Understanding Tourettes Syndrome – for school professionals

Transcript

00:00:01.201 – 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 and 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 and what this means and how it may present. We also speak about how school professionals can support a child with TS and where they can find information and advice to ensure they are properly able to meet their needs in order for the child to thrive and to reach their full potential. Hello and welcome to Lucy. Lucy, could you start by telling us your background and what you currently do?

00:01:39.471 – Lucy

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. But 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.

00:02:13.971 – Alis

Is it any age child? Is it specific?

00:02:18.181 – Lucy

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

00:02:25.131 – Alis

What does Tourette’s Action do?

00:02:27.711 – 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.

00:02:54.541 – 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?

00:03:05.481 – 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.

00:03:42.421 – Alis

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

00:03:49.711 – 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 tick condition. So they won’t even think about referring until then.

00:04:20.001 – Alis

What would you say are the main barriers to learning for children with Tourette’s?

00:04:25.721 – Lucy

Well, the barriers really can be their tics. Tics are very painful. Tics can take a lot of concentration. If we’re concentrating on our tics or trying to suppress our ticks, it can take a lot of concentration, very hard to do. And one exercise we do with schools, actually, when we do the training, is to try and keep our eyes open for a whole minute to induce an eye-blinking tic as such, and feel how uncomfortable that is to not be able to blink, because actually your eyes will start to feel sore, they might start to water. Tics, we know, are very suggestible, and I’m talking about tics, and there’s often a picture on the screen about someone with their eyes open and actually, what we aim to do is help educators understand that that’s really hard to do. If you’re going around all day trying not to blink, and remember that that’s just one tic. A child will have multiple ticks going on. It’s really hard to concentrate. That’s one of the biggest barrier, really, at school, is

to concentrate, because during that learning time, if a child is ticking or suppressing, they’re probably not going to be listening very well. It takes their concentration and focus away. Our advice would be to go back and check in with that child, make sure they’ve understood the learning objective. Do they know what they’re doing? Because quite often, they may not, and that’s something to consider. The tics, the pain of ticks, sometimes can be a real barrier to learning suppression, we’ve talked about, haven’t we? But if you’ve got tics like, throwing things, ripping things, head ticks, eye ticks, I don’t know, neck, hands, all those types of things that might give you problems for handwriting, for example. We know that some children find handwriting very difficult with their ticks, and it might be that pen and paper is not working at all, and they might need to have a laptop that might be easier for them to do the work on. Me personally, Alis, we had a bit of an interesting time with a laptop once at school with Tom because he had OCD as well, because that’s a very common co-occurring condition with Tourette’s syndrome. He would turn it on and off again, he would delete his work and throw the laptop with a tick as well. So that just wasn’t manageable. So if we’re thinking about things like exam access arrangements for our children and the barriers to learning they have during exams and things, for him, having a scribe, because that was his usual way of working in the classroom. Granted, he had any HCP, so we had that added support but, sometimes for these children, it’s about learning as early as possible how best they can record their work, because it can be really hard to get access to the curriculum. Our children are very highly intelligent, there’s no reason this is not a learning disability in most cases. Of course, some children can have other complex needs alongside the Tourette’s, but generally, it’s about accessing the curriculum and making sure that we can get that.

00:07:16.691 – Alis

You talked there about different types of tics. I know that there’s vocal, motor, simple, complex. Could you give us some examples? I know you said a few then, but just some examples that teachers might be able to recognize and then be able to respond appropriately to.

00:07:37.871 – Lucy

So motor tics and movement tics, would you like me to talk through some?

00:07:42.281 – Alis

Yeah, that’d be really helpful.

00:07:43.011 – Lucy

Some that are quite common within children and, you know, tics are endless, really. There’s thousands of tics but ones we might see in schools could be eye-blinking, eye-rolling, face grimacing, shoulder-shrugging, limbs and heads jerking, heads nodding, abdominal tensing, lots of internal tics happening that we don’t always see. Then on the vocal side, these can be sounds, these can be words, and these can be whole sentences as well, actually. Maybe things like whistling, clicking, throat clearing, sniffing, coughing, grunting, and things like that. So it’s something to look out for, really. And then we can have more complex ticks with things like jumping and twirling and touching objects and as I said, with the vocal

sounds, words and whole sentences. Because tics can be in context, actually it’s another thing for schools to be aware of. Some teachers say to me, ‘I don’t think that was a tic because I told him to hurry up with his work and he told him to shut up,’ or even worse. And although tics aren’t thoughtful, there’s not a lot of thought behind them, they’re very impulsive at times, tics can be in context, contextual and that’s very hard to understand when children are reacting like there’s a behaviour issue going on, but this is not a behaviour issue. This is a completely involuntary response to say probably the most inappropriate thing we’re trying not to say.

