Nip in the Bud® Podcast - The children's mental health health charity

Nip in the Bud with Lucy Toghill: How can parents gain more understanding Tourettes Syndrome?

• Nip in the Bud Children's Mental Charity

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Lucy works part time at the Charity Tourettes Action and consults with schools and education professionals to optimise understanding of, and support for pupils with TS. She provides resources and training to education provisions in order to increase their knowledge and understanding and to help them learn how best to support a learner with TS. Lucy has a background of SEN in schools and has worked in mainstream schools as a primary school teacher for 15 years before joining Tourettes Action. She also has a son with TS.

Today we talk about Tourette’s Syndrome, what this means and how it may present. We also speak about how parents and carers can support a child with TS and where they can find information and advice as well as a thriving community that they will be welcomed in to.

Tourettes Action: https://www.tourettes-action.org.uk/

Nip in the Bud - Where to get help

https://nipinthebud.org/where-to-get-help/




00:00:06.081 - Alis

Nip in the Bud is a charity that works to support children's mental health by working with mental health professionals of the highest standing, producing free, short, evidence-based films, podcasts, and fact sheets to help parents, educationalists, and others working with children to recognize potential mental health conditions. Today, I'm talking to Lucy Toghill. Lucy works part-time for the charity Tourette's Action and consults with schools and education professionals to optimize understanding of the support for pupils with Tourette's syndrome. She provides resources and training to education provisions in order to increase their knowledge and understanding and to help them to learn how best to support a learner with TS. Lucy has a background of special educational needs in schools and has worked in mainstream schools as a primary school teacher for over 15 years before joining Tourette's Action. She also has a son with TS. Today, we talk about Tourette's syndrome, what this means, and how it may present. We also speak about how parents and carers can support a child with TS, and where they can find information and advice, as well as a thriving community that they will be welcomed into. Hello, and welcome to Lucy. Lucy, could you start by telling us your background and what you currently do?



00:01:44.851 - Lucy

Yeah, no problem. My background is in teaching, primary teaching, predominantly, for over about 15 to 20 years now, really, both in mainstream and SCN. I've got two children myself with SCN at home, one, particularly, that has Tourette's syndrome. I'm currently the education manager for the charity Tourette's Action. I've been working with them now for just over five years, actually and in that role, I support families and education provisions on how best to support a child or a student in their school with Tourette's syndrome or in any education provision.



00:02:21.141 - Alis

Is it any age child? Is it specific?



00:02:24.811 - Lucy

Absolutely. Yeah, we help children from very, very young right up into the world of work. So yeah, the whole spectrum.



00:02:31.111 - Alis

What does Tourette's Action do?



00:02:33.861 - Lucy

Tourette's Action is a fantastic charity. I personally used them myself when my son was young, actually, to get through the diagnostic process but it's a charity that works in England, Wales, and Northern Ireland and it's the leading support charity for people with Tourette's syndrome and their families. What we tend to do is aim to help people with Tourette's receive practical support and social acceptance that they need to help them live their lives to the full, really.



00:03:01.081 - Alis

Thank you. What brought you to work with children and families in this field? You said you've got a child yourself with Tourette's. Has that been your way in?



00:03:11.631 - Lucy

Yeah. I've worked in education for many years, never really thought I came across a child with Tourette's, although looking back, I did. I wasn't in that world at the time of SCN, specifically. Then I had my own child, who's 18 now. When he was six, he was struggling and developed tics. We sought advice and got a diagnosis. I say that very flippantly, it's a very long process, we were told and signposted to Tourette's Action, the charity, and they were just a mindful of information for us. It was so lovely to know that there were people out there to help.



00:03:48.751 - Alis

You say it's a long process getting that diagnosis. Why? What is that process?



00:03:55.861 - Lucy

It's because it's a very fluffy pathway. There's no one diagnostic pathway. There's no NHS guidelines at the moment. We're working really hard to get that. When people go to the GP, it tends to be, well, they can refer, but if you haven't been having tics for over 12 months, they'll probably turn you away because one of the criteria for diagnosis is to have had tics for 12 months because it could be another tic condition. They won't even think about referring until then.



00:04:26.241 - Alis

You were just talking about tics then. Could you tell us a little bit more about what you mean by that and really your understanding of Tourette's syndrome?



