Living with Tourette’s: Tics, OCD & Finding Freedom Through Music

Summary

The Neurodivergent Experience

Episode Summary: “Living with Tourette’s: Tics, OCD & Finding Freedom Through Music”

Date: April 15, 2026
Hosts: Jordan James & Simon Scott
Guest: Paul Stanworth, musician and Tourette’s advocate

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Overview

In this candid and deeply personal episode, Jordan and Simon welcome musician and Tourette’s advocate Paul Stanworth. The conversation explores Paul’s lifelong experiences with Tourette’s Syndrome and OCD, the nuances of tics and rituals, and how music has been both a haven and a tool for connection. Across heartfelt anecdotes, the trio examines stigma, workplace struggles, the transformative power of supportive environments, and the recent impact of the film I Swear on public perceptions of Tourette’s. The episode brims with empathy, humor, and valuable lived wisdom for neurodivergent listeners or anyone seeking a greater understanding of Tourette’s.

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Key Discussion Points & Insights

Early Experiences & Understanding Tourette’s

[03:33–07:32]

• Paul’s first memories:
  • Tics and rituals appeared in early childhood, manifesting in subtle and hidden forms. Paul describes managing intrusive breathing rituals linked closely with OCD: "Breathe in for good things, out for bad things, but it gets much more complex than that."
  • Paul recounts a poignant childhood moment when he tried to resist a ritual: "I walked away and I cried, because I thought, I’m never going to beat this, I’m just going to have to live with it. And I have ever since." (04:45–07:27, Paul)
• Masking and Compulsion:
  • Simon and Jordan both resonate with the sensation of building pressure and the compulsion to tic, describing it as "ants behind my eyes" (07:32, Simon) and likening suppression to "plugging leaks in a hose" (11:40, Jordan).
  • Paul emphasizes, "We're compelled to do these things. We don't have a choice... they're involuntary and compulsive. If you don't do it, you feel worse. If you do do it, you feel better—briefly, until you have to do it again." [07:58, Paul]

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Social Stigma, School & Workplace Challenges

[08:42–23:48]

• Childhood Bullying & Shame:
  • Jordan shares how overt tics led to bullying—"You are making everybody else terrible of you. So you just feel like a piece of..." (09:48–10:49, Jordan)—and how he desperately wished to stop.
  • Simon humorously reflects on visible tics: "One of the tics I had for a little while was just walking around with my middle fingers up, just like flipping the bird. It was really hard to try and explain to my parents when I was younger that I couldn’t stop it." [13:28–13:47, Simon]
• Suppressing Tics and 'Fitting In':
  • Paul recounts successfully masking his tics throughout school and only encountering major difficulties in adulthood, particularly in restrictive work environments.
  • He shares the traumatic experience of being labeled a "trouble causer" by a superior during a period of job loss and medical investigation: "That was rock bottom for me, absolute rock bottom" (18:21–23:00, Paul).
  • Yet one ally in occupational health told him, "If we can't find a job for you in an organization this large, then you haven't failed us, we've failed you.” (23:00, Paul)

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Finding Purpose & Regulation Through Music

[26:12–35:21]

• Music as Sanctuary:
  • Music provided a means to self-regulate and connect with others. Paul explains, "I felt that all these things that were going on weren’t happening when I was playing the guitar" (27:08–27:50).
  • He built his career as a musician after training as a support worker, connecting especially with disabled audiences—"That skill of connecting with people and communicating...is probably more important than being able to sing and play the guitar."
• Audience Connection:
  • Jordan praises Paul’s gift for making everyone (including his autistic wife) feel welcome at gigs: "You are such an inspiration...there is so much misery out there, to get a bright spark such as yourself, it just...for me, I’m just blessed..." [33:26–34:29]
• Stimming and Musicality:
  • For Simon, singing provides unmatched regulation: "The best stim that I can do is singing. I run out of air mid sentence all the time. But when it comes to singing, I don’t know many people that have breath control like I do. Ironic, right?" [36:49–37:30, Simon]
  • Music supports emotional connection and communication, as Simon shares: "I've just, in three seconds, made you a playlist of 20 songs that will say everything that I'm trying to say." [40:57, Simon]

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The Lived Complexity of Tourette’s & OCD

[42:53–48:10]

• The “Invisible” Load:
  • Paul describes the continual, exhausting mental processes underlying his symptoms: "I wake up in the morning and instantly this thing’s happening...my operating system is already 80% used up just dealing with that stuff. And then you’ve only got 20% left to deal with whatever the day throws at you." [43:54–46:17, Paul]
• Coping & Relationships:
  • Hosts and guest agree on the importance of self-care, patience, and finding “your tribe”—"There are people out there. Your tribe is out there and we always seem to find it." (35:21–36:49, Jordan).
  • Lighthearted admission from Paul: "She looked back at me and she, without even taking a breath, she said, it’s not Tourette’s, Paul. It’s you being an asshole. And she was right." [47:31, Paul & Jordan]

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Media Representation – Reflections on I Swear

[49:43–65:51]

• Film Resonance:
  • All share how I Swear ("the film means the world to you, doesn’t it?” [50:12, Simon]) powerfully captures their lived reality, especially scenes depicting bullying and misunderstood behavioral challenges.
  • Paul describes the emotional experience at the London premiere: "It was incredible because people felt comfortable to tic freely...it was almost like the whole movie was an audience participation thing." (55:46–56:46, Paul)
  • The film provides a three-dimensional representation for those with Tourette’s: "If you’ve got Tourette’s and you see somebody ticking, it's three dimensional because you see, hear and feel them. You feel the build-up. You understand the tension..." [57:46, Paul]
• On Diverse Representations:
  • The discussion acknowledges that not everyone's Tourette's includes coprolalia (swearing tics), and I Swear’s focus might prompt questions about representativeness.
    • Paul says, "You can’t just take a real human being and edit his life story...But I think Kirk Jones, the director, has done an incredible job… we can all identify with and use as a tool for our...advantage when trying to explain it to other people." [63:00–65:51, Paul]
  • The film sparks a broader conversation about the diversity of neurodivergent experiences and the need for nuanced representation.

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Advice, Advocacy, and Final Reflections

[68:54–72:28]

• Advice for Listeners and Self-Understanding:
  • Paul’s guidance for those navigating overlapping diagnoses: "You have to sort of have an open mind…learning about your condition and yourself is very important. The best bit of advice I can give you is be open minded and learn about it...We need to be aware of ourselves before we can do any of [awareness-raising]." [69:29–71:57, Paul]
• Community and Validation:
  • The hosts and Paul highlight the importance of community, mutual support, self-acceptance, and using one's story as a way to help others.
  • Simon summarizes: "This podcast talks about lived experiences for positive and negative, for all neurodivergent people...I really hope any of our listeners will come away and take something from it." [68:54, Simon]

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Notable Quotes & Moments (with Timestamps)

• "I’m never going to beat this, I’m just going to have to live with it. And I have ever since."
  — Paul Stanworth [07:20]
• "We don’t have a choice in it. We don’t know why, but we have to do these things. If you don’t do it, you feel worse. If you do do it, you feel better, briefly, until you have to do it again."
  — Paul Stanworth [07:58]
• "I just want to stop. I wanted these kids to leave me the fuck alone because I just wanted to get on with my life."
  — Jordan James [10:49]
• "You sitting still in an office is like a square peg in a round hole."
  — Force Medical Advisor (recounted by Paul) [23:09]
• "My hand would cramp up so much that...my wrist, my...all up my...my arm would just start cramping up and spasming. It was horrible. But now, now I've got the cuddly toys. I can just squeeze the cuddly toys and it helps massively."
  — Jordan James [13:13]
• "You are such an inspiration for so many young people who are neurodivergent in any way, who are literally just sitting around going, I’m never going to be able to do this...Your tribe is out there and we always seem to find it."
  — Jordan James [35:21]
• "Music really helps me get there...there are times where I will use music to communicate...I've just, in three seconds, made you a playlist of 20 songs that will say everything that I'm trying to say."
  — Simon Scott [40:57]
• "If we can't find a job for you in an organization this large, then you haven't failed us, we've failed you."
  — Force Medical Advisor (recounted by Paul) [23:00]
• "I wake up in the morning and open my eyes and instantly this thing’s happening...my operating system is already 80% used up just dealing with that stuff."
  — Paul Stanworth [43:54]
• "If you’ve done any amount of activity to raise awareness or just to help people feel like they’re not alone, then you will have done good things, and there’ll be people out there who you don’t even realize will remember you and they’ll remember you for the right reasons."
  — Paul Stanworth [54:14]
• "We need to be aware of ourselves before we can do any of that."
  — Paul Stanworth [71:55]

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Important Timestamps

• 03:33: Paul’s earliest childhood tic memories
• 07:58: Compulsive nature of tics and the urge-relief cycle
• 18:22: Work difficulties and discrimination at the police
• 23:00: “If we can’t find a job for you...”
• 26:52: Music as a coping and regulating force
• 33:26: Jordan praises Paul’s positive impact on community and connection
• 40:57: Music as an emotional and communicative lifeline
• 43:54: The exhausting mental load of persistent tic management
• 49:43: Introduction of I Swear and film’s impact
• 54:56: Paul’s emotional response at the film premiere
• 63:00: Media representation and the diversity of Tourette’s
• 69:29: Paul’s advice to those exploring multiple neurodivergent traits

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Episode Tone & Takeaways

Warm, honest, and irreverent, the episode balances tough truths with laughter and practical hope. Paul’s story, echoed by Jordan and Simon, highlights how self-understanding, patience, creative outlets, and supportive communities can transform lives often hindered by stigma and misunderstanding. The discussion of I Swear underscores the value of nuanced, lived representation in media—not just for public education, but for the validation and healing of neurodivergent people themselves.

