Tourette’s, Inclusion, And The Power Of Lived Experience

A life can change with a single word, but only if that word is followed by community. Paul Stevenson joins us to share how late diagnoses of Tourette’s, ADHD, and autism reframed decades of blame and opened a path to strengths, purpose, and international advocacy. We dig into the human story behind the UK box office hit “I Swear,” a film built with radical authenticity: 30 cast members with Tourette’s, a lead who studied the inner experience as much as the outward tics, and a creative team that checked every detail with lived voices.

Paul explains why coprolalia is only one part of Tourette’s and often not the most disabling, and he lays out the real daily costs people don’t see—joint injuries, sleepless nights, and the exhausting pressure of suppression. He draws a clear line between masking and suppression, then shows how both drain energy, strain mental health, and make learning and work harder than they need to be. The fix is simpler than most accessibility plans: change the culture. Replace shushing with curiosity, pair diagnosis with peer support, and adopt strength‑led adjustments that cost nothing and unlock performance.

We also confront a systemic gap that steals childhood learning: years-long delays for assessment and specialist care. Paul argues for early, strength‑based intervention, practical accommodations in the classroom, and managers who start with “What helps you work best?” His approach is open, humble, and deeply pragmatic—apologizing when a tic lands hard, inviting questions to replace fear with understanding, and reminding us that families live this too. By the end, Paul’s journey from isolation to ambassador shows what happens when people are seen for who they are and supported for what they can do.

If this conversation moved you, share it with a friend, subscribe for more accessible leadership stories, and leave a review to help others find the show. Got a question about inclusion and neurodiversity? Drop us a note and join the conversation.

Chapters

• 0:00 Welcome Back And Paul’s Story
• 2:46 Late Diagnoses And Finding Strengths
• 4:29 Inside “I Swear” And Authentic Casting
• 9:16 Why Diagnosis Must Connect To Community
• 13:42 Inclusion Over Suppression In Schools
• 18:04 Coprolalia Myths And Real Risks
• 22:00 Openness, Questions, And Work Culture
• 24:47 Rest, Self‑Awareness, And Family Support

Transcript

Neil Milliken: 0:00

Hello and welcome to Access Chat. I am really excited that we have a returning guest today with us, Paul Stevenson. Paul, welcome back to AXSChat. Paul, for those of you that haven't watched through our 500 previous episodes, Paul is an an ambassador for Genius Within and also an advocate for Tourette's awareness. Tourette's is in the news in the UK because of a film that's out at the moment called I Swear, which we're going to talk about a little bit in a moment. So, Paul, it's fantastic to have you back. I'm really, really, you know, super pleased to have you back here because we really had a great conversation last time. But please tell us a little bit more about you for those that like didn't watch the previous time.

Paul Stevenson: 0:51

So uh yeah, I think I think we've been going on for six years since I was on on the podcast with you, and time flies. So for those of you that don't know me, I'm Paul Stevenson. I'm a 62-year-old father of five. I I've got Tourette's syndrome, ADHD, I'm autistic. I didn't get a diagnosis of Tourette syndrome till I was 46, and my ADHD diagnosis was 60, same with the diagnosis for autism, so I was 60-year-old. Uh it's been a bit of a baptism of fire. I was absolutely stifled and embarrassed by the condition when it started through some PTSD. Uh, I've come to the conclusion now that I've had obviously lifelong conditions, I've lived with these conditions all my life, just not known, not been aware. I had a very chaotic lifestyle uh and not a very good education. But after being diagnosed and after discovering my strengths, I knew what my challenges were every single day, faced them every day, but I didn't know what my strengths were. And thanks to the lovely Nancy Doyle, I discovered my strengths, and I've just gone from strength to strength since then. So I am I now work for Genius, as Neil said, I'm an ambassador, and it's a lived experienced one. So and the best thing about being a lived experienced ambassador is that we can go hand in hand with the professionals and we'll get the point across, get understanding across and inclusion across.

Neil Milliken: 2:10

So thank you. Yeah. Thank you, Paul. And um, you know, we we talked before about some of the challenges and some of the things that not just the um the sort of obvious ones, because a lot of people associate Tourette's with Coppravaria, which is the the swearing, and obviously the movie that's out at the moment is called I Swear, but there's lots of other things as well which sort of impacted you physically, which we which we knew about, which I didn't know about rather. So but let's not go back on that. Let's uh I mean let's talk a little bit about the movie which you star in, maybe not the starring role, but you're you're in there. So yeah, tell us a bit about a movie.

