know this happens all across the world, particularly if they’re seen by a non-specialist. And so that was a very enriching and hopefully helpful to the family contribution, where we were able to offer helpful psychoeducation on what the tics actually were and indicate what treatment might be useful. I was able to do some research while I was in Uganda with some of my professional colleagues as well.
[00:11:55] Dr. Seonaid Anderson: There was a paper, wasn’t there, that was written entitled “Why Don’t Children in Uganda Have Tics? A mixed-methods study of beliefs, knowledge and attitudes of health professionals.” And you did that when you were out there in the clinic.
[00:12:09] Dr. Tara Murphy: That’s right. Rodin et al is the reference for it, and I mean, that was really a privilege to be able to work across various district general hospitals and clinics in Uganda. And while we were there, we had the opportunity to interview six professionals about their knowledge and attitudes around tics but also to get some questionnaires completed by the professionals that we were collaborating with and teaching there. And we were able to get a pretty good understanding of their, well, knowledge and attitudes around tics. And one of the things we were really pleased to see was that there was quite a bit of understanding about tics, but it wasn’t always translating to the clinical practice. People indicated that there had been quite a bit of misdiagnosing and an uncertainty if tics were diagnosed about what next steps might be. And in part, that has to do with knowledge but also provision of trained therapists and also availability of medication, many of which are very expensive if you’re living in a low-income country.
But the qualitative information was really helpful to understand there, and I saw not just in relation to tics but also in relation to other conditions, neurodevelopmental conditions such as autism and epilepsy as well. But there was quite a lot of stigma. And I think that might be one of the reasons that explained why we had a low presentation for people coming to clinics with tics. There was often– and I think this probably has improved. This is something else I understood from my colleagues has improved over time, but there is quite a lot of stigma associated with having a neurodevelopmental condition, and tics would be one part of that. And it’s also very expensive to travel if you have very low levels of income. So actually going and seeking a health professional can be quite prohibitive. Sometimes we would see people in the clinic who’ve been traveling for two or three days to come for a consultation. And if they were offered further input beyond the initial assessment, they were often unable to make the return journey because of the cost and perhaps difficulties in leaving their home. But I suppose one of the really positive messages that came out of the research was that professionals are really keen to develop their expertise. There is an appetite for having additional training. And I had the privilege of having a group– well, I had several groups of health professionals who would often sit in in clinics, but I had one group of psychologists who worked alongside us for most of the duration of the year that we were there. And we were able to treat several individuals with tics and I would often do the first couple of sessions, and then I would hand over the piece of work to a trainee psychologist and then be able to supervise them on the job, so to speak. So that was really satisfying, and I’m hopeful that that is continuing.
[00:14:57] Dr. Seonaid Anderson: And I’m getting the feeling as I’m listening to you talk, previously in the Tourette’s syndrome literature, it’s previously been suggested that Tourette’s syndrome might be absent or very, very low in sub-Saharan Africa or in certain communities, in the African-American community, for example. But it feels like it may not be the case. It may be just as prevalent but actually accessing services and health care et cetera may be why it’s perhaps under-represented?
[00:15:28] Dr. Tara Murphy: I would definitely agree with that, Seonaid. I think, again, it’s much better than it was 10, 15, 20 years ago. And I think the media has done an awful lot to disseminate often helpful sometimes less helpful information. But I think people are understanding much better. And then it’s about the pathway and the process of once they have that initial idea of what tics and perhaps co-occurring conditions might be, who can they go and speak to about it? And if they go see a GP, then who could the GP refer to for a more specialist opinion? I also think a lot of the information we have available online, some of the charities and some of the literature that’s available is also increasing people’s confidence in terms of getting a better understanding of the difficulties that they’re dealing with.
