Last week I wrote briefly about watching Kids With Tourettes: In Their Own Words on ITV. The programme was thought-provoking and created a great deal of discussion on social media. Earlier this week I spoke to Dr Tara Murphy who featured in the programme. I wanted to talk to her about Tourettes and find out how she uses behavioural therapies to help children and adults manage their tics:
Photo: Monique Feil
TH: How does the process of Habit Reversal Training work?
Tara: There are two different behavioural models which are used, but they both seem to use the same mechanism. There’s Habit Reversal Training (HRT), which has been studied for 40 years. Azrin and Nunn who did that first set of studies in 1973 had the idea that you got used to feeling the ‘tic signal’, also known as the premonitory urge, which gave you the indicator that the tic was coming, and then you did an action which meant that by using those muscles, the tic wasn’t able to occur.
They did research with lots of adults and children and I think it was probably a sign of the times that it took a very behavioral approach. Now that we’ve moved much more towards a neuroscientific understanding ¬we have more evidence that the mechanisms that underlie tic suppression are more related to the mechanisms in a person’s brain than just the opposing muscles they use to stop the tics. What the competing response seems to do is give something useful to do while you’re not doing the tic and waiting for it to extinguish.
TH: So it’s not straightforwardly about not ticcing or suppressing, it’s doing an action instead of ticcing that you can focus on?
Tara: Exactly. The other model that’s useful to know about is the Exposure and Response Prevention (EPR) model. I often use that with younger children who find it difficult to think about finding a competing response to every single one of their tics or have many tics they’d like to work on. Even if you do it one tic at a time it can become overwhelming for them. So what I teach them to do is to get used to the feeling of the tic signal, and know that it’s not going to do them any harm so they’re able to sit with it for increasingly long periods of time.
Sometimes we only start with ten or fifteen seconds, but children can learn to sit with the tic signal for an extended period of time. Then it’s about encouraging them to use the strategy in daily life as often as possible.
Some of the research shows that tics occur because parts of the brain, mainly the motor system, are overactive and the filtration isn’t as good as it could be. I take the concept from Duncan McKinlay, a Canadian psychologist who has Tourettes himself, of tics being due to leaky brakes. The idea is that what we’re doing with HRT and ERP is tuning up those brakes by controlling the tics.
Some colleagues and myself wrote guidelines a couple of years ago describing ERP and HRT. Both approaches have been combined with a range of other strategies such as relaxation, social support and education about tics in general, also called Comprehensive Behavioural Intervention for Tics.
TH: HRT works on the assumption that someone can feel a tic signal in the first place. From my understanding, this isn’t present to the same extent for everyone. Can behavioural approaches work for people who don’t feel a strong tic signal?
Tara: Research suggests that the tic signal usually starts at around nine or ten years, or at least children can describe it from that age. I’ve met some adults who don’t have any sense of the sensation. My experience with people who can’t initially feel it is that it is possible to train them up to do so. I’ve yet to work with someone who at the end of treatment has said ‘I still can’t feel it and I don’t think I can do this.’ But I’m sure there are some people who, even with a huge amount of training, still can’t feel it.
TH: My own experience of doing HRT is that I definitely have a strong sensation associated with my tics which I imagine to be a tic signal – the problem is that it’s so quick I can’t identify it before I tic.
I gave HRT a really good shot and preferred it to every other treatment option I’ve ever come across, but for certain tics it just didn’t work – especially with the leg tics that affect my mobility and with my ‘ticcing fits’.
Are some tics harder to treat using these techniques than others?
Tara: I’ve heard it said that eye-blinking tics are the hardest ones to treat. Some of the complex tics like a hop, skip and a jump, or a twirl can be quite tricky as well, but I don’t know if there are any hard and fast rules. I also think it’s up to the person to choose what tics they want to treat, because quite often I’ve heard children say ‘I really hate this loud vocal tic but I don’t mind the face grimace that I do.’
TH: Lots of people say the feeling of sitting with a tic is an exhausting, painful, process and can make more tics come on with a rebound effect subsequently. Have you come across this or is it different if you’re taking a more therapeutic approach?
Tara: Yes, I’m interested in this belief about the rebound effect because I don’t see it clinically. When researchers look at it experimentally in studies, what tends to happen is that when people who can suppress their tics stop putting in the enormous amount of effort required to control them, the tics do come back, but not at a greater level than if they hadn’t been carrying out the tic suppression.