Paul Stevenson: 2:53

Yeah, so uh three years ago, uh well the movie's about John Davidson. So when I first got diagnosed, I was very isolated. And one of the things I found out right at the beginning was to I needed to know other people who live with this condition. They had all the better than a prescription from a doctor, they had all the strategies, the techniques to get along in life. So I met John. We'd grown up in the same periods. I were born in the 60s, he was born in the 70s, but we both lived our lives with Tourette syndrome. John diagnosed me, undiagnosed. So we got along pretty good. And I went from strength to strength working with John. He did, he mentored me a lot, he got me into public speaking and he got me into the advocacy work to help others because as adults living with this condition, we're in a position to articulate to uh professionals, whereas a lot of young people they they can't do or they don't get heard. So John ended up getting an MBE, and we put him, we nominated him for an MBE. So our late Queen, Queen Elizabeth, it was one of the uh last services she did, and John got his MBE. And so three years ago, a gentleman called Kirk Jones, director of Nanny McPhee movies and other movies, approached John and said, Can I write your life story? Said, Yeah, can I make a movie about your life story? And John said, Yeah. So three years on from then, the movie's been created. It actually the speed, we we thought it was going to be a six-year project, it you know, you know, from start to finish, but it didn't, it just went so smoothly. So it hit the uh it hit the cinemas uh maybe a month ago, and it's been box office number one, and I I've I've never experienced anything in my life. I mean it was good, it's it wasn't on my bucket list to be in a movie, but I've I've just added it and it's already ticked off. So yeah, the the actors are absolutely fantastic. It was very inclusive right from Word Go. So 30 of the cast have Tourette syndrome. John was an executive producer, everything went back and was analysed. And is this okay if we put this tick in, if we put that tick in? The lead actor Robert Arameo spent three months with John and interviewed a few of us also, what we knew about John. And he wanted it to the movie, he wanted to portray it not just about the ticks, but what goes on behind the scenes, the internal thoughts, the O C D, you know, the co-occurring conditions. And to me, that meant I thought this is gonna be a success because this guy's not just gonna go off and go expletive, cursed word here, cursed word there. He's he's gonna play the character. So right from word go, Robert was a method actor and he got into character and he stayed in character from the start until the movie finished. And I've heard that he even struggled for the ticks to disappear right at the end because it got so commonplace with him.

Debra Ruh: 5:34

That is so interesting that there are 30 people with threats on the scene too. And doing because there's I have never made a movie myself, but I've just my husband was an extra, so that's the limit of my knowledge there. But I am curious about your diagnosis, and I know this ties into the movie too, because I know um I got diagnosed with ha being neurodiverse in my mid-50s, and I remember when I was diagnosed, Neil and and Tony were making fun of me and saying, Well, of course we knew. I I don't know why I'm a disruptive person. But what I'm curious with is the world diagnosed you. So you got diagnosed, like, all right, cool. So, Paul, you have these diagnoses now, but you are already, this was already who Paul was. This was Paul for a long time. So I'm just wondering how the diagnosis supported you really understanding who you are. And also, Paul, there's so much we don't understand about Tourette's, which is why the movie is such a blessing. Doing it with the way that it's sensitive, maybe a little funny, but also helping us humans understand. Because you had said something that when you said it, it made total sense to me, but I hadn't thought about it before we went on air. And you had said so the worst thing somebody can do is say, Okay, Paul, don't do this. And immediately, which my brain works that way too. Please don't tell me not to do something because immediately my brain's gone just, but why not? But why couldn't I? My brain goes weird places when people tell me not to do something. And so I was just wondering if you could just talk a little bit about how being diagnosed did seem to lead to, and I'm putting words in your mouth, you finding your space, but I I'm putting words in your mouth, and I know that ties right to the movie too, but I was just wondering if, you know, you could explore that a little bit. Thank you.