00:09:11.931 – Alis

If a teacher or a SENCO had noticed a trend of tics like you’ve just described, yet the parent hadn’t come in and said anything, what would you suggest they do?

00:09:25.921 – Lucy

I would definitely approach the parent. It’s quite a difficult thing to say to a parent that’s not in the SCN world, ‘I think your child’s got Tourette’s syndrome.’ It’s a big word, and obviously they’re going to be concerned about that because of the misconceptions around that from the media. Definitely approach parents. We talk about it in terms of tics. We don’t have to mention the word Tourette’s syndrome. We don’t even know if it is because, of course, there are other tic conditions it can be. But I would definitely mention what you’re seeing at school. Sometimes we see a difference at school than we do at home. Tics can be very anxiety-induced. We know there’s lots of anxiety at school with tests, assessments, and all the demands just of everyday work. I would mention it to parents, just bring that topic up. I mean, most parents would want to know if there’s any concerns about school and help them through that diagnostic process. Schools can make those referrals to CAMHS and encourage the parents to seek advice from a GP as well.

00:10:23.061 – Alis

Would you expect any child who has been diagnosed as having Tourette’s syndrome to also have an EHCP, or does that not necessarily come hand in hand?

00:10:35.891 – Lucy

Not necessarily at all. We have children with and without EHCPs. EHCPs is a massive topic, isn’t it, in itself? Probably another podcast for another day, really. But, EHCPs are there for if a school feels they’re unable to meet a child’s needs. I do believe there’s lots schools can do if they educate themselves around Tourette’s. We can talk about that in a minute, Alis, in terms of strategies. But there’s lots schools can do before we need to get to that stage of an EHCP. But absolutely, EHCPs are there for schools and parents that feel like their children may not be supported in that provision.

00:11:12.281 – Alis

Yeah, that would be really good to go on to now, actually. Just to go through some strategies, some approaches that educationists might take away from today’s conversation and be able to put in practice in their classrooms.

00:11:28.351 – Lucy

Brilliant. Well, the first thing we always say is to ignore tics where possible. We know tics are very suggestible, so the more attention we give a tic, even if that is positive, Alis, to be honest, someone had a throat clearing tic and we kept saying, ‘Have a sip of water,’ our mother instinct kicks in, there’s nothing wrong with that. But Actually, medical evidence suggests if we’re going to bring attention to it in that way, it’s going to get worse. As long as a child is safe, we will ignore where possible, we’re going to distract them. We talked about having activities that we would focus on and things we’re talented at, but have a box of tricks in the class, whether that’s fidget toys or a puzzle, or it might be that they want to listen to some music for 10 minutes in their earphones. Ask the child, they will have their vice as to what’s best to distract them and have that nearby, because sometimes, the tics can escalate and it’s not very comfortable. The other thing we would say is educate staff and people. If you have a child with any condition in a school, the best thing to do is to learn about it. We’ve got that obligation to support a child and learn about the needs that they have. So, we at Tourette’s Action do provide training for schools, for educators, and peers as well. We’ve got some fantastic resources to do things like assemblies or class talks, or even just one to one with a child, to learn about it, because we can only ignore those ticks if we educate people around us and that’s really important, especially for friends. But I would also say one of the biggest things we advise schools to do is to work on triggers. It’s very hard to stop the tics themselves but if we go back a step and look into the triggers of what their tics are, we can then once we’ve identified those triggers, we can then avoid those triggers where possible or make adjustments for that. And triggers tend to be, like we said earlier, Alis, anxiety-driven and sensory-driven. So is it the acoustics? Is it the lighting? Is it the smell of the room? And teachers, it’s good to do a bit of a sensory audit with the children, actually, to think about, actually, yes, there are common times of the day, common places, certain teachers that will be the triggers and quite often the children won’t be aware of this because they might not have the maturity or the psychoeducation to do that. So bringing children’s attention to that as well to develop their self-help tools as they get into those teenage years is really useful. I don’t know if you want me to carry on, Alis, I’ve got lots of strategies, really.

00:13:54.091 – Alis

yes please, Keep going.