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Next Steps:

• Explore more episodes of The Neurodivergent Experience for lived insights on neurodivergence.
• Seek out I Swear (film) for a powerful depiction of Tourette’s.
• Connect with Paul Stanworth online (especially if in the Horsham area) for music and conversation.

"Be kind to yourself out there. Take some good advice. Be lucky if you can be. We'll chat to you next week."
— Simon Scott [73:06]

Transcript

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[Jordan James]

Welcome to the neurodivergent Experience Podcast. A podcast where we share the lived experiences of neurodivergent people to help create a better understanding for our community.

[Simon Scott]

Join us every week as we bring you honest, raw and inspiring conversations with specialists, advocates and individuals who know exactly what it's like to live the neurodivergent experience.

[Jordan James]

I'm Jordan James, a neurodivergent specialist, father of neurodivergent children, husband to a neurodivergent wife and author of the Autistic Experience. And I'm joined by my best friend.

[Simon Scott]

I'm Simon Scott. I'm an autistic ADHD broadcaster, actor and advocate. Join us as we journey into unraveling the neurodivergent experience.

[Jordan James]

Hello, hello and welcome back to my show and only my oh no. Scotty Sky, I got you here.

[Paul Stanworth]

He's.

[Jordan James]

You're here, you're here.

[Simon Scott]

Guest today. He's showing up in front of his new mates. What?

[Jordan James]

What?

[Paul Stanworth]

What?

[Simon Scott]

See how that's the first time that he's not had a rebuttal straight off the bat? He was like, oh, you found me out.

[Jordan James]

I'm basically, you know, you know when, when your kid has like a birthday party and they got all their friends around and they start acting up, that's. That is me right now. I got my new friend Paul. I swore off friends for the last one. That screwed me over. But then I met Paul and I was like, oh, no, that's, that's, that's like an actual nice person. So, yeah, so I let my guard down again. Help me, help me, everyone.

[Simon Scott]

Well, that voice that you're hearing there is our guest for today. So we're talking to Paul Stanworth. He's a full time working singer and guitarist in Horsham in the UK and is a family man living with Tourette's and helping where he can with Tourette's Action, which is a support and research charity working to improve the lives of people living with Tourette's syndrome. So, Paul, we obviously been a neurodivergent experience podcast. We've talked about autism and ADHD at great length and Jordan more so than me. But I didn't realize I had Tourette's syndrome until I had my diagnosis. And I thought that thing that I do with my mouth and the blinking was just, you know, I was like, oh yeah, everyone chews their lips and, you know, can't keep their mouth still. This is just something, this is just a little habit. And then I did more conversations with my parents and I realized there was a lot more going on than I thought there was. And Jordan has been really open in previous episodes about his tics. So what are some of your earliest memories of realizing that you had Tourette's?

[Paul Stanworth]

Well, it goes right back to being a very young child. I myself, I was diagnosed late because a lot of my tics to the naked eye and ear were very subtle and I hid them and disguised them. That little cough I did then, that was actually a tic, but you wouldn't barely notice it. That's if I cough like that, I don't have to squeak loudly, basically. So I learned how to find other things like that cough hits the frequency I need to fit to hit to satisfy the tick. But a lot of probably the most disruptive tics in my daily life is this, is this 24, 7 set of rituals that I've got. I also have OCD, and they're two combined together very powerfully, so that every single breath that I take, I have to be breathing in when I look at certain things or hear certain things, and out when I hear and see other things. And it's really complex. So just a very brief introduction to how it generally works. Breathe in for good things, out for bad things, but it gets much more complex than that. And you asked about my very first memory. I was probably five or six years old, and I remember that because it was a few years before I moved down south from. I was brought up in Bradford in Yorkshire, and I remember being outside my house in Bradford. I was nine when I moved away, so I was younger than that. And I realized that I was walking down the street and a dog walker had walked their dog and the dog had left a little parcel. And back then you didn't have little bags to pick it up, they just left it. And I looked at that and I had to breathe out forcefully whilst looking away from it. And I just thought to myself, I'd been doing this for a long time by then, and it was starting to get a bit annoying and a bit tiring. And I hadn't heard of any of my friends talking about this sort of thing, so I hadn't told anybody about it because I was embarrassed, didn't think anybody else did it. And I thought, well, if they don't have to do it, you don't have to do it. So I turned around and I looked at that dog mess and I took a big deep breath in, thought, I'm going to beat this and walk away. I got two or three steps down the road before I started getting really anxious and agitated and I had to turn around. It's like, you know when you're holding your breath and you have to take a breath, and after a while I just had to turn around, look at it again and breathe out. But I had to breathe out twice as forcefully then because I've taken a deep breath in and I started to double it up to balance it out. And that was the age, you know, maybe six years old. And I walked away and I cried because I thought, I'm never going to beat this, I'm just going to have to live with it. And I have ever since. I'm still doing it right now while I'm talking to you, everything in my peripheral vision has to be the right balance and I have to glance. You see me during the courses, I'LL be glancing all over the place. That's just so I can breathe, basically, so.

[Simon Scott]

Well, it's funny you say that, Jordan. Definitely back me up with this. I just had it there. I have to put pauses because I feel like I'm running out of air. I will talk to somebody and I will be in full conversation. And it's not like the thought disappears. It's that there are ants behind my eyes. And if I don't look away and just have a pause like I did just then, I feel like my head's going to explode.

[Paul Stanworth]

That's. Yeah, I totally understand that. Yes. There's a lot of crossovers there between what you've just described and what I described. I totally understand that. Certainly the, you know, the sort of power and the urges behind it and, well, the compulsion. So we're compelled to do these things. We don't have a choice. It's. I mean, we often use the word involuntary to describe Tourette's, which is correct, because we don't want to do these things. But I think it's more powerful than that. We're compelled to do these things. We have to do them. They're involuntary and compulsive. We don't have a choice in it. We. We don't know why, but we have to do these things. And. And if you don't do it, you feel worse. If you do do it, you feel better, briefly, until you have to do it again. So. And it can be. It's very disruptive.

[Jordan James]

So, I mean, I've talked about this before where I had very, very pronounced tics when I was younger is why the. The scene in, I swear, when he's walking through the corridor and the kids are mocking him as they're walking. And that just hits home so much when I think about Tourette's because I've. I didn't realize that other people had had that. I mean, I know other people have had that. It's in my book that the first chapter, my book is all about bullying. So I know that so many people are getting bullied for being neurodivergent. But it's really interesting because I'd never really thought about my Tourette's as being like a big part of me. I was. Thought it was just something that was there. And like you, I. Paul, I've managed to sort of. I mean, because of the time we grew up, we're not that different in age. And there's that whole 80s 90s mentality of, like, especially 70s 80s mentality of like, you know, just. Just stop. Just stop it. Yeah, you're. You're being a dis. You're disrupting the class.

[Paul Stanworth]

Yeah, you're the problem.

[Jordan James]

You're the problem. Everyone else around you, they're not the. You're the problem. And you are. You are making everybody else terrible of you. So you just feel like. You feel like a piece of. And then. And then on top of that, you're like, what? But I don't want to do this. Like, my head would fly around, my arm would. Would. Would shake out. I. I would. I would go constantly. And this would all happen at the same time. I look like I was doing a disco drive most of the time. And. And I, I got freaking stop. Like my whole life, I just want to stop. I wanted these kids to leave me the fuck alone because I just wanted to get on with my life. And now I literally managed all these years to condense it just down to my shoulder, which twitches and my hand, which is just on the go constantly, mine's like this. Oh, yeah.