Paul Stevenson: 7:28

I think right from the word go, obviously born with the conditions, and it's people's perception of who you are as an individual, the manifestations of your conditions are classed as behaviours and generally all bad. And so right from the word go, I was collecting labels, negative labels, naughty, disruptive, class clown, inherently evil, lazy, uh, because I didn't know anything about the conditions I had. I didn't even know I had to return. I had very maltics, you know. Uh I didn't have coprolalia at that stage. So I I started to own these labels, you know. I'd get I'd lose interest in a job after about 18 months and move on. Why are you moving on from job to job? Because I'm lazy. And, you know, when I was in work, I used to find the easiest way to accomplish a task. Why do I do that? Because I'm lazy. So you start to own these labels and you carry them burdens through your life. I would say the difference in getting a diagnosis is that what's the word uh that uh eureka moment that wow, this is what it is. You know, I'm not the bad person that I thought I was. I, you know, I have I've got a condition and it basically empowered me to educate myself and start to understand why my life had been like it was. So I, you know, I keep epiphany, is that the word, the right word? Um, you know, it would have big change in my life. But it's funny because the diagnosis, when it was given to me, it was given to me as this is what's wrong with you.

Debra Ruh: 8:55

Well, so it must be validating, maybe validating, because I'm like you. People were like I was always being told, hey, Deborah, if you say one more word in class, I was always in trouble talking. Surprise, surprise. You're right.

Paul Stevenson: 9:08

Yeah, so no, yeah, definitely validated it for me because then I'm I started to get something like be able to map my life back, be forgiving, be understanding of why I did certain things, and also to be able to find strategies. But this was a crazy thing, you know, and I was talking I was in Athens this year talking to uh a world conference with Tourette specialists from America all over the world. And I said, one thing where we go wrong when we're diagnosing people is we isolate them even more. So my diagnosis was you've got Tourette syndrome. This is the worst case I have ever seen in my life. Did you know it was a very rare condition? So I said, I've gone from being a victim to even more of a victim to being isolated. And I said, and what you should be seeing is right, this is quite a common condition. One in 100 people have this. There's lots of people around the world who have Tourette's to your degree. The best prescription I can give you is here's some phone numbers of Tourette's associations, get in touch, find support, and get a circle around you of supporters. And I said that to these these guys there, and and like, yeah, we we're guilty of that. And I put it across in a nice way, but this is the thing, we we don't want to make people more victims up on isolate more than they've already feel isolated. So but yeah, so finding out what was wrong with me. I would say this to Jack, who's CEO at Genius, and to Nancy. My diagnosis, I found out what was wrong with me. But I when I had a positive cognitive assessment, I found out what was right with me. I found out about my strengths, which was the biggest gift, the biggest boost that anybody could give. And I think I've just gone through I was part way through that journey last time I spoke to you and and been made aware of the strengths that I carry. So I always say now when I'm doing talk talks in public talks, is that we don't need reminding of our challenges. Yes, we do need support. We're not broken, we don't need fixing, but we appreciate strategies and support that you put in place for us. And that appreciation makes us work that a little bit harder and push forward and work to our strengths. So I'm all pro. It's funny because I were having a conversation recently about somebody saying, What superpowers do you have? And I said, Well, unfortunately, I don't mind people identifying the strengths of superpowers. I said, But my ADHD, my Tourette syndrome has a lifetime have got me in trouble. So I it's not it's not a superpower in that way. It's it's been very burdensome. But now I know my strengths. Yes, um, I work to them, and and it's worked out pretty good. I was thinking prior to coming on, somebody said, What's the what's the podcast about? And I said, Last time I came on here, I had hopes and aspirations. And I remember talking to all three of you saying, This is what I'd like to do, this is what I'd like to do, this is where my heart's leading me. Fortunately, I just can't really find a way to do it. And they said, So, how are you now? And I said, Well, to be truthful, I think we'd need maybe two hours to cover everything that I started doing with support. So uh yeah, I rem I remember that conversation well on our last podcast.

Neil Milliken: 12:01

That's great to hear, Antonio. I know you've got a question.

Antonio Vieira Santos: 12:04

Oh, uh if if you look back uh when you were a kid, do you feel that if you have been diagnosed much, much earlier in your life, would Paul as could have been a different child, d a different kid?

