We are the Association for Child and Adolescent Mental Health, or ACAMH for short. And this is ACAMH learn. Be aware that part of Tourette syndrome may include the involuntary utterance of taboo words and phrases. [MUSIC PLAYING] Seeking autonomy and social connection, risk taking and identity making. The brain in adolescence is unique. It's primed to absorb and learn from the environment, and that means the teenage years are a chance to improve a young person's trajectory. This new series of Inside the Teen Brain explores how neuroscience can inform our understanding of young people's home, school, college, and life experiences. In conversation with a young person with lived experience, we answer three big questions-- what's the background, so what, and now what. I'm Dr. Jane Gilmour and this episode is called Diagnosed, the Teenage Brain Experience. Well, now our first question asks what's the background. According to Scott Fitzgerald, the test of intelligence is the ability to hold two opposed ideas at the same time. So I can only imagine he would have immensely appreciated Conner's influential review, which considers the duality of diagnosis. A diagnosis can validate and indicate treatment, or it can stigmatise and dominate development. Of particular importance to the sensitive teenage brain is a social consequence of diagnosis. Having a name for it offers connection and a supportive network, but it can also isolate a young person if their condition has negative connotations. One of the challenges in this literature is that mental health conditions are often considered a homogeneous group. And yet we know that some conditions are less stigmatising than others and some are considered more acceptable, let's say, for boys than for girls. Adolescents' malleable social identity is shaped during the teenage years by cultural and small group perceptions. A so-called social laboratory. And so the reputation of a particular diagnosis, however arbitrary, will impact young people. A related theme is self-concept. From Erikson's classic theory in the '60s to recent imaging data, we know that the teenage brain is motivated to reflect on itself. The influence of a preexisting diagnosis may take on new meaning post puberty reconsidered in the flux of identity formation. The same might be said for a new diagnosis in the teenage years given that about 75% of mental health conditions will emerge in adolescence. Any change in identity for adolescence is a vulnerable time. And data show this is particularly true in the young teenage years. A young person may vacillate between total rejection of a diagnosis or allow it to dominate their narrative. And these quite extreme positions may exist in the same person, but form part of a normal developmental process towards a well-integrated self. However, data show a minority of young people get stuck and their development is restricted by a given label. Singh argues that the best scenario is one where young people apply their diagnosis, actively expanding or contracting it to fill the need of each situation. And in our own qualitative study, one young person commented that there's no requirement to share a diagnosis with anyone. It might just be for you. Wise words indeed. As stigma drains from many, but certainly not all diagnoses. Issues of self-diagnosis become more prevalent and with it, an emerging literature. The Youth Endowment Fund described 25% of young people using a chatbot for mental health advice, including self-diagnosis. Intriguing data from Harare's study, for example, indicate that self-diagnosis and self-esteem may be linked. An interesting area for future studies. In contrast, we have extensive data exploring the effect of engaging young people with our clinical and academic activity. Engagement improves experience on the waiting list, assessments, services, and the quality of our research. For example, Ford's lab recently co-developed a novel toolkit with young people and for young people waiting for an ADHD assessment. Jaeger's review, among many others, indicate that consulting young people about delivery improves outcome. So let's follow the data and consult. So now I have a brilliant teenage brain cued up to help us answer our next big question-- so what? So what can we do? Well, I'm delighted to introduce Rayne Huggins, a student of special educational needs and disability studies. She has lived experience of Tourette syndrome and is an advocate for young people with this condition. She's also my co-author on a recent paper in the child and adolescent mental health journal called Narrative Matters, Young People With Lived Experience Discuss, I Swear. Welcome to our podcast, Rayne. Thank you. So can you describe a little bit about the diagnoses you've received? Yeah, so back in 2023 I think it was, or 2022, I got diagnosed with threat syndrome when I was just about to turn 17. It was a very lengthy process for me. But it really like having the diagnosis itself really, really helped me in terms of understanding me and helped me find a community where other people understood what it was like to live with Tourette's. So for you, I mean, this is-- and I'm going to unpack a lot because you said lots of things there that I think I want to look into within a bit more detail. First of all, you talked about it being a lengthy process. Can you talk about the beginnings? And you might not be able to remember some of this because in some instances, this process lasts for years, doesn't it? Yeah, so my mum first noticed my tics when I was about seven. I'd like roll my lip and I'd tense my knees, but it kind of just stayed like that for a while. And we just thought it was like an anxious thing where I wasn't getting enough sleep. So we kind of left it until I was about 14, maybe 15. My head started jerking. And then a couple of months