[Simon Scott]

I can't. I can't keep my hands still. It's like invisible piano, my par used to call it.

[Jordan James]

Yeah, it's. It's really frustrating.

[Paul Stanworth]

I've got just this last week or two. I've. I've always had this little tick in my little finger where I do that, but it gets. It's worse from time to time. But I've. You can't see on here, but I've currently got my leg implaster because I had surgery on my ankle a couple of weeks ago, partly due to the fact that I've ticked in my ankles all my life. I'm constantly jerking my ankles around and it's basically. It's. It's not entirely that. It's general wear and tear from work and that as well, but I'm sure it's partly due to Tourette sticks. Since I've had that immobilized, the tick in my finger has got worse and has been really painful. A couple of days ago, I had to strap two fingers together just to stop me injuring it. So. And that's just because I can't take in my ankle at the moment. He's just gone and found somewhere else.

[Simon Scott]

It finds somewhere else to come out.

[Paul Stanworth]

Yeah, yeah.

[Jordan James]

We have talked about this in the past where it's. It's like when you're trying to plug a leak in a hose and then you put one bit and then some. A different comes out and then you're like 10. 10 fingers on 10 leaks. And then suddenly a different leak comes out and you're just like, I can't stop this. So the only way that you. You can really deal with it is just by accepting the fact that it happens, doing everything you can to make it bearable for you.

[Paul Stanworth]

Exactly. It's hard to accept it when it's hurting. That's the trouble in it.

[Jordan James]

So. Exactly. Oh, God. Yeah. Sometimes my hand cramps up so much, which is why I have I. With my cuddly toys. I. A lot. I used to think it was stimming, but it wasn't. It was literally I would hold them because if I didn't, my hand would cramp up so much that, that my wrist, my. All up my. My arm would just start cramping up and spasming. It was horrible. But now, now I've got the cuddly toys. I can just squeeze the cuddly toys and it helps massively. But I've had it so much. Well, I've. I've got my hands so much that I literally, like, dug my nails into my own palm to make it bleed because it just won't stop and it sucks. But it, you know, it's manageable. And I think that's. That's what's a really, really important thing. And I think it's only manageable in society if people understand it, which is where someone like you comes in.

[Simon Scott]

Paul, I'm intrigued.

[Paul Stanworth]

Responsibility there.

[Jordan James]

Well, yeah, it's all down to you.

[Simon Scott]

Yeah, it's no pressure. I had this when I was growing up and I'm sure many listeners that experience these feel the same. I was going through periods of, like, lots of different hand motions, and one of the ticks that I had for a little while was just walking around with my little. My middle fingers up, just like flipping the bird.

[Paul Stanworth]

Yeah.

[Simon Scott]

And it was really hard to try and explain to my parents when I was younger that I couldn't stop it. How were people responding to you when you were younger, when all of this was starting to develop?

[Paul Stanworth]

Well, when I was at school, I. Because like I described earlier, I was able to hide and suppress stuff. Nobody knew about all the breathing rituals that were going on because they didn't need to know. I. I hid it well, just dealt with it myself. I was always a entertainer. I always, like, was the class clown, but I never thought much of that apart from the fact I like to make people laugh. So my school days were actually quite happy. I didn't really excel the first time I noticed that there might be something Going on was when it was coming up to my GCSes and I realized I could not sit still and revise at all. I did absolutely no revision for my GCSEs, and I got. I got. I think we were the first. We were the first year that did GCSEs. I got two Bs, two Cs, two Ds, and an E. And my. Which were average then, or maybe, you know, very much slack, bang on average. My son basically just did his GCSes and his lowest grade was the equivalent of my highest grade. But I did okay. And I just got enough to get out and sort of get a job and all that. But it wasn't until I got out into the workplace and didn't have an outlet for the energy that I. Because at school you've always got an outlet. You have a break from lessons, you go run around in the playground, you can have a laugh and a joke with your friends, you sit still for a while, but you get a break from it. It wasn't until I went out and started, I decided in my wisdom, I wanted to work in offices. There were a lot of office blocks in our town and there was always work. So I thought, oh, let's try and get a job in computers or admin or whatever. And I got a job working for a life insurance company. And the first year or so where I was doing a processing job, shuffling paperwork, I was terrible at it. I couldn't work fast enough because the repetitive nature meant my mind was getting. I was getting intrusive thoughts telling me to take. I was slowing down. I wasn't able to focus. There was a brilliant manager there, fortunately, who, even though I hadn't been diagnosed, she spotted something. She said, paul, you're not suited to that role. Let's put you on the telephone help desk. And that was a blooming marvelous move because it was varied. It was interesting. I was talking to people all day. Every call I had something different to deal with. I was getting up and running across the filing cabinets to get out files and come and answer the queries. Active, varied, lively work. And that worked a treat. I ended up running that help desk. I was the boss of it. But then I got made redundant. The company relocated, I was made redundant. I thought, right, I'm doing all right in offices. I didn't make the connection between the fact that. That certain types of work were better for me than other types of work. And I went to work for the police and I had an ad. It was a civilian Job and I had an admin job putting files together for court cases, for prosecutions. First year or. Well, actually in the first nine months, really, it wasn't even a whole year. I was one of the stars of the department. I had this burst of energy. I was really into it and I got commendations and stuff like that. And then I was moved from the section I was on. And at that point I was in a quiet office with one other person and we had a really good rapport. I'm still friends with her now. You know, this is like 30 years later. We had a really good rapport, worked together well. Then I was moved into a bigger office where I was required to sit more still and more quiet and focus on the pile of papers on my desk in front of me. And things went horribly pear shaped. So what you described you went through at school, Jordan? I went through when I was working for the police, where I was. I then started getting into trouble. We were getting. It was like a scene from a TV crime show where people from the Crown Prosecution Service were storming in from the Magistrates Court, which you could see out the windows right next to us. You could see them storming across the road, coming up into the office. Where's these files? We needed them for today. The cases had to be adjourned because you didn't get that paperwork ready. I was under all manner of pressure and I was put on a written warning and at that point I just didn't know what was going on. I just knew my mind was locking up. I also noticed that when I came out of work every evening that I got to the top of the stairs, I never used the lift. I just wanted to go down the stairs because I needed to be alone on that staircase for a couple of minutes. Top of the stairs. I would just contort myself and go and just have to. Almost like, you know when you have a yawn and your whole body just tenses and then relaxes?

[Simon Scott]

Yeah.

[Paul Stanworth]