Paul Stevenson: 12:19

Uh I yeah, it's something that I ponder on, Antonio. I my honest answer in the generation I was born in, I would say it would have made a difference because I would have understood that I have Tourette syndrome, but as far as other people around me, education authorities, nobody knew very much about it. So John John he had that diagnosis as a child, but the persecution, the hassle, the bullying, he still experienced all that. But this generation now, this so we we deal what we do, we're in the business of trying to fix a lot of people who've been let down by the system, who've been broken by the system, not by the conditions, but by the system lack of understanding. Now, yes, we're gonna carry on doing that, we're gonna carry on supporting these people, but let's start going right back to the source of when our young people at the age of 12, 13, are struggling with the challenges. Let's show them, uh give them a strength-led education, show them what their strengths are, and set them on the right trajectory to success. Because we're not doing that at the moment, and people are still struggling, you know. So say, since John made the documentary, his first one in 1989, with 36 years on from then, still in the UK, there's no direct pathways for a diagnosis for Tourette syndrome. In the 15, 16 years I have lived with full-blown Tourette syndrome. I have not seen one Tourette specialist. I've seen people who have dealt with Tourette syndrome, but not someone who's been trained. So this is what we need to be doing now. Pushing, you know, we're in a situation where a teacher will spot ticks in a in a young person, woman dad will spot ticks. They'll go into a service that says we're not qualified to die, we'll send you back to the GP. The GP's saying, I'm sorry, I've not got the qualifications. And the problem that we've got, this is happening in a period of time most vital for education. You know, it's taking up to five years in some cases. Now that's that's an education gone. That is an education gone. You know, that that period of time you're never going to get back. So we need to be going right back to the start. We need to be identifying these neurological conditions and supporting our young people. Thank you.

Debra Ruh: 14:23

And Paul, is that one reason why y'all did this this movie? Because you're talking about the United States. You're talking about UK, we aren't able to diagnose. So people don't have a chance in you know, other countries. So is that one of the reasons why y'all created this um movie?

Paul Stevenson: 14:42

I think I know I know for John. John's just been a lifelong campaigner. I've joined along with John, and I'm the same. You know, this is I can see myself doing this. I don't want to retire. While I've still got a voice, while I can still make a difference, I'm going to carry on. And John's the same. And yeah, it was it was a very raw, very painful movie, a very, very painful story for John to go over and over again. And when you watch it, it it's not disturbing, but it's very emotional. And but what it does, it's humanised the condition. It's made people realize that we are just like everybody else. We have good days, we have bad days. But while we've got the good and bad days, we've also got this massive big burden of challenges that we that you might not be able to see. Uh, you know, like our working days don't start at nine o'clock on a Monday morning, they start maybe Saturday afternoon where we're thinking, oh, I've got to go to work Sunday when I've not been able to sleep, getting the same ground dog day, going over the same experiences. And this is because we're facing the same challenges. And there's one simple fix for that, and that's that's inclusion. You know, when we can get to the stage where I had a friend who were a wheelchair user, used to met a lot of noise coming into the workspace, but knew it was Margaret. Hey Margaret, you're okay. I I've walked into workspaces and I've been ticking, and people have looked round, they've laughed, you know, put their head down. And I I just want equality between all disabilities where people go, hey Margaret, hey Paul, you're alright. Uh not see us as disturbance, not see us as as bad people. So one of my presentations in the workplace and also in colleges and universities to teachers is what is the big issue? And they said it's actually it's very disturbing, disruptive. And I went, Yeah, I get I do get you. But as I'm talking to them, I move my chair and I put my coffee cup down, bang, and nobody bats an eyelid. And then I apologize and say, I'm sorry about doing that. They went, Oh, it's okay. And I went, why is it okay? And they went, we don't know. And I said, Because you know the source of it. There's no malice, no intent. Now, once you get like that with ticks, the kids aren't there to disrupt the class. They don't want to cause you harm, they don't want to upset you. So once you get like that, then it's no longer a disturbance. It's just a a noise that's going on with all the other noises, like the projector above my head, like the classroom door closing, like the young lady over there sneezing. So yeah. And it's such a complex condition, but it doesn't need complex problem-solving solutions, is it very fundamental solutions to you know to deal with it?