00:04:34.301 - Lucy

Well, Tourette syndrome is an inherited neurological condition, often abbreviated as TS. Really, it affects one school child in every hundred. It's a lot more common than what we think. It's not the rare condition we think it is and it's mostly common amongst boys. The key features, if you like, are tics. These are involuntary sounds and movements that are very, very hard to control. Remember, they're completely involuntary. Over 300,000 children in the UK are living with Tourette's, so it's not rare.



00:05:07.341 - Alis

Why is there less understanding around something like Tourette's? If it is one in 100, similar to autism, for example, why do we not know as much?



00:05:21.761 - Lucy

I think because there's no one diagnostic pathway, there's no NHS guidelines. It's a bit of a postcode lottery to diagnosis, really, and the routes that people take and the support that they have in their area but I think the one thing that doesn't help us is the myths and misconceptions out there portrayed by the media. Quite often that this is a swearing condition, and this is not a swearing condition. Swearing ticks are what we call Coprolalia, and this happens in about one in 10 children with Tourette's syndrome. It's not just about that, that's one tick of thousands.



00:05:55.251 - Alis

That understanding is often wrapped up in mis knowledge, misinformation that we're given and I suppose that's where your charity comes in, in as much as it's giving us much information. Hopefully, that's what this podcast will do, actually, is give some more information on what to expect with TS. Is it linked to anxiety or is that another myth?



00:06:20.881 - Lucy

Well, anxiety is a massive fuel to tics. We know that there are triggers to our tics, environmental factors as well, and sensory issues. But predominantly, yes, anxiety is a massive fuel. So if we are being anxious and we have anxious times, that can trigger our tics. So a lot of the advice is to not focus on the tics because they're very suggestible, but to go back and look at those triggers and look at the underlying anxieties and see if we can help that rather than focusing on the tics themselves.



00:06:50.881 - Alis

What do you mean by they're very suggestible?



00:06:53.871 - Lucy

If we talk about tics, if we're around other people that tick, that can make us tick more. We tend to try and ignore tics where possible. We tend to distract people away from their tics and not talk about them where possible, as long as there's no safeguarding or danger around it. The best thing is to just ignore it and distract them from that.



00:07:15.721 - Alis

Would you say that's the right approach, even with very young children? I know you were saying, try and get to the anxiety behind or beneath, but if they're young, they might not be able to articulate that.



00:07:27.801 - Lucy

It's very difficult for young children. It's all about a psychoeducation, their understanding of what Tourette's is, what a tic is, how I can vocalize that to other people, what does it mean to myself and lots of families are on a different stage in that diagnostic process and how they want to talk about it to their children. We meet lots of parents that don't want to address it with their children, don't want to stigmatize them very early and then other parents are really proactive about it and want their children to know about Tourette's. It's a very personal journey, our advice wouldn't be one way or the other, really. We do have lots of resources on our website to help children understand about their Tourette's because we know that that's lacking from the clinical side. It shouldn't be, but it is. Many children, if they get a diagnosis, it's a case of, 'yes, it's Tourette's, off you go'. There's not a lot of support out there, there's a few places that will support, but generally, it's very poor.



00:08:27.711 - Alis

We'll put your charity in the show notes so that people can get to those resources nice and easily. You talk about the support and resources, but is there a treatment for Tourette's syndrome?



00:08:41.551 - Lucy

Well, treatment is a very big word, isn't it? In terms of what we can do for Tourette's syndrome. There's no one cure for Tourette's, unfortunately. It doesn't work like that. We can have access to medication and therapies. Medication seems to be a bit of a last resort for parents because of the side effects that come along with them. Parents tend to go down the therapeutic route in terms of CBT therapies, and the gold standard, if you like, of therapies in the Tourette's world would be what we call CBITs, and that's Comprehensive Behaviour Intervention for Ticks. Unfortunately, not many people across the UK are trained in that, and we do offer that through outside agencies. But that tends to be a very holistic approach encompassing psychoeducation, so understanding about Tourette's, what that means to me and how to vocalize that to other people. Relaxation techniques, thinking about the anxiety side, Alis, is very important. Working on self-awareness training. Sometimes they'll look at a tick hierarchy, and there might be some habit reversal techniques within that if a child is old enough to take that on. Then certainly establishing a social support network and hopefully, therapists will sign post to Tourette's Action for that because we do lots of people that are looking for support.