And I. I'd been building it up all day and then I walked home part along this busy road and I noticed that as lorries were going past, I was letting out a loud squeaking noise. There was just. Everything had built up all day long and then was released at the end of it. And I happened to mention this to a girl I was seeing at the time. It was a student nurse. And she said, you need to go see a doctor, because I like. So I was in danger of losing my job over it. And she said, there's something going on there. You need to go see a doctor. And I went to see my GP and he referred me to a psychotherapist whose name was John Davidson. And he told me, I think you have Tourette's syndrome and ocd. And at first I'd been told, we think you have OCD and perhaps a bit of Tourette's. But he said, no, there's probably more of that and it's. And they fuel each other. And he said, oh, I don't know if you've heard of my namesake John Davidson, but check out the documentaries about him and read up on it. And at this point I became very fascinated. And meanwhile the written warning at the police had been ripped up, but they sent me home until I got properly diagnosed and treated, they were. And to be honest, that went on for a ridiculous length of time, best part of a year. They kept my sick notes, kept expiring. I'd present myself for work because I felt I was fit for work and they would say, no, you need to go on, we can't have you in the office because you're disruptive. And that was the word they used. This was the place. I also had numerous meetings down at Occupational Health, at headquarters. The superintendent in charge of my division was very unsympathetic, shall we say. I used to take my mum and dad with me. My mum was quite a fiery character. She was very big on rights and injustices and stuff and so she probably did rub them up the wrong way a little. But there was one day I went down there and the superintendent said, do you mind if I just have a word with you without your mum and dad? I took them along basically because my focus, I couldn't remember after stuff they said, so I took them along just to make notes, really. He said, can I have a word with you without your mum and dad? And he took me into a room and he said, paul, there's nothing wrong with you, you're just a trouble causer. And I felt that that was rock bottom for me, absolute rock bottom. I didn't know what to think and I won't go into details, but I had, because I'm quite embarrassed about it. But that led to a very low moment where I let out a cry for help, ended up being taken to hospital and I wasn't seriously in any danger at any point, but it was very dramatic, should we put it that way? And that for me was the point where I hit rock bottom. The next day I took a grievance out against that fella. I didn't care how high ranking he was. He wasn't going to speak to me like that. I'd just been. I'd actually been diagnosed at that point by two of the highest authorities in the country. The police had actually paid for me to go up to Birmingham to the Queen Elizabeth psychiatric hospital, and Dr. Hugh Rickards up there was the first person to give me the diagnosis. And this was backed up and followed up by Professor Mary R.O. robertson at the National Hospital for Nervous Diseases in London. And I took a grievance out against him and he had to write me a letter of apology. And this was the start of me coming back up again. And then there was also a very good ally in that organization. The Force Medical Advisor, who was based at headquarters, had a nephew with Tourette's and he was absolutely brilliant. Eventually, I'm pretty sure. Actually, I don't. It's hard to say this without accusing, but I think I was. I was a problem to them. I was hard work. They. They were obliged to try and find me a suitable role within the organization. And I think they paid lip service to it a bit because they just wanted me to quit. That's my feelings on it. It would have been easier for them if I'd have just quit and walked away. But I wanted to work for them because I'd enjoyed that time. I'd spent the first nine months I was there and I thought, really, I'd love to work for you. If you can find me a job, I'd appreciate. So I just knuckled down and tried all these little roles they sent me, but they were just token roles. They were just like going through the motions. In the end, they medically retired me. And when I. The very last time I went to headquarters, I will never forget what the Force Medical Advisor said. He said, paul, if we can't find a job for you in an organization this large, then you haven't failed us, we've failed you. And I've kept that with me and that's that. Like I said, that was the start of coming back from rock bottom. And that is all. All that feels a lifetime ago now because that was when I realized there was support and understanding out there. In the face of the adversity that you've got as well, there's allies out there as well who want to understand and want to learn and just want to accept you, basically. So there you go. Did I say that all in one sentence?

[Simon Scott]

No. I'm moved by your story, Paul.

[Jordan James]

Yeah, same.

[Simon Scott]

There's a lot there that is very different. To my own.

[Paul Stanworth]

But I realized then I couldn't sit still in an office anymore. So I was able to find jobs. I've, you know, I've been a full time musician. Well, it's been my main job now for about 18 years but I did various jobs before that. But I made sure they were like customer facing jobs, varied jobs where I could move around and chat and be noisy basically and be active. So I've, I've done okay in a few jobs since then. I learned a lot. Yeah, the Force medical advisor also said you sitting still in an office is like a square peg in a round hole. Which if I'd have known I had Tourette's it would have been obvious. But you live and learn, don't you? But I learned a lot from that experience for in good and bad ways.

[Simon Scott]

So now thank you for sharing that with us. That's an incredible story, Paul.

[Paul Stanworth]

That's probably it for me. Everything else is boring. So.

[Jordan James]

No, I'll see you later. Let's, let's take a break and then we can get into your music career.

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[Ashley Dupuis]

hi everyone, it's Ashley Dupuis, the in house therapist here on the Neurodivergent Experience and host of Mindful Mondays. And if you've been listening to these podcasts and thinking, gosh, I'd love to explore this work more deeply. I wanted to let you know about a special final opportunity to work with me one to one. So I'm gradually bringing my regular one to one practice to a close so that I can focus more on group work and recordings and other new exciting projects. But before I do, I'm taking on a small final round of one to one clients for a six session journey running from May to the end of July. So if this work has been resonating and you feel called to work with me directly, now is your last chance to do so and I'd love to hear from you. You can register your interest by emailing me@integrative iommail.com or find out more at integrative iom.co.uk.

[Simon Scott]

Welcome back to the neurodivergent experience we've been having a conversation with with Paul Stanworth who's a full time musician and is a family man living with Tourette's. And Paul, the first section that we just had there, that's so reflective of I'm sure many listeners experiences but definitely mine and I know Jordan's as well. But one of the overlaps that you and I definitely have is music and a love for music and how it makes you feel. So how did you become a, a full time professional musician? Because I have always wanted to. I've just never really been brave enough to go for it.

[Paul Stanworth]

I just found enough people who like bad music.

[Jordan James]

I love your music. You sung me Yellow Submarine and I, I found yeah, I'm gonna do that

[Paul Stanworth]

every gig you come to now.

[Jordan James]

Like a heartthrob moment.

[Paul Stanworth]

I've always loved guitars. I'm gonna move on because Jordan's starting to flirt with me now. I've always loved guitars. You know, I used to sort of look at just brochures of like Fender guitars and stuff and I dreamed of having one and they were expensive obviously so I didn't get one for a long time and. But I always knew that I, it was strange because I didn't think that I could sit still and focus enough to learn how to play the guitar. But my passion for them overcame that and I eventually managed to get a guitar. Sort of learnt a few chords and, and I was hooked from there. I also noticed that this was probably when I was in my late teens. I put my first band together. I was the worst musician in the band. I managed to recruit some other musicians who were absolutely brilliant and they taught me a lot. I learned so much just from being in a band with them. If they wanted to do a song, they'd say, look Paul, if you want to do this chord you got put your fingers there and. All right, okay. So if I had somebody showing me where to play, where to put my fingers on the fretboard. Then I could actually sit there because I loved it so much and how it felt and sounded because it's a so physical experience as well. You get the resonance and the feeling going into your body and it settles you and calms you and you channel in that energy into focusing on what you're doing. And so I found that although I wasn't playing much in terms of fancy chords and notes and that I could play them well, I was enjoying it so much. I would sit and learn and learn and repeat that process until I held those chords perfectly. And even now I'm still nowhere near one of the, you know, a great guitarist in any way. But I play enough chords and I play them well enough to deliver a good product. And I learned to sing since. But so it was always a hobby and it was always a release. It was always good for me. I felt that I wasn't. All these things that were going on weren't happening when I was playing the guitar. So I just fell in love with it. And then when I let you know, got moved on from the police and got other jobs. I did various jobs and then I eventually went to work as a support worker with people with learning disabilities. And eventually I got the opportunity to play music with them and for them. I trained as a support worker. I got the only qualification I got since I left school because I never went to college or uni. I got an MVQ3 in health and social care because they offered me the opportunity to do a paper free one, which was brilliant because I couldn't have sat and done a paper based one. I think I got through that in record time. It took me two months from start to finish to get that qualification under my belt and I was pretty proud of that. But during that case, I learned about connecting with the people I was working with. People who perhaps didn't, you know, they were. Their communication skills were limited, some of them couldn't talk and you had to make eye contact and get responses that way. And eventually I started playing more music and doing less support work and I started playing care homes and centers for people with disabilities around the area. And that started getting really busy. I found that I was able to make a really good connection with people from my training as a support worker. And I was in demand. And it just built from that, really just sort of snowballed. I was probably one of the busiest working musicians in the area before anybody out in the local music scene had even heard of me. And then I started. I thought, well, let's try and tap into the pop scene a bit. And so I went and played open mics and showcases, free charity gigs and stuff, and that started getting me bookings around it. But it basically just all came about from working with people with disabilities and getting out there and built. Using that as a platform. And that's still the sort of, you know, the platform I build from now. I play. I'm busy now weekends. Most weekends I'll be out playing wherever I needed. I play pubs, clubs, parties, festivals. I've done a few sort of quite impressive gigs in London.

[Jordan James]

I've got.

[Paul Stanworth]

It's not a political thing, it's about. I play a few gigs for the Labour Party in London because a chance meeting with Neil Kinnock, who was the. He's a former leader of the Labour Party, a gig about a decade ago, we discovered a mutual love of rock and roll and he got up on stage and sang some Elvis songs with me. We've been friends ever since. He was. I was sort of texting him yesterday and he's introduced me to quite a few opportunities around there as well. So, yeah, everything just. But it all goes back to training as a support worker, learning how to connect with people and people just wanting you to play for them. And that's one thing I still do now. I try and make eye contact with whatever audience I'm playing to try to connect with them and. And we were talking earlier about bad jokes. That's important as well. You got to be able to crack bad jokes.