00:13:54.931 – Lucy

Okay. We need a bit of a plan. Most schools for any SCN child will have some kind of people profile, passport, pro-former sort of thing and that doesn’t have to be part of their SCN plan necessarily or part of any HCP. Any child can have a bit of a plan at school for their tics. And it’s about using their pupil voice, asking them what are your exacerbators to your tics? What are your alleviators? And having a really strong plan in place for both staff and that pupil to know what happens when these tics occur and what we should do. Because what we want to do is not to be sent home but obviously, it’s the school’s choice

in their judgment in terms of are these tics causing exhaustion or pain? And there will be times we need to be sent home, but we want to manage these tics in school as best as possible, really. So we’ll be looking at things like movement breaks. In the primary years, we can have things like sensory circuits. I’m very passionate about movement breaks being meaningful for our children, and things like sensory circuits give you that meaning, don’t they? As they get to the teenage years, we don’t want them roaming the corridors. We want them to be able to go to the pastoral area, put their plan in place, whether it is listening to some music, some distraction to alleviate their tics, where possible. But I would say a big thing that we talk to schools about is about sanctions, and whether they should tell children off for a tic, because how do I know if it’s a tic or just neurotypical negative behaviour? And what we say is you’re not always going to know. I’m not always going to be able to tell you, you’re the best person to get to know that child but with a bit of training and support from ourselves, we hope that they learn how best to recognize a tic and how to talk to the children. Children will tell them, it’s about building that relationship. We don’t want children to be wrongly sanctioned for their tics because, again, that can have a massive effect on their mental health because, again, their bodies are doing things they’re not in control of so it’s not right that we should be sanctioning for that. So, yeah, build a relationship. Actually what a child wants to hear is for a teacher to get down to their level and say, ‘Do you know what? We’ve not had Tourette’s in school before. Let’s learn about it together, and we’ve got resources to do that’. Just the very thought of them being supported and understood rather than judged takes that anxiety away and in turn will lessen their tic so it’s something that’s really important to do.

00:16:23.561 – Alis

I think ultimately, if you really know that child, as you say, relationships are so important. Ultimately, even if you get it wrong and the behaviour isn’t a tic, but it’s a neurotypical underlying disruptive behaviour, the question would still be, why are they behaving like that? Why are they choosing to disrupt the class? There’s some sort of communication in the behaviour, isn’t there?

00:16:49.381 – Lucy

Oh, definitely. We always know, don’t we, if a child is misbehaving as such, there’s a reason. It’s usually a child reaching out and saying, ‘My needs are not being met.’ In the case of Tourette’s, I’m not saying they’re all angels. My son certainly wasn’t Alis when he was growing up but we can get behaviour alongside Tourette’s as a consequence, because, again, it comes down to psychoeducation. What does this child know and can they explain their tics? In terms of, we get a bit of class clown behaviour sometimes because children will tell us it’s easier to be known as silly or naughty in my class than it is to be known to be weird. We know they’re not weird, but if there’s no education in the school, they might be seen as weird asked by their friends why they’re doing that and stop doing that.

00:17:34.241 – Alis

It’s sort of safety in making people laugh rather than be laughed at.

00:17:38.371 – Lucy

Definitely. We have to be mindful of that, that there might be behaviour as a consequence. Lots of our children can display anger, feel a very strong sense of injustice if they are sanctioned for something they haven’t done, but haven’t got the psychoeducation to vocalize that and understand that. Alongside, and something we possibly haven’t touched on is co-occurring conditions.

00:18:01.901 – Alis

Tell me about that.

00:18:03.791 – Lucy

90% of children with Tourette’s will have a co-occurring condition. That’s not to say they won’t just have pure Tourette’s. Sometimes we come across children with just pure Tourette’s, but quite often, school or parents will have an inkling that something else is going on, and they’re often on the pathway to diagnosis for ADHD and autism. That’s not uncommon. But we know that the top co-occurring conditions very commonly come aside Tourette’s is ADHD, OCD, and autism. And sensory processing disorder, we know that about 80% of children with Tourette’s will have sensory processing disorder. And that far exceeds those, that knowledge about labels in shirts and bobbles in socks. We’re talking about things like acoustics, the sound, the lighting and things like that can all be triggers to our tics. So, quite often children say, ‘My tics don’t actually bother me. It’s my ADHD that’s bothersome to me because I can’t concentrate and focus on my work.’ I think it’s, again, it’s about educating schools that quite often when you see a child with Tourette’s, it’s not just about the Tourette’s and we need to learn all about it. There’s a lot more going on underneath the surface than we might think.

00:19:16.691 – Alis

Yeah. If you were to walk into a classroom and there’s a child that goes into that classroom with Tourette’s syndrome, what would you hope to see that learning environment looking like. I know you said we need to have pupil voice and we need to make sure that we’re asking them about their exacerbators. But what generic things that could teachers do to just make their classroom and you talked about that sensory across lots of different co-occurring conditions. What could teachers do to make their classrooms more easy on the eye, easy on the ear?