[00:16:12] Dr. Seonaid Anderson: There’s certainly more and more activity from Tourette’s syndrome patients associations in different countries. And in the UK, of course, there’s Tourette’s Action, which has loads of information, leaflets, videos, et cetera. And people can go and find out a lot of information from places like that as well. I wonder what we might be able to learn from countries or communities where tic impact seems low. I mean, it might be low for a variety of reasons, but what would you feel if I was to say if society doesn’t see tics as a problem, the individual might not either? Is that something about the aware and acceptance of tics that might be useful?
[00:17:00] Dr. Tara Murphy: Again, I think it’s a really interesting point. We know the environment that the individual lives with certainly influences how their tics are, how they feel about their tics. If you look at the literature on this, Carol Matthews did some research about 20 years ago in Costa Rica. And she was doing a genetic study, but she interviewed a load of families who had children with tics. And although they had tics, they indicated that they weren’t presenting them with a huge problem. They were coping OK. So that was a really interesting study.
There was another study that was done between, I think, it was Argentina. And again, the researcher saw families, and they indicated that, yes, they had tics but they weren’t problematic. I saw an interesting study a few months ago comparing a group of adults– it was perhaps young adults from Japan with the group here in the UK. And although the tics were more severe, which we do see in studies in the group in the UK, the quality of life was reported to be lower in the Japanese group. And as I understand it, tic services are developing there with treatments and everything else. So I would say that there seem to be differences. And some of this might be about the way the information is gathered and understood, but there do seem to be differences between cultures. And if, as you say, a culture and a society is not seeing it as much of a problem, I wonder how that influences the individual. I mean, you do hear a lot of people talking about pain from tics and repetitive movements, but I also think a lot of patients describe the social consequences of having tics and embarrassment. That is going to be interplaying with the society that they live in.
So, I think we could all do a much better job of understanding that and thinking about how we respond to people with tics and/or many other conditions as well.
[00:18:46] Dr. Seonaid Anderson: And that kind of builds on the neurodiversity sort of movement, I guess, moving forward, that there are so many– what is the definition of normal, as it were? There’s so many people. There’s supposed to be one in five people with ADHD or tics, or autism, or dyslexia, or things like that as well. And some of the countries that we’re talking about here or the communities. I mean I’m wondering about the social factors such as difficulties and challenges with basic needs like housing, employment, and hardships, and whether tics perhaps might be viewed as the least of somebody’s problems in terms of all of the other challenges that they’re facing in certain communities as well.
[00:19:31] Dr. Tara Murphy: I think we certainly saw that in Uganda, where incomes are incredibly low. And if your child has life threatening epilepsy, then that is obviously going to be something that is more concerning to you. But again, I think it’s very much in the individual and how they cope with and understand their own tics but also the important others around them. But there’s always going to be that interaction with the kind of stressors that they’re having. And again, there’s been some nice research looking at life stressors and tics. And there’s certainly a relationship between them. And I think any individual only has so much capacity to deal with the things they have to deal with day to day. But again, I guess the other thing to say about tics is they’re so varied in terms of severity. And we don’t have this clear relationship between severity and tics. It’s a much more complex kind of process. Some people have quite mild tics and are severely affected by it. Some people have more moderate or severe tics and seem to be affected less. And I think as a psychologist that’s incredibly interesting. And again, drawing on the theme of this discussion, cultural factors, we still have an awful lot to learn. And we talked about this previously, and there may be factors in developing countries about why people might be possibly less bothered by their tics. Could it be a greater sense of community, which I’ve certainly seen in Uganda than we might have particularly here in London but also other more urban centres? Could it be an emphasis on exercise? And we know exercise helps tics. It certainly doesn’t cure them, but it can certainly reduce tics and someone’s capacity to deal with them. Could it be sunshine and associated vitamin D or low sugar diets? Again, these are all questions. They’re certainly worth thinking about how we might do research in that area. We really need to focus on more collaborative, joined-up research.