[Jordan James]

Yeah, I noticed all, like, when. When you were playing live and Sylvia and I were there with my daughter Sophie, and it was just. It wasn't just like music, it was fun. Like, we, you know, you. You bring people into. I don't know, you know, I mean, it was the first time we'd ever actually met in real life. But, you know, I'd like to say that we were mates and now we're friends. It's. It was. It was yours. You're so welcoming and you're so. Like. My wife is very autistic. She's just in. In the way that she does find it very difficult to open up and meet people, especially new people, especially in a pub environment. And it's the first time she's ever been there and it took a lot to get her there. But you connected. Like, she really enjoyed it. She was super tired because she'd been working all day, but she really enjoyed it. And that was because of you, because you're just that person that just makes people feel happy. And like, that's. That's a. That's a rare thing at this point in life, that is a rare thing because there is so much misery out there to get like a bright spark such as yourself. It just. For me, I'm just blessed to, like, have been able to connect with you over Facebook, which was just very serendipitous, I have to admit. The. The way that will happened, we won't go into it, but it was very serendipitous.

[Paul Stanworth]

That's. That's really kind of you. And. And I'm. I'm touched by that because, to be honest, that's sort of. I mentioned earlier, I'm. I'm not a great guitarist. I'm. I'm a fairly good singer, I think.

[Jordan James]

I like, though, it was really good, dude, but.

[Paul Stanworth]

But I sort of put everything together and I think the. The glue that binds it all together is the connection with the audience. And that night you came to the gig, that Bedford Arms in Horsham, by the way, I should give them a little plug because they're. It was a nice little place to go and there's a bit of space there as well. And it wasn't exceptionally busy. It was. There was a. There was a few groups of people and on a night.

[Jordan James]

Perfect for me.

[Paul Stanworth]

Yeah, well, that's. But, yeah, but on a night like that, when it's just me playing solo as opposed to with a noisy band, which I sometimes play with, I try and take the opportunity to try and get to know the entire audience. You know, I was talking to you guys for a bit. There was a couple at another table and they'd come in and they stay till the end because we were just bouncing off each other and you just, you know. So it becomes a sort of social thing where we're all there together. I'm not playing at the audience. We're all just.

[Simon Scott]

You're playing with them.

[Jordan James]

Not.

[Paul Stanworth]

Yeah, yeah, basically, yeah. And they're. They're part. I love it when the audience becomes part of the show, I suppose, you know, where. Because there's a lot of gigs you do where it's your job to create an atmosphere, you know, at weddings or various parties and that, where families quite rightly want to get together and have a chat, catch up with each other, might not seen each other for a while, and you just quietly go about your business in the corner and. Yeah, it's still nice. It's enjoyable. You're providing a service, but it's so nice to be able to chat and connect with an audience, and that's what I really thrive on. I try to do that. That is, for me is probably more important than being. Well, I need to be able to sing and play the guitar, but that's the glue that binds it together, as I mentioned. So, yeah, that's something I always try and focus on. And I learned that, as I say, from working as a support worker. Just that skill of connecting with people and communicating with people.

[Jordan James]

Just. Just quick, I just want to say it's.

[Paul Stanworth]

It. It's.

[Jordan James]

You are such an inspiration for so many young people who are neurodivergent in any way, who are literally just sitting around going, I'm never going to be able to do this. I'm. I'm, you know, I'm not going to be able to have friends or talk to people. I'm just not going to be able to do this. You know, I can't do this. And, and you. And, you know, me and. And people like us and, and Scotty was. Who has so many friends and. And we have. I have so many friends. We have so many friends and we make wonderful connections. And I just wanted to say to anyone listening who is struggling with friendships is struggling with connection, just don't be hard on yourself. Just be patient. There are people out there. Your tribe is out there and we always seem to find it. I didn't have any real friendships outside my own family, my family that I'd made, not even my brothers and sisters. They weren't my friends. I didn't have any friends until I went on social media in 2019. And now I've just. I've got so many wonderful connections and it feels so good. But, yeah, Scotty, you love music too, and so, like, how does music help you? That's what I know.

[Simon Scott]

Oh, goodness, mate. Well, I'll use an example and I'm sure you'll agree with this, Paul. I find the best stem that I can do is singing. It's like I am struggling to control my diaphragm a lot of the time when I'm talking. I run out of air mid sentence all the time. But when it comes to singing, I don't know many people that have breath control like I do. Ironic, right? Like, I can sing a song in, like my baritoneal voice and have such a booming resonance. And then as soon as I'm talking to strangers rather than singing to them, it's like everything just closes up. You got really high and you go

[Paul Stanworth]

from Johnny Cash to Joe Pasquale in two seconds.

[Simon Scott]

I couldn't agree more. It's like, even when I'm so aware, like when I'm talking to people how much I'm in the top of my palate and I'm not resonating and I can feel myself or my larynx getting tight and squeaking, and then as soon as I sing, people are always like, so taken aback by the boom of my voice. And like, even when I was playing guitar, I used to be in a guitar orchestra at school and I went right from the sitting right at the back to my teacher eventually putting me right at the front. And I was constantly moving it from my left knee to my right knee. And she was like, no, it's got to be on your left knee. I was always moving my hand position because I never felt like the technique was what was right for me. I was just always moving around.

[Paul Stanworth]

Are you right handed?

[Simon Scott]

I am right handed.

[Paul Stanworth]

On the. On your left knee. Were you. Were you taking classical lessons?

[Simon Scott]

So I was taking classical lessons, yeah. Was constantly comfortable. It's not comfortable. And also as well, my wrist was locking up because one of my stims is to roll my wrist. So I felt like I was constantly doing that. And I ended up having a conversation with my guitar teacher about it where I was saying to her, when we're playing these songs, I find following the music and playing what everyone else is playing really boring. Can I just improv? She went, yeah, go for it. And I started doing solos and started like going from the third fret down and going in different keys and adding things to stuff. And it made me a lot better musician to have that sort of freedom and choice. But the thing that I loved so much about playing music is how much it opened music up to me in that I stopped worrying about what other people would like and just listen to stuff that made me feel good. And it's basically been the one constant in my life is my music collection. And my playlists are like so precious to me. If my house set on fire now, I would be stood in front of my vinyls going, well, I think I need to take that one and I need. The room would be filling with smoke and I would be frozen. I wouldn't know what to pick up.

[Paul Stanworth]

I've got a box of CDs that are very precious to me and some of them are by a band called the Rainmakers. They had a hit in the UK in the 80s and I've loved them ever since. I know them now. I've actually worked with a couple of guys. They're From Kansas city. And their CDs are hard to get hold of. So I've got a box that I keep them separate from the rest of my collection that's just so I could grab it if there was ever any problem. But interestingly, there's One of their lyrics was, I reached for a figure through the smoke and the sparks. Which one did I take, the girl or the guitar? Which one did I save? The girl or the guitar? But yeah, you can sort of. Yeah, it just gives you an idea of stuff that's precious to you like that, though. I mean, obviously that lyric relates to a person, which is a bit different to a vinyl collection or whatever, but it sort of gives you that. That your priorities in life. And I think it is perfectly acceptable for music to be one of your priorities in life and for your vinyl collection, my CD collection, to be that important to us because they provide us with so much joy and therapy and everything we need basically, just. It's just that I think we're quite justified in having them that high on our priority list.

[Simon Scott]

Oh, I completely agree, Paul. There are so many moments where I'm alexithymic and I struggle to. I express emotion at the wrong time. I cry when I don't want to and when I should. I don't. Like, that's just who I am as a person. But music really helps me get there. But there are times where I will use music to communicate in the. There are ways that I'm feeling at the moment in time. Like I was trying to express to somebody, like, how certain things made me feel and I just couldn't find the words. So I went. I've just, in three seconds, made you a playlist of 20 songs that will say everything that I'm trying to say. Please go away and listen to it. And that is something that has really helped me not feel disabled in moments where I'm trying to connect with people. And that eventually led me into music journalism because I was the only thing I was finding I could talk about and was just obsessed with it. Like, the. The thing that I used to be is I used to be a bit of a gig rat. I used to love finding new artists and following them and, you know, so many of the people now that in the charts and stuff, I had the pleasure of seeing them play bars and clubs in London or traveling over from America for the first time. And you feel a part of people's stories. It's. It's a really, really powerful thing. And yeah, it's. It means so, so Much to me. And there are so many times where I rely on music to help me just feel human again. There are times where I get so wrapped up in my thoughts and, like, one of the things I never really even considered is the. Is the mental effect that Tourette's can have, let alone just the physical. And dancing has helped me so much in so many moments where I can put a song on and sing along to it and dance, and I come out of it and I'm like, oh, I can. I can. I can get on with whatever I need to deal with right now.

[Paul Stanworth]

Just gets it all out your system, don't I?

[Simon Scott]

So, yeah, it feels like a bit of a cleanse.

