06 Apr 2026
The BAFTA-winning Netflix film I Swear has cast new light on the misunderstood and underrepresented condition Tourette syndrome.
Charity Tourette’s Action UK defines Tourette syndrome as “a genetically determined neurological condition, the key features of which are tics, involuntary and uncontrollable sounds and movements”.
They add that the condition is complex and that many people with it will also experience co-occurring features and other conditions.
I hadn’t come across it since I was in Brownies in the eighties. We would be in the middle of an activity and one of the girls attending would twitch her head and shout out a word which had definitely not been approved by Brown Owl.
Then one day she didn’t turn up. My mum said that it was because other parents had complained and that even though she couldn’t help it, it was thought inappropriate for her to swear so she had been banned. Even then I thought it was unfair.
That girl had a form of Tourette’s that is the same as that portrayed in the Netflix drama and involves swearing. Starring Robert Aramayo, the film is based on the true life story of John Davidson, a Scottish man with severe Tourette syndrome who was the subject of the 1989 television documentary John’s Not Mad.
Coprolalia affects around 10 per cent of individuals who have Tourette’s.
The simple category of TS can involve physical tics such as eye blinking, eye rolling, grimacing, shoulder shrugging, limb and head jerking or abdominal tensing. Vocal tics can include whistling, throat clearing, sniffing, coughing, tongue clicking, grunting and animal sounds.
The complex category can involve jumping, twirling, obscene movements or gestures – known as copropraxia – or repeating other people’s gestures – known as echopraxia.
I sat down with St Albans mum Sally Taylor*, who has children with Tourette’s, to find out more about living with the condition.
She revealed how she first noticed that her children might have Tourette’s: “My daughter, Sarah*, started blinking excessively, aged four, and doing a couple of other little twitchy face movements.
“When I asked a few friends about it they all said she would grow out of it, and she just didn’t.
“So I took her to the doctor, I had done a little bit of research, and I didn’t want her to feel something was ‘wrong’ with her, so I wrote a letter which I slid across the desk to the doctor, got her to read it, and then she talked back to me.”
She was already wondering if it could be Tourette’s because she had researched the condition online but the GP dismissed her suspicions, saying that girls don’t have Tourette syndrome, only boys.
That was her first experience with a medical professional but as things progressed she went back for a second opinion and Sarah was eventually referred to a paediatrician.
Sally said: “I think she was about six when she was diagnosed. When my son Tom* started presenting with similar tics, I was much more aware and so there was no question, I got him to the paediatrician as well, and he was also diagnosed.”
She explained that she spoke to her children about the “little habits” that they had at the time, explaining they were because they had a condition.
She said that once they knew what was causing it – and that nothing was wrong – they understood that it just meant their brains work slightly differently and explained what to do if somebody asked them about it, such as a teacher.
“That’s how I kind of presented it to them.” she said. She is smiling and quite matter of fact about it but I can see it’s not easy for her to talk about.
Is there any known cause of Tourette’s?
“So, I was told at the time that for about 85 per cent of people it is hereditary and the other 15 per cent is not. However, more recently their paediatrician has told me that more and more people are presenting with Tourette’s.
“We also did a lot of research, and it seems that the Americans are way ahead of us in terms of research.
“There are studies that suggest that, or are looking into the theory that it could be a response to an infection. Strep B infections can cause inflammation in the brain. They are more open to the fact that it could be environmental and the result of infection.”
It’s evident she’s a brilliant mum and has a great relationship with her children. Do they come home and share concerns or moments from their day when they have been impacted by their condition?
“They wouldn’t ever come home and tell me about anything that happened at school, but I would be seeing it at home. And I would obviously be going into school.
“When they were at primary school, you go into school a lot more for assemblies and things like that. And you can see them doing it.
“I talked to the teachers. I kept it really low key because I didn’t want them to feel there was anything wrong with them. And at primary school, kids are a lot more oblivious to things like that anyway.”
“But there was an age where Sarah – she was probably about 10 – became very upset and opened up to us. She said it did bother her, and made her feel weird, and asked us why was she such a freak? (Her words).”
Sally, who lives near Clarence Park, said their peers had started to ask her why she did a particular thing. And she told me that she didn’t know what to say apart from that she had a condition called Tourette’s.
I asked what sort of ways it had presented: “So the blinking was the very, very early thing. That passed very soon. Tourette’s is clinically diagnosed with having both motor and vocal tics for over one year.
“My children have what’s known as the simple category of TS as they meet the criteria for having simple motor tics and vocal tics and then some children and adults have what’s known as complex TS. But I think the term ‘simple’ kind of downplays it in a way.