later, I was shouting, wow. And it kind of just escalated from there. And then within the space of about six months, it went from just very, very mild to having verbal tics on top of it quite complex verbal tics. Coprolalia and echolalia was like a big, big thing for me back when I was 15. And then I saw a neurologist when I was 16, I think I was. Hey. And he thought I had Tourette syndrome, but he wanted to prolong the process just to make sure that it was definitely that was going on. So that's when, when I was about 17, I got my final diagnosis. And yeah, that's pretty much-- so probably about 10 years it took in total. Yeah, I mean, that's a long period of a young life, isn't it? As a proportion, it's a lot of years. Do you think, given that you got your diagnosis at mid-adolescence, do you think-- and you touched on this a little bit-- do you think it helped you or hindered you when you were kind of figuring out who you were? I think I didn't really notice my tics when I was younger because just as a kid, that's not really what you notice. But as I got older, I noticed myself doing these things that other people wouldn't do. And then it just kind of made-- it didn't made me feel necessarily alone, but it just kind of made me be like, oh, I don't really know what's going on, until it kind of got to the point of no return where it was really quite severe. It was for a while. So I think during the period of time between when I was 15 and 17, 100% because from an outsider looking in, it kind of looked like it came out of nowhere. I'd been off school for three weeks, then all of a sudden, I'd come back with basic with just smacking my lips and no one really knew what was going on. And I kind of got a little bit made fun of for it. After the diagnosis, kind of just it switched something in my head where it was just like, it is what it is, there's no cure, unfortunately, but may as well make the most of it and spread awareness and advocate for young people like me, because I didn't have an advocate when I was younger. So I want to be that person for other young people. And can you tell me-- and you might not be able to remember this specifically-- but can you tell me the sense of your experience when you got the diagnosis, when you actually got the information from the clinician, do you remember what words were said, how it was delivered, and how it made you feel? Yeah, it was kind of said very, very calmly. No one really made a big deal out of it. Hey, hey, hey. It was kind of just like a-- so it's Tourette syndrome basically is what my mum said to him. And he was like, yeah, that's it. But in a way, it kind of made me feel a little bit more-- it made me feel relieved because I was like, OK, finally, it's not the most sinister going on. It's Tourette's. That's what it is. But then again, I didn't really feel like I had anyone to talk to about it. I am quite lucky that my best friend also has Tourette's as well. So we can bond on that kind of thing. But as a whole, no one in my family has it. It just kind of felt a bit isolating. And I was like, it kind of made me feel like, oh my God, this is forever, this is for life, there's nothing I can do about it kind of thing. So there's lots in that. Now one thing I'm picking up is that the way the clinician spoke to you about saying yes, it's Tourette's, was actually the tone of their voice was quite important there. And I think that's a really smart thing to notice and to think about it in retrospect, because the nonverbal signals, if you like, that we are given, particularly for young people, we know that young people are really cued into those signals much more than any other age, make a difference. And so that calmness conveyed to you, it's OK. And as you were saying, you were thinking about all sorts of other scenarios that might have been more anxiety provoking and so on. So it contained it, if you like. It contained the anxiety. But you also said you were left somewhat thinking, well, what now. You were directed to being online. Now, we know that once you get a big piece of information, particularly at that stage in life, there's a kind of process of thinking about it, understanding it, and going through a period of time where you have to consider in different ways. So going online, yes, as long as you're directed to some good quality resources, is one part of it. But what would you have needed? What would you have been looking for during that process of getting your mind around what that meant for you? Definitely an in-person support group. I think meeting other people with the same condition as you and understanding the struggles that you go through, people that you can physically connect with in person is so important because I had to find my own support group. There wasn't anything under any medical groups. It was more like a local area kind of thing. And I was very, very lucky that there was one in my local area. And I made so many brilliant connections with people there. And especially, it was really helpful for my mum and dad as well, finding those connections with other parents that understood what it was like to go through it, and me finding other people my age going through the exact same thing. Fuck, fuck, fuck you. It just felt like such a comforting environment to be in. And it kind of gave me the sense of, OK, I'm not alone. It's not just me. I've got all these other people-- fuck you-- here with me that understand me. And it was just such a lovely place to be able to go because everyone just gets it. And you don't have to hold your tics in or there's no one looking at you weird, being like, why are you doing that. Fuck you. Just everyone just got it So what you're describing, there is not even information sharing or facts. It's an experience and atmosphere of a place to be where somebody gets you. And I