We talk every session about ‘How was it after the tic suppression?’ and in the beginning people say ‘It was so difficult,’ but over the weeks they say, ‘Well actually once I left the room I continued suppressing just a little bit and actually on the way to the Tube I didn’t have any tics this time.’
TH: Do you think the word ‘suppression’ can be unhelpful because of the negative connotations it has for many people?
Tara: That’s a really good question, suppression’s not great, and the word habit in ‘habit reversal therapy’ isn’t that great either because it makes tics sound like habits you can choose to do or not do. I think we need a revolution in the language around Tourettes, but the first step is to train a few more clinicians in the behavioural therapies and then work on the language we use.
TH: The other thing you talked about in the programme was the importance of acceptance. What role does that play in a family’s life and in this process?
Tara: HRT and ERP probably work for about half or two thirds of the children and adults who try it. It doesn’t work for everybody and if you’re not able to manage the competing responses or the tic suppression then accepting and getting on with things is key. What’s really important is that it’s not just up to the child, but the family, the GP, the shopkeeper, the teacher, employers and so on, to understand and accept.
TH: After the programme I think some parents were worried that it would give teachers or other people the idea that their child isn’t trying hard enough to keep their tics in.
Tara: When I do behavioural therapy with children I always ring their teachers and explain that HRT or ERP isn’t easy and that it takes up time attending appointments, and mental capacity, at least in the beginning.
What we usually do is have about four sessions and see if it’s working for the person. My experience is that for the first few weeks it’s really hard work, but then you hit a plateau where people say it starts working automatically. I guess it’s a bit like learning to drive or ride a bike – your brain just starts saying, ‘Actually this is getting easier. I don’t have to work so hard to do it.’
TH: Presumably it’s not something you’d use all the time? You’d expect people to use it more when they’re doing particular activities wouldn’t you?
Tara: Absolutely, I’m interested in people trying it out in daily life as much as possible but you’re bound to put in more effort if you’re at the cinema than if you’re sitting down watching TV in your own living room.
TH: What advice would you give to a child or family that was thinking about a behavioral therapy like HRT?
Tara: One of the questions I ask the child – is ‘How motivated to do this are you?’ If they’re happy with their tics and they’re not affecting their quality of life then we do the acceptance work with whoever needs it – a parent, teacher, or sibling for example.
If anyone reading your blog is interested in trying behavioural therapy, I’d say go to your paediatrician, neurologist or GP and see if you can find a therapist, because for those it does work for it can work really well.
TH: One of the things I found most useful about doing HRT wasn’t necessarily the impact it had on the tic we were working on, but the structure it gave me in my mind to work on other tics or problems or behaviour as they came up. It became an approach I could apply more generally rather than to one tic in particular.
Tara: That’s really interesting because it’s about problem solving. I think we often believe we learn to solve problems automatically, when in fact taking an idea apart really carefully and understanding it can be useful. With HRT you think about all the tics, you think about the detailed description of each tic, you think about the process you go through before you tic, where and when they occur, and then you understand them bit by bit and you work on each section.
TH: Is there anything else you’d like to say about the behavioural process?
Tara: There are several myths about HRT and ERP. One is that if you successfully treat one tic a substitution’s going to happen – again I don’t have any clinical experience of this. Tics wax and wane, they change over time, and I think if you can manage your tics better for even a few weeks – that’s better than not having tried at all. People often use the strategies they’ve learnt and apply them to subsequent tics.
A lot of people ask, ‘What’s the point of treating this tic because more are going to come?’ But as with anything in life, it’s about finding the skills you can transfer and hopefully use later on.
Another myth is that behavioural therapies for tics can make the individual feel sad, behave badly or have negative effects on family life. Once again, there’s no evidence for this and both long-term studies and my own experience suggest it’s quite the opposite – school attendance, mood, and acceptance of the tics all improve.
TH: Presumably a large part of why HRT or ERP works is because it’s done in a therapeutic context and in a supportive environment. If someone was trying to use a similar approach without that support wouldn’t it be much more difficult for the child?