00:09:57.351 – Alis

What things do you do as a community?



00:09:59.811 - Lucy

Gosh, we do a lot. We have a fantastic support network at Tourette's Action, where we offer lots of support groups around the UK. That's in person, and we do online support groups as well. I have to also talk about our fantastic TICfest events where we take families away for the weekend. It's funded by Children in Need, a donation as well for parents. We do lots of fun activities, but the most important thing about that is it gives children a chance to meet other like-minded children, realize they're not weird, Tourette's is quite common, and there are other children that share that with them. It gives parents a chance to meet other parents, like-minded parents.



00:10:42.411 - Alis

Do you notice a positive impact on this community building?



00:10:47.671 - Lucy

Amazing. I mean, from my own experience, when Tom was little, we never really talked about other people. We just focused on him and what it meant for him. Then one day when we went to Tourette’s Action, we met another family and he said, 'Oh my gosh, I thought I was an alien and I thought I was the only person.' It just didn't occur to us to have that conversation with him and to think that he might feel like that so absolutely, the impact is massive. Many children feel alone. They might be the only child in their whole school with Tourette's and tics. I think it has a massive impact to know that actually we're all pretty normal in the Tourette's community. If we can use that word, what is normal? We're not aliens, we're not weird. We just have a condition. Someone else might have another condition, diabetes or lots of different things so it's about learning about it and normalizing it where we can.



00:11:36.001 - Alis

What have you done to support the children and families through your charity? How have you helped?



00:11:42.161 - Lucy

Personally, I work with schools to provide training if they've got a child with Tourette's and they're not sure how to support them. And families approach us in order to get support if they feel their children are not supported in education. And that might be through things like exam access arrangements or EHCP's Educational Health and Care Plans and things like that. Or it could just be talking to school and offering them some training or allowing them to ask us questions to seek advice and support around issues that they might be facing at schools. But certainly for families, again, we offer the TICfest events, we offer support networks for them, we offer some fantastic online groups, which is really good. We do lots for parents, so it always encourage them to get in touch and reach out to the charity.



00:12:30.321 - Alis

Is there a point when their child is too old to reach out to you?



00:12:36.291 - Lucy

Not at all, no. What is a child, you know? We have parents ringing up about their young adults because they're worried. We do lots of support for adults as well, not just children, that's specifically my area. But my colleague, Ione, works as an advocate for adults and young people as well so we've got lots to offer right into the world of work. We do lots of training and advocacy in the workplace as well. Everyone's a child somewhere.



00:13:01.601 - Alis

Absolutely. What would you want parents to know if their child is beginning to display tics, they've noticed this is starting to be a habit, if you like, what should they do? What would be the first steps you would suggest?



00:13:20.061 - Lucy

I think the first steps is to take some notes about it, either mentally or physically. Just think about when and where they're ticking, how often. Perhaps keep a diary of events when different tics change, because if they were thinking about gaining a diagnosis or just seeking support, the first thing we would say is go to the GP. As we said earlier, GP will turn you away if you haven't been ticking for more than 12 months. That's what they look for before they refer. But ultimately, I guess, this is such a specialist area. It shouldn't be, but as we said earlier, Alis, there's a lot of lack of information about it, even from GPs still. So we'd be looking at asking for a referral to a specialist, hopefully in area, but we can refer some places out of areas, too. I think it's really important that we go armed with evidence as to what our child is doing and the behaviours they're displaying because we want to make sure we get it right.



00:14:15.451 - Alis

What sort of things might a parent first see their child doing with regards to tics, or is it just so different per child?



00:14:23.471 - Lucy

It's very different per child. I can only speak from my experience where Tom was always quirky, and that's what often parents say, they've often been quirky, but quite often, like when we say Tourette's is an inherited condition, you're quite often within a neurodivergent family. Those quirkiness’s are normal for you, they certainly were for us. So lots of families don't realize it until it becomes very constant, possibly painful for the child. It's not really an issue until we get to that stage and yet it can be really hard, actually but vocal ticks, we can go through a few ticks if that's helpful Alis?