[Paul Stanworth]

Yeah.

[Simon Scott]

It's like I. I was in a. A public situation a couple of weeks ago where I was really struggling to get this nervous energy out because I was in a situation where I was like, I'm happy, but I'm unhappy. And that Yin and Yang clash was really coming on. And I could feel my face scrunching up and my hands were. Were shaking and my shoulder was like, jiving like Elvis's knee. And I went into the. The hotel room and I put a playlist on shuffle and all of these, like, really chill songs were on. And then Born Slippy, the radio edit, just came on and I genuinely, just on the spot, just got it all out. And it was like I'd had a cry that I'd been holding in for, like, a year.

[Paul Stanworth]

Yeah.

[Simon Scott]

And I walked out into the hotel. I was just like, I'm me again now. I can get on with this. It's crazy how it does that to you.

[Paul Stanworth]

What you mentioned about your diaphragm right at the start of this segment as well, was. I mean, I mentioned about my breathing rituals earlier as well. And there's times when, you know, we are. And every case of Tourette's is different, but there are also things that we all have in common. And one of those things, I believe, is that the severity of it can increase depending on your mindset. Whether you're stressed, your physical condition, whether you're tired, even if you're excited about something, your tics can get worse. And I noticed that there were times during the pandemic where I was really struggling to breathe just because I wasn't able to work. I wasn't able to go out and play music. And so that was. My medication was taken away, basically, and I had to find ways I couldn't actually reset my diaphragm unless I found time to sit completely still. And shut my eyes. And of course, as I went to shut my eyes, I had to make sure I was breathing in while my eyes were open because closed eyes are associated with death for me. And so that's a breathe out thing, even saying that word just then. I had to make sure I was breathing out after I said, as I said the next word, just. It's a constant thing and as you tie them, you, you can manage it to a certain extent and fit in with your schedule, but then it will just creep up on you and take over. And so, yeah, what you were saying about the breathing really hit home. And there's times where it is literally suffocating, isn't it, if you're affected in that way and just, just everyday things. I mean, I've always described sort of how my case is, is I wake up in the morning and open my eyes and instantly this thing's happening because the first thing I see I have to work out how I'm going to breathe at it. And so when I wake up, it's like my, if I'm a computer, my operating system is already 80% used up just dealing with that stuff. And then you've only got 20% left to deal with whatever the day throws at you. And before long you will fill up. And if you feel, if you don't manage it right and it fills up too much, then you're just going to lock up, you're going to hit a crisis point. It's just the way it is because you don't have the processing space left for everyday things that other people who aren't affected do. And that's, that's the way I always look at it. And I try and find, try and make sure I'm not. And that's where overload comes in as well, because we're very quickly overloaded by just things that a lot of people would take in their stride as everyday life.

[Simon Scott]

I mean, I had it just the other day, Paul. I'm scrolling through the news. I've been looking at all the Artemis to space stuff. Found it really interesting, really regulating. And I'm scrolling through and of course something comes up about Iran and I genuinely couldn't. My breathing went in manual.

[Paul Stanworth]

Yeah, yeah.

[Simon Scott]

And it wasn't even that I was super anxious about, was that I suddenly felt like somebody had just put a, like a bottle of a jam jar in my mouth. And I was like, there's only these tiny little holes at the side I can breathe through now. You know when you see in movies where Somebody's in a room that's filling with water. That's what it can feel like just from reading the wrong thing or like if I'm driving and somebody pulls out in front of me and I have to break. As soon as everything's settled, the first thing that I do is and just take a huge. Fill my lungs up because I genuinely feel like I've got lead in my lungs.

[Paul Stanworth]

Yeah, yeah. We can get out of breath just from sitting still doing what other people think. We're just sitting still doing nothing. But we're actually hugely active just while we're sitting still or as still as we can, should we say?

[Simon Scott]

I say that to my partner all the time and I've said it to Jordan as well. I may look like I'm doing nothing, but I'm actually very busy.

[Paul Stanworth]

That's perfect way of describing it. Really is. Yeah.

[Jordan James]

Yeah.

[Paul Stanworth]

And I can't do that for you because I'm knackered. So there we go. Actually, no, I, it's, it's tempting to milk it sometimes, but I remember once I was just, I, I was just winding my wife up about something and I just looked at her and I know she knows the difference between because I, I don't have like coprolalia and things like that. So I think I said something that just not rubbed her up the wrong way. But I was pushing my luck, put it that way. And I just looked at her with a cheeky smile and just went, it's Tourette's. And she looked back at me and she, without even taking a breath she said, it's not Tourette's, Paul. It's you being an asshole. And she was right.

[Jordan James]

I was gonna say, should we have one more break and then we can talk about our favorite neurodivergent movie.

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Not with that attitude.

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[Simon Scott]

Welcome back to the neurodivergent Experience. We've been having a conversation with Paul Stanworth. And I don't know about you listeners, but I've learned quite a few things about myself today, and I'm sure, Jordan, you have as well. But one of the timely things about this conversation, Paul, is I think a lot of people around the world are currently getting an education around Tourette's, rightly so, with the release of the film, I swear. And Jordan, this, this film means the world to you, doesn't it?

[Jordan James]

Yeah, absolutely. I mean, from the, the first moment I saw, just everything about it just spoke to me so deeply. And I was. Even though I, I have Tourette's, and I, I think that obviously the, the times where John in the movie, when he's a kid, that's what really spoke to me was. Because obviously that's when my Tourette's was at its worst. But what spoke to me as him as an adult was, you know, how he let his neurodivergent disabilities, he didn't let it define him and how the people around him became accepting of him and made him feel good about himself. And therefore then he could then pay it forward and start helping other people feel good about themselves. And that is literally my journey. You know, I met my wife when I was very young, and she was the only person that didn't think I was a total freaking lunatic. She saw the real me past, you know, my trauma and, and, and my, my. Trying to get over my, my brother's death and, and all the wall that I'd put up and, and how angry and aggressive I was. You know, there's scenes where, where Paul, you know, you're Paul. Where John gets arrested. And that happened to me. You know, I was, I was in a lot of trouble a lot of the times because of fighting and, and, and it was things that I didn't want to do, but I was just so angry at the world and I was so messed up and, and I was just so misunderstood that, you know, no one gave me the time of day. And then Sylvia gave me the time of day and she made me feel good about myself, she made me love myself. And then I wanted to pass that on and that's why I'm out here advocating and you know, just like John Davison, I, I was doing school talks and teaching people photography and going and doing talks for the NHS and for schools and, and, and colleges and universities and events and I saw so much in common with, with this man. And I don't give myself a lot of credit, I joke about it a lot because I, I, I find it hard to say anything good about myself unless it's come with a sense of humor. So I'll be like, oh yeah, no, I'm really great and oh yeah, I'm really gorgeous. And like, I don't mean it like it's just words because I'm projecting this. Like I'm just playing around and I think I've said this before. The only thing I can genuinely say is I'm really fucking good at photography. I love you, Paul. Thank you.

[Paul Stanworth]

I love your photos. You're gonna have to teach me how to use my camera. But that's a chat for another day.

[Jordan James]

Yeah, we're doing that. We're gonna go out and take some pictures. But yeah, like that's the only thing that I can really genuinely. All the other stuff I say, it's just me. It's like stupid bravado. Even if, even if other people have said it to me, even if I think that it might be true, I could never feel confident about it. And I think what watching that film did for me is made me go, well, I've done everything that he's done. Like, I've done the things he's done. And he won an MBE for it, quite rightly, like it's an incredible achievement. So if he is, is that revered for doing the things, maybe, maybe I'm, maybe I did all right. Maybe the things I did were, were actually good. So he made me feel good about myself because I did good things, which is, it's crazy that it takes that for me to go, oh, I did a good thing. Well done.

[Paul Stanworth]

It's affirming, isn't it? Because you obviously, you know, when you have issues with yourself, you crippled by self doubt. It's a classic trait of a musician, Scott Simon, and I know that as well. So you do need that reassurance And I think the film is quite affirming of the fact that if you've done any amount of activity to raise awareness or just to help people feel like they're not alone, then you will have done good things and there'll be people out there who you don't even realize will remember you and they'll remember you for the right reasons.

[Simon Scott]

What was, what was your first reaction watching? I swear, Paul.