love that expression just where somebody gets you. And you also mentioned that your parents really benefited from that as well. So that idea, that connection with other families meant that they were more able to support you as well because this is a family experience, particularly at that younger end of the teenage years. I mean, obviously where you are now, less so. But you're always part of a family. So the idea of in-person, you said that twice. Do you think being in the room together matters most? And if so, why is that true for you? In my personal experience, yes. You can go on TikTok or Instagram and see other people making content and you do feel less alone. You do. But I feel like having that physical connection with people and being able to talk is such an important part of journey to accepting the diagnosis if that's what you've got because you're very, very free to be yourself, ask questions, and share your own experiences if you're comfortable enough to do that. I just think it's great. I much prefer in person. Well, hey. And I think that's important. So we could say, well, you can have online support groups and maybe that's better than none. But for you being in the room in real life with other human beings was a part of that connection, particularly because you talked about the atmosphere, which is harder to feel online. I mean, sometimes it's possible, but it's harder to get that. I'm going to ask you a difficult question here. So I want to ask you this question, but I suspect you'll have something interesting to say. How do you think society views Tourette syndrome? To put it very bluntly, as a swearing disease. I've had many, many people say, oh, that's the swearing disease. And that's no fault of the public's own in my personal opinion. In my opinion, it's due to a lot of media coverage of Tourette's. When it comes to media coverage, you very rarely see people with Tourette's that don't have coprolalia. It's very common, from my own experience anyway, from things that I've seen. It's a lot of coprolalia and copropraxia that are showcased. So I know I've had plenty of times like one specific instance where I went into a supermarket and I was whistling. And someone said, what's that noise. So my mum said, it's my daughter, she has Tourette's. She hasn't got Tourette's. She's not swearing. And it's that kind of thing where that's kind of, in my opinion, how it's viewed and kind of a little bit of, oh, we must be thinking what we're thinking. And that is something that I really want to make extremely clear to everybody is that it's just as much as a surprise to us as it is to everybody else. If we take a word or a phrase, we've got no idea what's going to happen. So yeah. Fuck you. And that's, as you say, I mean, and you are being very emotionally mature in that response that your experience in the supermarket where somebody was giving you advice about your own experience. And managing that can be a challenge. I think you managed it exceptionally well. And well done to you. But that doesn't mean to say it was any easier. And as you say, we've also got, in the media, I think even as we're recording this week, there is a news item about a young boy who shouted bomb before he got onto the plane to go on holiday. Now, of course, that word may be the very word that is so socially disadvantageous, if you like, to the young person. We might predict he could shout something like that, but he may not be able to predict that specific word. And of course, in this instance, this young person was not allowed to go on the plane and the whole family had to leave the airport and their holiday was delayed. I understand they're there now, but that's a great example of why education to everybody in society is absolutely required for our benefit, but also for every young person because it affects our quality of life. Yeah, definitely, definitely. Can you tell me a little bit about why a diagnosis matters to you? Now we've talked at the beginning, or at least I touched on the beginning some of the things that are positive, some of the things that might be challenging. Why does it matter to you? And overall, what's your experience of having a diagnosis? I think diagnosis is quite a personal experience. No one is going to have the same experience when it comes to diagnosis. And in my opinion, for me personally, it's important because it gives me that relief of, OK, I know what's going on, and it enables you to find a community of people, like I was saying before, who get it and who understand. And I think that is such an important thing. I 100% understand why some people may not go forward with a diagnosis. 100% understand that. But I do think diagnosis is an important element in the road to self acceptance, if that makes sense. Hey. So, yeah. And that's really interesting, the idea that there's an element of the road to self-acceptance. That's a beautifully described phrase because it's not everything about you. It doesn't dominate you is sort of touching on earlier, but it's part of your self-understanding. And you said, well, I recognise some people don't want to go forward to diagnosis. What do you think is underlying those young people's thinking process? Because I know you talked to lots of young people who've got a variety of experiences. There's one specific instance of me communicating with another person that stuck out for me and they explained to me that it's kind of the idea of it feeling real. So for that person specifically, it was more of if they get that diagnosis, then it becomes real, if that makes sense. More of like if I ignore it, it'll go away kind of thing. That's what they were saying to me. If they ignore it, then it's not a problem. And while having Tourette's is not a problem, for that person, they were explaining to me, due to a lot of ableism and