Tara: Definitely. This is not an easy manual to buy off the shelf and use for yourself. One of the things they’re doing in United States is digitising the manual so it can be used online and I think for some people that’ll have its place. But you’ve got to remember it includes a lot of components and it’s complicated. There’s a clear therapeutic process – you can buy the manual, which is brilliant – but the fine detail comes with it being a talking therapy. Interestingly, therapists here and the US are starting to use HRT and ERP via Skype. Hopefully this’ll open up the possibilities for people who don’t live near trained specialists.
TH: One of the things that came over well in the programme was the idea of parents and children being aware that tics change and the understandable anxiety about the future that comes with this. So anything that gives you a structure for approaching those challenges is really important. One of the hardest things about Tourettes is how unpredictable it is.
What would you say to someone who thought Tourettes could be cured by better discipline?
Tara: Well it’s unlikely they’d think it was just Tourettes that could be cured with better discipline. They’d probably think lots of things could be cured that way. I’m a real believer in using positive reinforcement and structure, which is about finding what someone’s good at and nurturing that in a consistent way. We have a lot of studies and clinical experience to show that when people feel good about what they’re able to do they’re much happier.
TH: What advice would you give to a parent, carer or teacher who wasn’t sure if a child’s behaviour was due to tics or not?
Tara: You can look at the events that happen before the behaviour occurs, you can see how the child responds, you can see if the child’s doing it in an involuntary way – are there times when they don’t do it in the same situation? Do they have a tic signal before the behaviour occurs? What happens afterwards?
A lot of children who have tics have attention disorders as well. Quite often we see children who’re very fidgety and maybe there’s a misunderstanding that these may be tics – so it’s definitely worth thinking about because attention difficulties can impact on learning, friendships and behaviour if not understood and treated. If people have concerns they should go and see their GP and if they don’t have a good understanding they should ask to be referred to a specialist.
TH: Lots of vocal tics aren’t in context but what about the ones that are?
Tara: Tics are really suggestible and they’re different for every individual. Some people’s tics are triggered much more by their context than others. Over the years I’ve seen some really unusual tics and some of the more experimental studies suggest that just talking about tics can bring them on. So how can context not be important?
I’ve worked with children who’ve had teachers with particular movements like flicking their hair or touching their nose and the child picks this up as a tic. I just think tics are suggestible so we should make no judgments on that. We do know that having tics often goes with feeling angry very quickly and being impulsive, so those behaviours also have to be understood in the context of having tics as well.
TH: I was pleased that the issue of comorbidities came up in the programme.
Tara: Absolutely, quite often, even with bad tics, the tics themselves might not be the thing that bothers someone the most – it could be the obsessive-compulsive difficulties or the anger. I’ve seen this with quite a few adults I’ve worked with – initially they want to work on their tics but after a while they realise it’s not the tics that bother them, it’s the very short fuse they have that impacts on their relationships or on how they feel.
TH: Did you learn anything new from the process of making the programme?
Tara: Good question – I learnt a lot about my own nerves! Every individual I work with is different and I think having cameras in the room can change things because tics are suggestible and some people respond more to this than others.
TH: If you could do your own director’s cut of the programme what would your main message be?
Tara: I thought all the messages that came from the kids were great. I suppose what I might do is flesh out the mechanisms in the behavioural therapy a bit more. A one hour programme is brief and although it gave a lot of insights I could probably make a series of programmes, about the process children follow in behavioural therapy, the collaborative working with schools and other professionals, and the psychoeducational material which is very much the backbone of the intervention.
I think it would be really good if we could encourage people to go and see their GP, paediatrician, or neurologist. If there are any interested clinicians who read your blog they could contact Tourettes Action. What we’re trying to do is set up training on behavioural therapy, maybe this year or next. People really do need to be trained – just picking the manual up off the shelf isn’t easy, it needs training and specialist supervision, to begin with at least.
TH: Dr Tara Murphy, thank you.
I found speaking to Tara extremely interesting and it definitely added to my understanding of the approaches featured in the programme. My personal experience of HRT was positive. Although it didn’t have a major impact on my tics it did give me more confidence to manage new tics as they turn up.
I’d encourage anyone interested in trying this technique to speak to their GP or consultant. But if this approach doesn’t work for you or someone you care about, please don’t feel like you’ve failed. HRT and other behavioural therapies can be fantastically useful for some people, but they don’t work for everyone and that’s alright.
Thanks very much to Tara for taking the time to have this discussion with me. If you have personal experiences or perspectives on behavioural therapies please do share them in the comments section below.