[Paul Stanworth]

Oh, wow. I was lucky enough to be invited to the London premiere of it. So the cast were there and it was a room full of people with Tourette's and the professional people who worked in that field. It was incredible because people felt comfortable to tick freely as well. It was almost like the whole movie was an audience participation thing. Because Tourette's, I say every, every case of Tourette's is different. But one thing I think we all have in common is we, we react to the environment around us, the sights and the sounds we bounce off them. If other people tick, then it can trigger ticks in other people. So people watching the screen, it was a, I compared it almost with the Rocky Horror Show. The audience participation, that's exactly what this

[Jordan James]

guy did, I was thinking.

[Paul Stanworth]

But it was brilliant though because everybody felt free to just be themselves in that show. And it, I went to see it with my wife in the cinema in Horsham a couple of weeks after that and it was completely different. There was. People didn't quite know how to take it, but that room I was in was, you know, we were just all like minded people. It's fantastic. It overwhelmed me, I have to say. And again, in a, in a great way, I, I absolutely adore the film. But my first, you asked me what was my first reaction to it. It was one of stunned silence, shaking, emotional. I stood up at the end of the film and there's a guy sitting next to me and we've been chatting before the film because we were in there a little bit before, having a glass of wine and stuff like that and chatting, got to know each other a little. And he said to me, oh, what do you think of that? And I would just went, I think I need a moment. And I just, I, I again, I, I locked up. I was overwhelmed. I froze and I turned round and there was a lady that I know from Tourette's Action, the national charity, she saw me, she realized that I was just not knowing how to react. And she just came up and gave me a hug and I cried and let that breath out. You know, the breath we're talking about that. I was holding it, my chest was tense and tight. She hugged me and then. Thank you. Wipe my face. Got me makeup straight. I wasn't. And I was able to talk then, but for that moment I was, I could, I didn't know how to react. It was just completely overwhelming though. Like you mentioned, there's the film. There's so many experiences we can identify with as you watch that film. As once again, every case is different, but we all experience a lot of the same compulsions or level of compulsion, should I say. The symptoms may be different, but the underlying cause and, and that's what I think about when you've got Tourette's and you watch other people with Tourette's, you, you experience it differently to people who haven't got Tourette's. I think people who haven't got Tourette's, they, it's a two dimensional experience. They see and hear the ticks. If you've got Tourette's and you see somebody ticking, it's three dimensional because you see here and feel them. You feel the build up. You understand the tension. You totally get when the outburst is and. But you realize what has happened before it and you know what happens after it. People who don't have Tourette's, they just hear that moment or see that moment. We sense what is going on before it and afterwards, you know that post tic relief that you get. So it's a more three dimensional experience. And I think it's absolute credit to the actors concerned, Robert Aramao and Scott Ellis Watson, who played John, that they captured that and made us feel their ticks as well as see and hear them. So, you know, I said that's the other thing I said right at the time. I said that film deserves to win awards. And yeah, they did end up going on and winning baftas. So, so does that.

[Jordan James]

First. It's the first hot topic we did. After I watched the movie, I was with the, the, the Oscars were announced and we did an episode where I was like, I'm pissed off because Robert Aramayo isn't up for an Oscar and then he's up for a bafta. And I'm like, good. And then when he won it, the first person, Scotty messaged me straight away. He's like, he's won it. And I was like, told ya. Yeah, told you. He's good. He's so good.

[Paul Stanworth]

But the, the only reason they're not in the Oscars this year is because the film hadn't been Released in America. It's released later this month, so they should be next year.

[Jordan James]

Oh, okay. I didn't know that

[Simon Scott]

they'd just been snubbed, so fingers crossed.

[Paul Stanworth]

No, no, it's released in America, I believe around about the 24th, 25th of this month, I think. And so, yeah, there's still chance they could get Oscars and they blooming deserve them.

[Jordan James]

Oh, yeah, because I, I know that when, when I've done posts about it, people in Australia, got supporters in Australia, they, They've been like, oh, no, it's coming out this month.

[Paul Stanworth]

Yeah.

[Jordan James]

So I think, yeah, it's going global, which is funny because we've already got on Netflix and I've watched it like five times now. I'm just like, yay. But yeah, the first thing I, I was thought, as soon as I finished it, I just started messaging everyone I knew. I was like, this movie, this movie. Oh my God, this movie. And I straight away I texted Scotty and I was like, dude, you gotta watch this movie. But it took you a while to get there, didn't it, Scotty?

[Simon Scott]

Well, yeah, demand avoidance. Took me a while to watch it. But I will say, Paul, it probably watched me. It took me about four hours to watch that film.

[Paul Stanworth]

Right.

[Simon Scott]

Because there was like three or four moments where I had to pause and I just wept.

[Paul Stanworth]

Yeah, yeah, yeah.

[Simon Scott]

I was just like, just seeing my own. It's weird because, like so much of my experience, like the past four or five years has been around autism and ADHD and ocd. And when I got diagnosed, they went, and we see Tourette's traits. And at the time, it just sort of. There was so much going on that it didn't even really occur to me, Tourette. So I was just like, oh, yes, I'm collecting everything today. I'll just throw that in the pile. And didn't really give it that much attention until I watched, I swear. And I found myself doing tics that I did as a kid that I hadn't done for 25 years, Paul, watching that film. And it was like I connected with a deep part of myself that I'd sort of put in a box for a really long time. And I hope anybody that's listening to this feels that with this conversation, but also from the film as well in the. It made me feel really human.

[Paul Stanworth]

No, this is. It's absolutely brilliant in that way. And I've actually, most of the people I know that have seen it been very, very positive about it. I've only had a couple of sort of Negative reactions. And they've actually been from people close to me who actually in, in their defense were trying to speak up for me because what they've said, because I don't have coprolalia, which is the swearing tics and over the years there's certain feelings among certain people's that, that coprolalia is what people think Tourette's is. If you mentioned Tourette's, they think, oh, but you can't.

[Simon Scott]

I used to be in that camp.

[Jordan James]

Can I just interrupt you very quickly? I've been sitting there with a question on my lips waiting to ask you and I can't believe that you're bringing this up because this is exactly what I wanted to ask you. Is that as positive as we are about this movie, do you feel negative at all? That it doesn't represent anyone else's version of Tourette's and it only represents Coppola? Is that a negative at all?

[Paul Stanworth]

No, I don't think it is at all because I don't think it actually does just showcase coprolalia. I think John's personal case is so complex that if you're ever going to choose one person to do a biopic on, he's the man who will represent a wide range of people with Tourette's. Because if you watch that film closely, he doesn't just wander around shouting out swear words.

[Jordan James]

Oh no, absolutely not.

[Paul Stanworth]

He licks lamp posts, he shouts, I've got two aces and stuff when he's playing cards. I did a great accent there. Perhaps Jones, the director, I've been in touch with him recently. If you want me to audition sometime, then no, anyhow. But I think that he, John's case is just so wide ranging that. And, and as we've all just mentioned in this conversation, we felt things whilst watching that film. We felt, yeah, he's doing stuff that we do. We just don't do the shouting out, the swearing. But a lot of the stuff that he's doing and the stuff that we can see and feel is going on and you know, the, the, the stuff that connects us all with Tourette's, I think it was covered sufficiently in the film. Plus, at the end of the day, it's a one person's life story and you can't get hold of somebody's life and change it just to suit a narrative. You, you're either going to do an accurate description of his life story or not. Fortunately, John's life story does reach out across the board to a lot of people and just about, I think Just about everybody with Tourette's will watch that film and identify with at least parts of it, even if they don't have exactly the same symptoms as him. But I think also one thing I mentioned to these two guys, one of them, I'll say one of them was my dad. And my dad was sticking up for me. He was caring about me. Who says they haven't really expressed your case of Tourette's in. And I said, well, they have, to be honest. They've. He's had motor ticks and other vocal tics that aren't the spectacular swearing things, the things that got him into trouble. And that is throughout the film, he's constantly ticking. And that's. And now I've got a tool. And if in the past, if somebody said to me, you can't have Tourette's because you don't shout out swear words, I've had to have a long conversation and explain it. You know, I just touched on the breathing rituals earlier in this podcast. I could talk for hours about that, and sometimes I've had to. You know, when I was trying to get it across to my employers at the police when I was young, oh, months and months, we spoke about it, and they were questioning and questioning and trying to say, where does your personality start and where does your illness end? And vice versa. It was such a rigmarole. Now, I swear, has given me a tool when people say to me, what is your Tourette's like then? Because you don't shout out swear words. I said, well, watch, I swear and ignore the swear words, because that's what I've got. Basically, all the other stuff that John's doing, I identify with that. I'm sure you do, too. So I think it covers enough. And as I say, you can't just take a real human being and edit his life story if you want to do an accurate portrayal of what he's been through. And I think Kirk Jones, the director, has done. Done an incredible job of it and got a lot into that film that we can all identify with and use as a tool for our. To our advantage when trying to explain it to other people.