outside and in the media, it just felt way too real for them. And I wonder, for that young person, they might be on, as you talked about, a journey. They might be going through a process where, in time, when they're ready, when it's right for them, they may want to explore it as an element of themselves, as you said. So I come from a professional background where, as a psychologist, I talk about and recognise diagnostic categories, if you like, but also understand that these are very much a part of the puzzle and not the whole picture. But Rayne, you talked a little bit earlier about ableism. Can you explain a little bit more about what you mean when you talk about that? Just people kind of just not being very uneducated and doing it more in a prejudiced way. Lack of understanding is different than refusing to understand, if that makes sense. I know I've had experiences where someone has said, but you've not got Tourette's because you're not swearing. And I've gone, no, actually, that's quite a rare symptom. Majority of people with Tourette's don't have coprolalia. And they'll go, oh, OK. And that's their education for the day. But I've had other people where they've gone, no, you can't have Tourette's. You don't have it. Girls don't have it, or it's a childhood disorder, or things like that when that's where the line goes towards ableism, in my opinion, where it's done in a refusal to understand because not everybody's going to know everything. And it's unrealistic to expect people to know that. But after someone with a condition has said, actually, that's wrong, and then it kind of goes towards more of a disbelief, in my opinion, that's when ableism comes more into the picture. And having that framework, because you've got access to this framework as an educated young person, I think that is an important part of making sense of an experience, if you like. And I think that doesn't diminish the emotional content, but it does allow you to understand other people's difficulty of your experience. And we talked about it in the paper that I mentioned that the social model of disability. So that proposes-- and you know this very well, I know. But just for the purposes of our audience, that an impairment doesn't cause a disability, but it's the cultural attitudes that create the disadvantage. And one of the things we wrote about in our paper was finding a sweet spot, if you like, the intersection between that social model of disability and the various powerful strengths of a diagnosis that we were talking about here in a medical model. I mean, and we talked about that in general as something that the community who have tics might want to consider. Do you think that's true for you personally or do you feel that you are on one side or another or would you like to have aspects of both? I think having aspects of both are very, very important. I think if you, say for example, go towards the social model 100%, critiques of that can be ignoring the struggles of the actual condition itself. Tics that may hit yourself or you might scratch yourself or hurt yourself kind of ignores that side of it. But if you go straight to the medical model, that also then ignores societal attitudes towards Tourette's and other conditions. So I think having something in the middle is so important in order for people to understand there are a lot of societal stereotypes and stigmas around Tourette's. And if those things can be eliminated, that's perfect. But you also have to have the medical model where curing and treating is not the only answer towards Tourette's. Self-acceptance and being on a journey of that kind of thing is also extremely important at the same time. So I think definitely straight in the middle is like where it would be perfectly, in my opinion. So here's what you have to do-- you need to write a new framework that takes the best of both and delivers it because-- and I think the way you talk, interestingly, is exactly that, because you've got a very pragmatic and straightforward way of understanding the world. And also, look, sometimes tics will be bothersome, they'll be tiring, they'll be painful. And it is OK not to want those tics around and be a proud member of society who happens to have tics. Those two things can exist. And I think when you describe those, as I say, you need to take this forward. After graduation, this is first on your list. So Rayne, one of the things we know is that when it comes to Tourette syndrome, there are often questions about functional tics. And these are movements and sounds that look very similar to tics, but the natural history and the treatment is different. Now, I know you speak to a lot of young people about their experiences, or it may be a personal experience, but can you say a little bit about what the process might be in pulling apart a functional tic and a Tourette associated tic, if you like, because that's very often part of the diagnostic process? Yeah, so I have experience of both functional and Tourette's. So back when I was about 15, 16, I had-- so with Tourette's, there's a predominant urge before you tic. So for me, that personally kind of feels like a shiver going down your spine. But wherever that tic is, that's where it'll be in my body. So I get it in my fingers, in my eyes, in my mouth. But I went through a period of time where I'd say quite very complex tics. And they wouldn't have a preliminary urge behind them. So the neurologist said that it would be a dual diagnosis of basically functional and Tourette's. While I don't have functional tics anymore, there are multiple other people that I have spoken to that kind of all describe the same thing where there's not really much of tingly feeling behind it. It feels more of like a pull or you're a puppet where people will pull your hand up and it would make your hand go. That's how