00:15:03.131 – Alis

That would be really helpful.



00:15:03.981 - Lucy

There are thousands of ticks, but the first few that we see quite commonly in primary years would be things like eye blinking, eye rolling, face grimacing, shoulder shrugging, limbs and heads jerking, things like that, abdominal tensing. We forget that actually some ticks are hidden, and we can't always see them when people are ticking and that will be more of the motor side, the movement side. Then we might have vocal tics, and these are sounds, and they're not just sounds, actually they can be words and whole sentences. This is more complex than I think people realize but the sounds can be things like whistling, throat clearing, sniffing, coughing, tongue clicking, grunting. The list goes on, really.



00:15:46.271 – Alis

I think that's really helpful, actually, because if a parent is listening to this and is starting to see some behaviours, I think that might just give them that push to go and seek some advice but I think, as you say, just start recording, just noting things down. So say a parent has done that, they've noted things down, they've gone to their GP, they've then gone through the long process and got a diagnosis of Tourette's syndrome for their child. What's their next step? What would you suggest they do next?



00:16:21.441 - Lucy

I would say, first and foremost, reach out to the charity because we do lots of support for families and children themselves. I'd also say educate school because we know we don't need a diagnosis to gain support at school, or we shouldn't but because this is such a misunderstood condition, it's really important the school know what this diagnosis means and the reality of it, because many educators out there are uneducated in this area, and they think it might be a behaviour condition. This is not, this is purely neurological and it has nothing to do with behaviour. It's not a learning disability. Our children are very capable but I think educating schools to help them understand how to best support our children because to be honest, Alis, they're in school more than they are at home, aren't they? It's really important that we get the support for them right at school. Then also educating family and friends, you know, it's quite a hard thing. Before a diagnosis, a parent can feel quite judged by the behaviours of their children, by society, friends and family, school and I think when they get that diagnosis, it's a bit of a relief in terms of there was a reason why my child acting in this way. It's a completely involuntary response. It's not a choice and a relief that it's not a parenting issue or my child being naughty. There was a reason. Then we can start to gain that support once we gain that understanding.



00:17:45.701 - Alis

I think you're right. That understanding that it's not a choice. They're not choosing to do something to be disruptive.



00:17:52.181 - Lucy

Definitely.



00:17:54.151 - Alis

You talk quite a lot about educating the school. How would you suggest a parent or carer works with the school?



00:18:02.411 - Lucy

I would get in touch with them. You can always give them my details. That would be brilliant, or the charity's details. Lots of the times when parents get in touch with us, communication has broken down with school and parent, which is why they've turned to us for support. In those cases, we generally say, either give school my details or we can contact school. When we contact a school, there's no judgment there. We know that this is very complex and challenging. The idea of contacting a school is just to say hello and that we're here because not many people know about the charity so it's just to let them know we're here. If they've got any questions, we can offer them free resources and training, and it's just to support them to support the children where we can.



00:18:47.081 - Alis

Yeah, I like that sense of it not being a blame situation. If communication is broken down, it just needs maybe somebody in the middle to be a bridge.



00:18:59.021 - Lucy

Definitely.



00:19:00.491 – Alis

I've heard that creative pursuits, drawing, painting, making music can help. Is that true?



00:19:08.931 - Lucy

Definitely. I mean, we know that many of our community are so creative. We do a Creative Awards at Tourette’s Action as well, which is a lovely thing for people to take part in but we just know being distracted and interested in a hyper focus, for example, can distract us from our tics and it can bring people such relief to to be able to get that distraction and to take their tics away for a bit. This isn't a long fix, but it does give them relief. So, yes, it's really important they pursue any creative activities or talents that they do have. Musical instruments, for example, Things like that will give them relief from their tics.



00:19:49.241 - Alis

The flip side is trying to suppress the ticks, and that's something that is something you would suggest not attempting to do.



00:20:00.301 - Lucy

Suppression is a very personal thing. Some children and many adults do have a skill to suppress. It's uncomfortable, it's painful, but they might have learned that over the years as a self-help tool, and it's very personal to them. I think the important thing to mention here, Alis, is that we shouldn't have any expectations that a child should suppress or can suppress. If they do have any suppression skills, we're only talking for a limited amount of time because it's very painful. I guess it's down to the child's choice, but we should allow them to let their ticks out in a safe way in a non-judgmental place like school by educating everyone around us, teachers, peers, because we just know if we suppress at home, we're going to have a massive build-up and we'll probably let lots of ticks out at home and that's an uncomfortable thing to have to deal with. The more we feel comfortable to let our ticks out when we need to, that's the best way, really.