“With both of my children, their vocal tics were less than their motor tics, and the vocal tics would include coughing excessively, clearing their throats, maybe a little bit of clicking, humming, those sorts of things.
“So they can go under the radar, and teachers might just see that as them being annoying or irritating as it is not as obvious. For them, their motor tics were and are the main presenting problem and issue for them. It can also include – and I think people don’t quite realise this – internal physical tics such as clenching of the stomach which can be very painful.”
Her son has to live with a greater impact of the condition than her daughter. It came on more aggressively, she said, and he has experienced it in much higher levels: “My daughter, as I said, has virtually ‘grown out of it’ and doesn’t present with these tics.
“My son, however, has had times when it peaks and troughs, and in the peaks, he had times where it is very obvious.
“If Tom is highly stimulated or stressed, it might be that he almost doesn’t get a break from the tics. He had a neck brace at one point because he put his neck out. It is a harsh condition.”
People are encouraged not to draw attention to tics because it can make it worse. But Sally said there are times where she will say to her children that she can see they are struggling and ask how she can help them.
Her son has a time-out card so that he can leave the classroom if he wants to:
“When he is sitting in a class for a long time, he will suppress his tics as much as he can, and then that can become extremely stressful for him.
“And then he’ll come home and then he can relax and might have really obvious ones.
She adds: “Tom clicks his joints all of the time so he can hurt his joints.
“He has a breathing one right now where he has to hold his breath for a couple of seconds and then release that breath before he can say something. So somebody talking to him will just think he is pausing in between sentences, but that’s a tic.
“But in the same way that tics wax and wane, that will come and go.”
How do the teachers react?
“Sometimes he might just feels like he really needs to get up from his seat and just walk somewhere, just to kind of get some kind of physicality out because he has been suppressing it. And then he could get into trouble for getting up and going to the bin, but actually he’s just trying to do it to cope.
“I’ve always shared information with the schools from day one about Tourette’s. It’s always been on the system that he has it.
“But then when they get to secondary school, for example, not all of the teachers are aware. He’s never really had anything where he has been called out for something that I’ve had to go in about, but I have had to remind the school. I have had conversations with them when he’s struggling, particularly situations where he might have had a supply teacher, for example.
“He can’t handle a really noisy class and do his work because he’s got all of these other things going on and he can’t process it all without getting feeling overwhelmed.
“I think what people don’t quite understand is that what happens with the brain, how it is so exhausting.”
Parents can go online, read books, read the recent studies and then go equipped to a professional if they are concerned about their child. “If they do not give you a sufficient response, go to a different professional,” she warns.
“However, at the end of all of that, a lot of it is just being aware of it.”
What does she think about medication for TS?
“I am part of lots of support groups and I see lots of people try different medications. We decided not to go down that route because sometimes the side effects are not good. So we try and manage in other ways.”
What advice would Sally give to a parent who has recently discovered that their child has Tourette’s?
“As a parent, obviously, ignore it but be available to talk when they want to.
“Once you have got the diagnosis, supported them, asked for help, all of those things.
“You know, you can’t be pointing it out all the time… But let them know that they can talk to you about it whenever they want.
“As I said, sometimes I will be aware they need a calmer environment or I’ve asked them too many questions and I’ll apologise and create a calmer environment.
“And as I said some particular tics…people might not even realise. It is less obvious than coprolalia where a person shouts out swear words or whatever.
Whenever I’ve actually said to people that they have Tourette’s, they seem surprised because a lot of the time most people think that that means you swear all the time.”
She added that a lot of the time professionals aren’t clued up on the condition: “One time my daughter was having an X-ray and the healthcare professional said she needed to keep her head still throughout and I was worried that she wouldn’t be able to do that.
“I said. ‘Just so you are aware, she has Tourette’s,’ and they actually said to my daughter: ‘That’s amazing. My son would love Tourette’s. He’d love to be able to get away with swearing all the time’.
“My daughter was confused and I had to explain to the woman at the medical centre that it’s only a small percentage of people with TS who swear.”
Up to 85 per cent of people with TS have more than just tics. Co-occurring symptoms may include obsessive compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), anger/rages and anxiety.
If somebody thinks maybe their child has Tourette’s, what would Sally advise them to do?: “I’d say they should try and research and find out about it and then approach their GP and then, as I did, speak to the school, see if you can join a support group – they’ve been really useful.”
She said: “I just want people to know more about it. To understand it so they can be helpful and compassionate.
It’s so misunderstood and we can help raise awareness by doing things like I am doing now – talking about it.
“I Swear on Netflix is a really powerful film but Tourette’s doesn’t always involve swearing so that is one misconception.”
Click here to find out more about help and support with Tourette’s.
*All names have been changed.