There was an interesting article that came from a Chinese group, Yang et al, a couple of weeks ago that just started to make me think about this. And they had looked at publications in the last decade in Tourette’s. And one of the really positive findings is that there’s been an increase over the years in the number of publications that have been coming out on Tourette’s, but one of the limitations of the literature that the authors comment on is that most of the publications come from very few centres primarily from the United States, quite a few from Europe as well. But one of the comments they make is the need for more international collaborations. And I would be so pleased if they could include some of our colleagues in medium and low-income countries as well.
[00:22:12] Dr. Seonaid Anderson: I think that’s a great point in terms of trying to include those sort of harder to reach communities or countries even in research, because they do seem to be underrepresented, like you were mentioning that there’s a top heavy– northern hemisphere has had a lot more research perhaps in terms of this area as well. I wonder how we might be able to reach those countries more and those communities more and engage them in– you mentioned international collaboration as well, but can we have a large collaborative research study where different countries who are not normally included in research are involved? Is that something that you think would be potentially possible?
[00:22:59] Dr. Tara Murphy: Yes, Seonaid, I think that would be amazing. And I think in the field of Tourette’s in general, it’s quite a small field, but it’s always about finding a collaborator with a specific interest in this area. And of course, the perennial question of getting funding, but there are collaborations that exist. And I think it’s just about accessing people. I imagine it’s even easier now, given that most countries in the world have got pretty good internet access. And I think probably looking at big centres, big teaching hospitals like my experience in Uganda is a good way to create those collaborations. And I think probably some of our funding bodies would certainly see the benefits in that. So yeah, I think it needs some more thought.
[00:23:46] Dr. Seonaid Anderson: I know that we’ve discussed previously that there are no NICE guidelines in relation to tics or tic disorders in the UK. So that would be perhaps a step in the right direction also in terms of providing access to diagnosis and treatment for people with tics.
[00:24:05] Dr. Tara Murphy: Given the availability of information, such as NICE guidelines, it’s not just centres and individuals in the UK who access that kind of informed high-level information. I certainly know when I was in Uganda, if I saw an individual with a specific condition, I’d often reach to NICE guidelines for other conditions, even though I wasn’t in the UK context. And there may be some limitations to that, and certainly there may be limitations in the provision of interventions and treatment, but it gives you a really good place to start.
So, I think if we could work towards creating NICE guidelines, and I know there are centres here in the UK who are targeted on working towards that, then I think it could be beneficial well beyond the UK as well.
[00:24:50] Dr. Seonaid Anderson: Absolutely. And increasing health care professionals’ understanding of tics and Tourette’s, and the possible treatments, such as medication but also behavioural therapy and other new initiatives coming through as well. So interesting talking to you, Tara. Thank you so much for taking the time today. It feels like although tics and Tourette’s syndrome is fairly niche, it’s covering so much of psychology in terms of stressors, stigma, and everything else. Would you have any closing words?
[00:25:26] Dr. Tara Murphy: The point about collaborations really rings true. And I’m hoping, if you have any listeners who are interested in cross-cultural collaborations or there are early career professionals who are interested in gaining experience, that they would reach out to specialist centres. And there is obviously a formal pathway for how that is followed through. But I see that as a key element to creating expertise and specialisms, really, internationally.
So, if you do have listeners who are interested in that area, yeah, I think probably that would be a good place to start reaching out to teaching hospitals and specialist centres.
[00:26:09] Dr. Seonaid Anderson: Tara, thank you so much for speaking with me today. And hopefully helpful for many people listening, so thanks for joining me.
[00:26:16] Dr. Tara Murphy: Oh, thank you so much, Seonaid, and I appreciate your time and all your listeners’ time as well.
[00:26:21] Dr. Seonaid Anderson: Thank you. So just to sign off, you can follow me on Twitter @seonaidanderso2. And also visit my website, www.neuro-diverse.org. And for more details on Tourette’s syndrome, please visit the ACAMH website. That’s www.acamh.org. And also you can follow them on social media by searching for ACAMH– A-C-A-M-H.
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