00:20:55.061 - Alis

Is that something that you've seen then, children trying to suppress within school, but then they get home and they're just exhausted?



00:21:02.291 - Lucy

I think we have social pressures all the time, certainly in school. When you think of that quiet learning time at the beginning of a lesson where the learning objective is set, quiet reading in general, the library, the hall, assembly. As with society, there are expected places where people have to be quiet or are expected to be quiet, and that's unrealistic for a child with Tourette's. It is, again, about educating people around us that this is a difference, this is a disability that someone might have, and they might need to let their ticks out because it's a very painful thing and uncomfortable thing to keep them in if they're not happy to do so.



00:21:38.851 - Alis

Lucy, what could parents and carers do at home to support a child with Tourette's?



00:21:44.231 - Lucy

Well, it's all about psychoeducation, really, Alis, and understanding what Tourette's means to them. It's really important that we support our children's mental health. This isn't a mental health condition, this is purely neurological. However, it can affect a child's mental health if not dealt with correctly. Your body is doing things physically and vocally that you're not asking it to do. Remember, this is completely involuntary. If you've got no understanding of that and you feel that your body is out of control, you might get a bit cross at that and a bit upset as to what's happening so it's really important when parents feel the time is right to have that conversation with their children and again, we're not going to be prescriptive in that. We've got lots of resources, lots of books, social stories, etc. On the website parents can use with their children as and when they feel ready and some parents are never ready, and that's absolutely fine. It's a personal choice.



00:22:37.701 - Alis

Could you tell us a bit about homeschooling in the Tourette's community?



00:22:43.011 - Lucy

Homeschooling is a beautiful thing to do. We know that there's a massive homeschooling community out there, both outside the Tourette's community as well. It's a way of life. It's a chosen thing to do for families and the important thing is that family shouldn't be forced into that because they're not getting the correct support at school. Schools are legally obliged to meet a child's needs, to make adjustments where possible. And we should be making sure that schools are doing that. We don't want any parent to feel that they're not getting the support in school. They should be, and they're just going to leave and homeschool. We've all had those thoughts at times. A parent will think very carefully about that, hopefully, about the mental health of their child and whether schooling is right for them and possibly look at other options. But we don't want a family to be forced into that, Alis, to be honest.



00:23:30.971 - Alis

No, it's a really good answer, actually. It is a beautiful thing, but it needs to be through choice and not through lack of inclusion and understanding. You've given some really good pieces of advice and tips to parents. Is there anything that we haven't covered? Anything that you think, oh, if I'd known this as a young parent just starting my journey, It would have been really helpful. Or do you feel like you've covered it all?



00:24:02.861 - Lucy

I think we've covered it all for parents. But all I would say is being in the know, it's really difficult, isn't it, to reflect on that. But do reach out to the charity. That's all I would say. The charity do lots of help for families and children and adults with Tourette's. So that's the best place to start, really.



00:24:19.371 - Alis

Thank you for your time today and thank you for all the advice and we'll put all of what you've said in the show notes. Thank you, Lucy.



00:24:27.191 - Lucy

You're very welcome, Alice. Thanks.



00:24:28.361 - Alis

I hope you enjoyed today's conversation and are able to take something interesting and positive away from it. Our podcasts are sensitively produced and give evidence-based information, whether from academic research and experts in their fields or from lived experiences. They are created to help others spot early signs of distress and may require further monitoring and information on how to follow up and to get help. Learning about child mental health and understanding how to recognize potential disorders is an important first step for everyone caring for children and young people. Please visit our website, nipinthebud.org and go to our Where to Get Help page for organizations which can provide both support and further information to help you and those you care for. Any specific links that we've spoken about today can be found in the show notes. Finally, you can find Nip in the the Bud on all the socials and get more information and further support. Don't forget to subscribe, like and share with someone who you think may benefit from all that Nip in the Bud has to offer. See you next time.