Schoolgirl with Tourette's says more need to understand as number diagnosed rises dramatically

A schoolgirl who has Tourette's Syndrome says more people need to learn what it is like to have tics in order to support those diagnosed with the condition.

Faith Adams, nine, developed several tics after lockdown ended and she returned to school and now wears ear defenders to dampen sounds that trigger them.

Her main tic - an involuntary sound or movement - is vocal, and sounds like a scream, and can be set off by multiple noises.

Faith, from Ashton-Under-Lyne, said: "Sometimes I just do them randomly but sometimes it’s loud noises like the hoover - I don't like it, the microwave - I don't like it, planes - I don't like them and sometimes the loud cars that go down the street. They annoy me."

But the schoolgirl says she wishes more people would understand what it is like to have a tic.

She said: "Some people don't understand and it makes me all upset and sometimes I try and hold in my tics and that makes me worse and then when people ask me to stop - it makes me do it even more."

Faith's mum Sam Adams noticed her daughter had developed a tic shortly after she had returned to school after lockdown.

Sam said: "At first when she got a tic I thought it was a cough, then it changed to like a dog bark but it was quite an aggressive one and that massively impacted her because of hurting her jaw and her throat and now the main one is a screaming tic."Sam thinks anxiety and stress trigger Faith's tics. She also has ADHD.

Sam said: "Her screaming tic is when she is anxious and we’ve noticed how she's affected by noises - even things like the beeping sound of getting cash out of a cash machine or the beeping sound at a pelican crossing.

"It's hard for us because it leads to a tic attack and she will scream constantly and she'll be doubled over holding her stomach because of the power of the tics."

Faith’s tics have lessened since she started being homeschooled. The family have also attended a new support group set up in Tameside for young people who suffer from tics.

It comes as those diagnosed with the condition in the North West has risen sharply, with the condition affecting more than 300,000 people in the UK.

Since the start of the pandemic paediatricians and child mental health practitioners have recorded a stark increase in the prevalence of tics among children and teenagers.

It has led to the NHS Trust creating a support group for parents and young people to try and cut down on waiting times for treatment and help families living with the condition.

Pennine Care NHS Foundation Trust’s Tameside and Glossop Child and Adolescent Mental Health Service (CAMHS) set up ‘What makes you tic’ to deliver information and coping strategies to young people with their families.

What is Tourette's Syndrome?

• Tourette’s Syndrome  is a neurological condition that causes a person to make involuntary sounds and movements called tics

• It affects one school child in every hundred and is more common among boys.

• The cause is unknown but it can sometimes be diagnosed alongside ADHD, Obsessive Compulsive Disorder or learning difficulties

Tristan Fuller, 11, and has just started secondary school, his tics started when he was in Year Three.

He says: "It’s like a compulsion - you need to do it.

"Sometimes my tics are verbal and sometimes, they're arms movements and hands. I can't just sit still and not move or make noise or anything so it’s quite tiring because it is 24/7."

Tristan’s tics are triggered by certain noises, excitement or nerves.

He said: "We were at the airport and I hadn't flown for a while because we hadn't been on holiday and I was ticking more because I was nervous to go on a plane again."

He has also learnt various coping strategies at the support group.

"If I want to make a noise sometimes chewing on gum helps instead of shouting something out," he added. "It keeps my mouth busy or doing a certain breathing exercise can help."

Martin Fuller, Tristan's dad, added: "Tristan’s sat next to me for longer today than he has done in months because he will hear the noise of my breathing and that will bring on his tics and he will have to move around.

"Sensory things, particularly things that might irritate him like noises or the touch or feel of a certain thing' they can all bring on his tics anyway so quite often he will have a tic and it's hard for anyone to perceive what's caused it unless you directly ask him."

Louise Cowen, a children and young people’s psychological wellbeing practitioner, was one of the staff members who formed the group.

She said: “We’d seen an increase in referrals for tic presentations across Tameside and Glossop and realised there was no direct service for intervention, so we developed a programme for tics and Tourette’s.

"We’ve also adjusted the tic pathway so that most people with presentations are more easily accepted for this group intervention, rather than having to wait for things to get more severe.

“We decided a group would provide a safe and confidential space, improve access, reachmore families and to allow them to see that they are not alone. Keeping it to less than tenindividuals per group proved to reduce anxieties and promote a confidence for both parentand child to speak.

“Involving parents was an important step to help them support their young people at home and within other environments such as school/the outside world. Interestingly some of theparents also experience tics and have never received support, so the group has also beendirectly beneficial for parents too.”

Who can I or someone I know contact for help?

Tourettes Action is the UK’s leading support and research charity for people with Tourette's Syndrome (TS) and their families. They want people with TS to receive the practical support and social acceptance they need to help them live their lives to the full. Their helpline is 0300 777 8427. 

NHS Choices has comprehensive help & information from NHS Choices including links to external sites.

Tourettes Hero is a place to celebrate the humour and creativity of Tourettes. It’s not about mocking or commiserating - it’s about reclaiming the most frequently misunderstood syndrome on the planet.