[Jordan James]

Yeah, I mean, that's why I wanted to ask that question, because I knew you. I knew you'd be the person that would answer it beautifully, because there will be people who will say that, because especially with neurodivergence, there was so many, many stereotypes for different conditions. You know, adhd, I can't concentrate. Oh, dyslexia can't spell. Oh, autism can't look you in the eye. And it's like that. That those things may be true for some of us, maybe true for not some of us, but it doesn't mean that we're not autistic, adhd, dyslexic, Tourette's. It just means we are in different ways. And I think what I loved about the movie is it's getting people to ask more questions. So it's not so they can see that. It's not just the swearing that you said. It's so much more. And it also brings a conversation start about ocd, which is definitely something that I am really sick of, people not understanding ocd and just go, oh, that's a cleaning thing. Oh, my God.

[Simon Scott]

I don't clean.

[Jordan James]

I wish it was a cleaning thing. My wife would freaking love me. It's not a cleaning thing for me. For me, it's. If. If I don't do this maybe my house will collapse thing. And it's got nothing to do with cleaning. It could be biting myself, which is not great, but it's. It is. It's different for everyone. And I think you're absolutely right, Paul. It showcases that so well. And I think that it's. It's like a lot of people could say, oh, it's like a Tourette's version of Rain Man. And it's like, you are wrong. You're wrong. It is not that. What it is is. It's. It's the shining example of going forward. What I want to see for every disability representation, especially when it comes to invisible disabilities, that's the representation. That's the.

[Paul Stanworth]

That.

[Jordan James]

That's what we need. That's the gold standard. And that's what I want to see for going forward is real people, real lives, real experiences showcased in a positive and negative way show both sides of that coin.

[Paul Stanworth]

I think it really helped that John was very involved in the making of the film as well. And.

[Jordan James]

Yeah, that's what we know nothing about us without us.

[Paul Stanworth]

Yeah. And Kirk Jones, the director, was very attentive to him and was, we should

[Jordan James]

get him to do all neurodivergent movies. He needs to do one on autism.

[Paul Stanworth]

I was thinking exactly that.

[Jordan James]

We need an autism one, an ADHD one, and a dyslexic one.

[Paul Stanworth]

I'm gonna. I'll email Kirk later and we'll commission him. He has to write. He has to do, like, a. Eventually be like the Star wars franchise, right?

[Jordan James]

Yeah. Tell him to read my book and do the story, but don't. Don't Tell anyone it was me because I don't want to be famous like John Davidson is famous. I don't want that. So call me Jeff Bridges. That's not a name that exists.

[Simon Scott]

Well, Paul, everything that you've mentioned there about, I swear, is what. What we try and do here. I'm a big believer in don't tell them, show them. And this podcast talks about lived experiences for positive and negative, for all neurodivergent people. And having this conversation about Tourette's today, I really hope any of our listeners will come away and take something from it. But if there's anybody that's listening to this poll like I was, where they have an autism diagnosis and Tourette's is just thrown into the pile and they think nothing of it and they're trying to learn more or understand themselves, what advice would you give to that person?

[Paul Stanworth]

Oh, oh, I don't know. You're making me sound like some kind of guru now.

[Jordan James]

You are the guru.

[Paul Stanworth]

I don't know. I just thought I was some sort of music diva, but I'm a guru now. I. That's a really. That's that sort of silence me a little bit. I said, I'm not good on advice. Apart from you have to sort of have an open mind. I mean, when I was diagnosed, there was talk about Tourette's and ocd. And at the initial point I was thinking, no, I can't have Tourette's syndrome. Partly because I was vaguely aware of the John's Not Mad documentary from years ago that my psychotherapist referred me to. And I thought, no, I can't have that, so I must have ocd. And then they said, well, we think you probably got ocd, but you might have a bit of Tourette's as well. And then I went and they said, you probably got Tourette's and a bit of ocd. And I thought you just got to keep an open mind and remember that if you've got one condition, it's quite likely that you'll have something else going on as well. And the best advice I was given when I was going through my diagnosis was to educate myself on it, to read up about it. And I actually wrote about it. I started writing a book, but as usual with things where I have to sit still, it didn't turn into a book. It was a booklet at best. But I still managed to write down a lot of interesting information. I sent it through to Jordan a couple of weeks ago. I've still got it. I read it myself. From time to time. But. But that talks a little bit about what I went through. I think learning about your condition and yourself is very important. It was the first part of my recommended treatment, before they even talked about medication was to educate myself on it, learn about it. It's actually quite fascinating. And I also then learn that I could use it. I know some people are not as lucky as me. I've been able to channel that energy, use it to my advantage. I get a great deal of pleasure out playing music, although I have to play a lot to make a living. So I get aches and pains from not only the tics but from playing music. But it doesn't stop me because I've still managed to find out the person I am and do something I love. So the best bit of advice I can give you is be open minded and learn about it. Whatever you've got going on, read up on it if you can find, ask questions, always ask questions and just raise your own awareness. We talk about raising awareness for other people. We need to be aware of ourselves before we can do any of that.

[Simon Scott]

I think brilliant advice that Paul. Thank you so much for that. Well, I've loved getting to know you, Paul, and having this conversation

[Paul Stanworth]

at some point.

[Simon Scott]

I would love that. I will, I will, I will hold you to that. And yeah, anybody that's listening to this, please go and check out Paul stammered. Especially if you're in the Horsham area. He's constantly out and about gigging so please go and check out his, his stuff. I'll link your Facebook page and if

[Paul Stanworth]

you do come and say hello and let me know you've seen this and you ever need a chat, I'll be happy to chat.

[Simon Scott]

Oh, what an absolute legend. Well, Jordan, that's been our episode for this week. We've did an interview. Have fun. We managed to finally get one. Tie people down.

[Jordan James]

Yes.

[Paul Stanworth]

Yeah. Considering my ankles in plaster, I wasn't going anywhere, was I?

[Jordan James]

No.

[Simon Scott]

Well, there you go. We've just got to cause grievous bodily harm to our potential guests.

[Jordan James]

If you don't come back. I'll get the other one, mate. All you guests that are on the hook, I'll do you, you're next.

[Simon Scott]

Yeah, well this has been your nearest

[Paul Stanworth]

virgin because Jordan told me to say it as been.

[Jordan James]

Yeah, good. That's right, he's doing as he's told.

[Simon Scott]

Well, this has been the neurodivergent experience talking with Paul Stanworth and this has been one of our first episodes about Tourette's. It Definitely won't be the last. And if you've enjoyed it, please check out other episodes. We've got a lot out there in the neurodivergent Experience. Well, be kind to yourself out there. Take some good advice. Be lucky if you can be. We'll chat to you next week.

[Jordan James]

But there won't be a Hot Topic.

[Simon Scott]

Oh, no, there won't be. I'm very tired and I need a couple of weeks off to go and work on some things. So it'll be back.

[Jordan James]

We're gonna do the normal episodes, but we're gonna take a couple of weeks away from the Hot Topic just to gather our spoons and eventually we will be on the network. About the network, all to come.

[Simon Scott]

Yes. So I am the one of the co founders of the Autistic Culture Podcast Network and again, it's going along my method of let's not tell them, let's show them. So we are creating a huge variety of podcasts regarding all sorts of things within the spectrum and not just that as well. We've got shows that are discussing menopause, the scientific model, even special interests. We've got a show about collecting fish, which is such a cool little show and has made me actually want to go and get a fish tank. So please support the network if you can. We will soon be on there and we're coming. Yeah, lots more to come, guys. Lots of exciting news. Really excited to share it with you. I've only been working on it for 10 months and I haven't slept since, so. Yeah. All right, thank you everyone. Bye, everybody, nightly.

[Jordan James]

Bye.

[Simon Scott]

Thanks for tuning in to the neurodivergent Experience. We hope today's episode sparked something for you. Whether it's a new idea, a bit of validation, or just a moment of connection. Remember, new episodes are every week, so be sure to join us for the next one for more conversations and insights into the neurodivergent Experience. If you've enjoyed this podcast, help us grow. You can do that by rating and reviewing this show. Your support makes a huge difference in helping us reach more people who could better benefit from these conversations. You can connect with us on social media, find us on Instagram, Facebook, Tick Tock. Just search for the neurodivergent experience. Thank you again for listening and until next time, take care of yourself. You're not alone in this journey.

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