00:20:01.541 – Lucy

It’s, again, very different from every child. I mean, removing all those sensory exacerbators, I suppose. We’ve gone through times in teaching where we’ve got to have lots of display boards and colourful, you know, Making that minimal where possible, because they can all be triggers for people’s Tourette’s being over stimulated, actually. But educating the class, I’d love to walk into a class, and I’ve seen it actually in my younger child’s school, there’s a child with Tourette’s and I went in as a parent as an assembly, and this child was ticking throughout, and no one batted an eyelid. Quite clearly, they’d had training from myself, which was fantastic, but they’d educated the children. And that’s what I want to see, that no one is batting an eyelid Because what they’ve done in school is to normalize this for the child. Someone might have diabetes, someone might have glasses, and this child’s got Tourette’s, and that’s okay. We’re going

to celebrate everyone’s differences. I want to see that in a school, and good schools do have that, most schools do. But allowing other strategies for the child, like stepping out if possible. We know when we get to high school, we can have things like time out passes. What is important about that is we’re not sent out as a sanction. We don’t want any child being ostracized because they’re an inconvenience and they’re making a noise or a tic, and we can’t have that in the classroom. We don’t want any child to go through that. But having said that, we know that there will be something in that room at that time that’s triggering their tic. So allowing them to use that as a self-help tool and perhaps step out when they need to, because we know something has triggered them and it might be they go down to the pastoral area, put their plan in place, and talk to someone about perhaps what that trigger was because again, by identifying those triggers, we can amend and adjust and avoid for next time. But I think total acceptance is what we’re after, to be honest, Alis.

00:21:48.341 – Alis

Thank you. You’ve talked about the importance of pupil voice and hearing what the child needs. What about our youngest children, so reception and nursery-age children, and even year one, who can’t articulate in the way that older children can? What would you suggest teachers do there to try and work out ways to support the child?

00:22:12.831 – Lucy

I would say, and quite often in those early years, we haven’t got a diagnosis yet because the pathways take so long but it’s that thing that if it looks like a duck and walks like a duck, it’s a duck, isn’t it? I think if tics are there, it doesn’t really matter if there’s a diagnosis there or not. You’re not going to do a child any harm by assuming something’s a tick and putting these strategies into place. We’d rather them assume than get it wrong. But for those very early-years children and young children that haven’t got those set of skills to explain, and they won’t have a diagnosis, possibly, and they don’t know why they’re ticking. I would, as I said, again, just assume that with parent permission, start that process. We do have a lovely social story for really young children to learn about tics and what they are. It’s editable and a really nice editable resource to work on one-to-one and perhaps share with a class. Again, it’s about educating, isn’t it, where possible?

00:23:10.561 – Alis

Thank you. What could a school do to support a family? What would you be hoping they’re putting in place for the family?

00:23:22.301 – Lucy

I hope for the family, they would start some kind of referral if possible. We have early help referrals as well, don’t we, to parts of the social services. It’s a really tricky one because there’s not a lot of knowledge out there by many services, to be honest. But again, signposts into the charity. I think getting a hold of us, me in my team of education, because it doesn’t cost anything to have a call with us, with a few members of staff, a teaching staff or the senior leadership team to discuss a case with the child and we hopefully

will have the answers for them, you know, we can offer that advice and support. Our training is, well, there’s two routes to training; there’s a free option, which is an e-Learning module, CPD accredited. It doesn’t take long and quite often that’s quite nice to put on a school portal for new teachers to have a look at and for their CPD. Then obviously, we have a training option where it’s a paid option for in-set training or staff meetings, where they would get myself over teams talking about Tourette’s and other tic conditions and the barriers to learning, the co-occurring conditions, lots of strategies to put in place. We have that time at the end for question-answer time for specific cases. As I said, apart from the paid option, there’s no charge for any of our services, really. Encouraging the family and the school to get in touch and see how we can best support them.

00:24:50.181 – Alis

That’s really helpful. Thank you. We’ll put a link in the show notes so that people can find you nice and easily. You’ve given lots of really good advice and information to teachers and anyone working in schools, really. Is there one main thing that you’d want a teacher to take away from this conversation today?

00:25:14.471 – Lucy

I think just educate. Educate yourselves, learn about that child, get to know them, learn about their condition, because that’s the only way we’re going to learn how to best support them. We know this is a complex, challenging condition. We’re always going to get it right. It’s going to be two steps forward and ten steps back and when we get it wrong, we’re going to talk to the child because we don’t expect that to be right every time. But it’s learning. In teaching, it’s always learning, isn’t it? Learning about new things that are coming about and I think the only way to help a child is to learn about that condition as much as we can.

00:25:49.961 – Alis

That’s brilliant. That’s really sound advice. Thank you so much for your time today, Lucy.

00:25:54.571 – Lucy

No worries, Alis. My pleasure.

00:25:56.931 – Alis

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