it's been explained to me. I do think everyone's experience is slightly different. So I don't want to say that's set in stone. But from certain people I've spoken to and from my own experience myself-- fuck you-- that's kind of what I think. I think the urge is slightly different. And I know for a fact for me, I couldn't hold the functional ones in. They would just come out because they had no feeling behind them. So I couldn't hold them in. But with the Tourette's tics, I can hold them in to a certain degree. Rayne, you are such a brilliant historian. So you're talking about those two groups of tics with such insight. I wish I could have you in my consulting room because you talk about it in such a clear way that those particularly much younger children-- so I'm talking about before the teenage years who sometimes struggle to articulate a tic, whether it's functional or not, in terms of the premonitory urge, but also as you get into the teenage years. And more young people with Tourette's tics are able to talk about the promontory. But not everyone, in my experience can make that differentiation so clearly. A good example of consulting with young people. Let's think about the diagnostic process, because this is really what we're talking about in this episode. How can we improve it? Now you might want to think about the setting, the interview questions, the professionals involved. What would you do if you could improve the diagnostic process? What would you do in order to make it a better experience as somebody who's gone through that? My experience kind of heavily involves quite a lot of medical misogyny. At first, when I was seen, they wouldn't even entertain the idea of Tourettes because I was a teenage girl. And because when I was 17, it was around 2021, 2022, that was obviously when there was a big influx in functional tics. So I remember one neurologist that I saw wouldn't even let me get a word in. He just saw teenage girl, tics, must be functional. Didn't ask me anything. And when I tried to tell him, I've got a premonitory urge, it's different, I can hold my tics in, I know when they're going to happen, he wrote in her summary letter just completely changed everything that I've said. Said that I couldn't hold them in, said that I didn't have a premonitory urge and manipulated what I'd said to fit his own narrative. And that's obviously when we went for a second opinion. And the next doctor was absolutely brilliant. I can't fault him. He was absolutely amazing. But I do think there needs to be a change in the medical field by just because someone may present with what seemingly the most common sense diagnosis. There needs to be that look deeper. I can't remember what the saying is. It's like when you see hoof prints, don't think horses, think zebras, something like that. And I think that needs to be such a-- it needs to be remembered really, really heavily because for people like me, say for example, my treatment could have been different, my options could have been different, and I wouldn't have needed to go and see a second doctor. So I think just changing the views of what's typical and what isn't, because there's no such thing as a typical person in my opinion. Everyone is unique. So having that idea is so, so important to avoid that kind of thing, if that makes sense. That makes perfect sense because I think what you're describing there is not being led by the group data. So for example, in that instance, we know that if tics first appear in the late teenage years and a young girl is affected by tics for the first time in late teenage years, functional symptoms may be a hypothesis. But what you're saying there is every young person is an individual experience. And what we need from our professionals is a curiosity about what's true for each young person. So yes, we need to know about the data. Yes, we need to know about the group data, but we need to think about individual differences. And I think that experience certainly highlights that. And I'm glad that you found a positive experience with your second doctor. Thank you. Rayne, we have covered a lot of ground and you have given us some really thought provoking ideas. So I want to come to our final question and ask you now what. So what's your takeaway from a young person's experience of diagnosis? That you're not alone. There are so, so many people going through the exact same thing. And I know it's so easy to feel alone because it does feel like such an isolating thing, especially because I know in my experience, I felt like I stuck out like a sore thumb, shouting quite a lot and making weird movements. But there are also so many people going through the same thing as you, and it's just finding the right community and finding what works for you. It's, in my opinion, the best course of action if it is possible to find a support group to go to because they're very eye opening. And it's so comforting knowing that-- I know I keep repeating myself, but it's so comforting knowing that you're not alone and that it's normal to be. It is normal. And finally, what would you want mental health professionals involved in diagnosis to know? That we're all different. We're all unique. We're all our own individual person. My tics aren't going to be the same as somebody else's. My symptoms aren't going to be the same as another person's. So I think it's very, very important to remember that we're all our own individual case. While it is important to, like you said before, follow data and stuff like that, I do think it's also important to have that curiosity of this is an individual person, it's an individual case. OK. Well, Rayne, what a privilege to hear your thoughts. And I know that this will be highly appreciated by our audience. So many thanks for taking the time to join us today. Thank you so much. [MUSIC PLAYING]