Tourette’s Syndrome is a condition that often creates chaotic lives, further complicated by other issues such as autism, OCD, attention difficulties, dyslexia and/or dyspraxia.

Add to this melting pot of neurological conditions, too many people who fail to adapt to, identify or even acknowledge someone has Tourette’s. On top of this, is the social stigma of Tourette’s, driving people into seclusion.

With all these challenges, it’s understandable that this group feels marginalised and misunderstood. The vision for this project, was to find a way for young people with Tourette’s to tell their incredible stories and a way to share them.

Funded by a Creative Lives micro-commission through our Get Creative strand, this project aimed to help young people in with Tourette’s express themselves through storytelling. In partnership with Tourette Scotland, Nigel Ashworth worked with the group as a volunteer - and then used the grant to turn their words into a short scripted film. 

In over 18 hours of Zoom meetings, 11 young people from across Scotland talked about how their Tourette’s felt, how they were mistreated at school, the unseen explosions once they got back home and their constant intrusive thoughts.

"They shared things they’d never spoken about before, even to their parents," says Nigel. "They reflected on their lives, their families and their tics in ways they hadn’t expressed before."

By using group composition, they could just talk, guided by simple questions. "This wasn’t about their symptoms or their support needs, they weren’t talking to a doctor or social worker," he explains. "We focussed on what Tourette’s felt like inside and the impact of those around them."

The Zoom conversations generated over 30,000 words of notes, which were shifted and sorted to find common experiences and exceptional examples to build the story from. Nigel shared an outline of the story with the group, to see if it reflected their lives. He  used a lot of extreme incidents and blended them together for dramatic impact - was it too much? "Actually," says Nigel, "the families said it represented a fairly typical day for them."

A first draft of the script was read by some members of the group, giving more feedback for the next draft which was then used for the staged reading. In just one day, four professional actors rehearsed the script and were filmed. Due to Covid restrictions, and with the young people based across Scotland, a video was the only way to share the story back to them.

The short film cleverly makes Tourette's itself another character - constantly interrupting the main character as he attempts to go about his day. You can view it here:

The young people who attended the workshops, fed into and helped shape the script found viewing the film a powerful experience. Here are some of their thoughts:

"I could feel the pain of the characters. It evoked so many feelings, it was exhausting. It’s nice to know that people will see this."

"It's 100% accurate, a true reflection of my whole experience with Tourette's, no matter where you are, it’s 100% what happens. I hope people learn from it."

It was like looking at my day in the mirror and it playing back to me.

"It was like I was reliving all these memories. It reminded me how hard the journey has been to get to where I am now."

Nigel and the young people hope that this story will give people with Tourette’s a new way to see their condition. Also a new vocabulary to talk about living with it, one that isn’t focussed on what they do but turns the spotlight out to the rest of society.

As Nigel says:

What the young people felt most strongly about was that Tourette’s wasn’t their biggest problem, it was how the rest of the world treats them.

To find out more about the 'Living With You' storytelling project and the team involved, visit