Debra Ruh: 17:08

Paul, can I ask you another question and then I'll turn it over to Neil or Antonio? But you said something several times on the um on the show today that I just don't know, I'm not sure if I totally agree with you. And you had made a comment that as you're not one of the experts, you're you're just there with lived experiences talking to the other experts. And then you also said that nobody's really an expert on it. I just want to say I believe that you are an expert and professional on it, and that there is such value in the lived experiences and learning from the actual people that have the experiences and they have lived experiences. So I just wanted to throw that to you saying, I do think you're a professional and that you belong on that stage more than anybody else. And anybody else that says you're a professional, but they're not living into listening to people that have the lived experiences.

Paul Stevenson: 18:01

Uh no, yeah. I mean, we do we do go hand in hand. And it's me just being modest. I'd, you know, I get talking sometimes and I'm thinking, oh, I'm I'm blowing my own trumpets a bit here. Uh I'd and a bit of imposter syndrome still exists even after all these years. Uh especially when I'm on stage with uh, you know, some professionals. I'm like, my ideas, what am I doing on here? Is this really happening? But yeah, I feel as a lived experience we could we I can talk about it fundamentally, you know. So what does it feel like uh to suppress? So the question gets asked in classroom. We know you can suppress. Why aren't you suppressing? But we're not the reason we're not suppressing is because the pressure that builds up inside. I started this day with social anxiety, the pressure's getting greater and greater in class, the pressure for me not to tick is getting greater, and when I get warm tonight, I'm gonna have a massive big meltdown, I'm gonna be fatigued, and I'm gonna be fit for nothing. You know, I remember I've been doing doing a lot of research with Nottingham University, and somebody spoke about suppression, and one of the doctors who was there said to me, Listen, we're talking about suppression like it's an option. And he said, Paul, tell us about suppression. Now, if I hadn't been there, it would have still been there as an option, you know, and it's like shaking that I know it's a metaphor that people use, shaking that bottle of soda up and just taking the top off right away, it's gonna explode everywhere. And it's like that with you know, that that pressure's building up, pressure's building up, and it's got to be released. But it's got to be my choice, and this is where we go wrong. You know, I feel that people try and they want us to shut up, they want us to be quiet. So there's no specific medication for this condition. The medications that are used are usually dopamine suppressants, uh, and they make us lethargic, quiet us down, they block our creativity, silence our ticks a little bit, but what we really need, we we need empowering, you know, and it's like what works for you in class, what works for you in the workspace. And I think if one of your line managers or the boss of the company actually comes up to you and says that, you'll think, do you know something? I'm appreciated, I'm acknowledged, you know. And that I'm that's that's that's the way forward to empower individuals, not to order them about, well, hey, get a bit bulky.

Neil Milliken: 20:12

No, no, no, it's it's perfectly okay. And I think that you've raised some really im important points. You talk about suppression, other neurodivergent conditions talk about masking. And and and they're they're slightly different things, you know, because masking is you you're behaving in a slightly different way, whereas that you know you're really having to s really fight physical the physicality of your condition, but the sort of the internal impact is is similar in terms of psychologically and so on. And and so I think that to draw this to the other point that you made about the need for inclusion is actually, you know, this is one of the easiest conditions to accommodate, right, in terms of accessibility, because all of the changes that need to be made are attitudinal, right? It's just accepting people for who they are, right? We don't have to put ramps in, we don't have to put in technology. You just have to take people as you find them, right? That's not so hard to do. Very true.

Paul Stevenson: 21:15

Yeah, there's no so what are the costings? There's no costing other than consideration and inclusion. Uh yeah, and I think I own I own this condition. You know, I understand sometimes I shout stuff out that's alarming. You know, I'm getting on an aeroplane and shouting I've got a bomb, or you know, like I mentioned before, the very auto-suggestible. But I've got coprolalia, which is only a small percentage of the community. I I dare say maybe about 10% to 30. You know, I I would say that as a guesstimate, my own opinion. Copperalia is just another tick, like sniffing's a tick. What's what's what what tick have I got the biggest problem with? I bet it's coprolalia pole, isn't it? And I'm like, well, it gets me into a lot of bother, but I said my worst tick's when my knees dislocate, you know, and I fall to the floor. I'm 62 year old and it's I don't roll like I used to roll when I was younger. So let's talk to the individual, let's find out what what's bothering them, not what's bothering us as a colleague.

Neil Milliken: 22:08

Yeah.

Paul Stevenson: 22:08

You know, what you're struggling with. Can I support you in any way? And it's it's funny because that that's that's the ethos at genius, and it's funny because there is there isn't any issues. I can go into the workplace and not have to worry that I might upset somebody and not have to worry that I'm gonna offend somebody or startle somebody. And that's because I'm I'm confident I wear this clothing well, the Tourette's clothing, and I own it as well. You know, if I if I upset you, if I shouted something at you know, like Specky or whatever, uh, I can then say to you, listen, that ratique, I'm really sorry about that. Well, you don't have to apologise, Paul. We know you've got Tourette. So I went, no, I'm apologising because I acknowledge the fact that I could be offensive. So please give me that bit of space to do that. And and I think it it's great. And the other the other thing that I've got as well is feel free to ask me any questions you want, because ignorance is the biggest barrier. And if people don't know, they don't know. It's not them being nasty, uh, it's not them being cruel, it's just the lack of knowledge. So if you don't ask questions, you make assumptions. So I'm like, if you know, if it's a silly question, it doesn't matter. You know, if it's on your mind, let's discuss it, let's get let's get it done with. And I think being that open, you endear people to you as well. I don't know, we've we've got a great team anyway, uh, but I'm biased about that.

Antonio Vieira Santos: 23:25

Well uh I would like you to to reflect with us on on on the need of taking care of yourself and resting and and and how important that is uh in your in your life and then in the way how you have in your life, in in your family, and to have a good for your your family members to know you in order to respect your timings.

Paul Stevenson: 23:47

Yeah, that self-awareness is so important. Uh because we know if we use our phone till the batteries on one bar, it's gonna take it's not gonna work efficiently. It's got to be charged up for quite a long period of time. And it's the same with us human beings. If we if we start recognising that we're run down, we're burnt out when we're on that one bar, it's just not gonna work. So we've you've got to be aware of what challenges are in front of you. What tools do I need to get these challenges done? Is it time that I take a break and take, you know, and having that space? But that's that's another one about self-awareness. I've got to say I I can preach it, but I don't always live it because I just I absolutely get that hyper focusing and run off like about three weeks work in about two days and then be absolutely fused, and I'll get I'll get I'll get a phone call or a message saying slow down, you don't have to go at this speed. But yeah, that that's just another thing, you know, being being self-aware of of what it takes. My family, I I don't suffer from Tourette's. My family does. That's what I always say, like, you know, you must suffer. And I went, nah, not really. I said, but ask me wife, ask my children. Yeah, but you know, being lighthearted about it, it's it's something. And that's why I think support as well, because John and myself, and Dottie, who's in the film, we used to run weekend retreats, and it used to be for the individual who had the condition. And we said, like, listen, this is about families, you know, this is about grandma and grandad, this is about my cousin, this is about my children. So we we started opening up family weekend, Tourette's weekends ran for three days twice a year, and they were fantastic. People made lifelong friends. They then moved away, and it had a cascading effect because they were so built up and encouraged that they started their own support groups off. So it's yeah, it's about the people who are around us. You know, we we can't ask for support without acknowledging the people around us who do support us. So I believe in that big time.

Neil Milliken: 25:38

Thank you, Paul. Um it's been great catching up with you. You've reached the end of our half hour, but I need uh um give a shout out to Amazon for supporting us, keeping us on air. Shout out to the folks at Genius Within, because we love them, right? So you can go and find out about them as well. And of course, you know, I swear is out in cinemas in the UK right now. It's going to be around the world. Gets a hundred percent review on IMDb, very few, and on Rotten Tomatoes. So it's a great film, right? Loads of great rave reviews everywhere. Go see it, go learn about it, and and and thank you once again, Paul. It's been a final word.

Paul Stevenson: 26:17

Everything that I spoke about and open my heart to you, like all the aspirations and hopes that I have I've achieved all, if not more. From going, not being able to catch the bus to leave the house to being an international speaker and work as an ambassador on behalf of Genius Within. So I thank you for that acknowledgement and being able to talk about it. And I'm I'm pleased to report back completely.

Neil Milliken: 26:37

Well done. Thank you. Great stuff. Thank you, Paul. Being a pleasure. As always.