When Carly Horn’s seven-year-old son Acer was diagnosed with Tourette’s syndrome at the start of May, she was told there was nothing more the NHS could do to help because services for the condition, which include cognitive therapy, are not available in Eden.
Tourette’s is a complex neurological condition that causes people to make involuntary movements and sounds called tics. Common motor tics can vary from eye blinking to shoulder shrugging and abdominal tensing, while common vocal tics can include whistling, coughing and making animal sounds.
There are more complex tics such as coprolalia, which causes involuntary swearing, and copropraxia, which involves making obscene movements or gestures and feeling the need to touch objects and other people. However, this does not affect everyone with the condition.
It is a common misconception that indecent gestures and swearing is a main symptom of the syndrome. According to the NHS, only one in 10 sufferers have coprolalia.
People with Tourette’s also often experience co-occurring conditions such as OCD and ADHD.
Acer does suffer from coprolalia and copropraxia, and 34-year-old Carly, who lives at Kirkby Thore, said these conditions cause prejudice towards people with Tourette’s.
“We need to make the public more aware and try to eradicate the stigma,” she said. “I want to stress that these tics are involuntary. Trying to supress a tic is like trying not to blink for a long period of time — you eventually blink and those with Tourette’s eventually tic.
“I am trying to raise awareness and ask people to be kind and accepting. I understand it is difficult to see what is classed as unacceptable behaviour, but it is more difficult for those with Tourette’s who cannot help it.”
The condition has no cure and Tourette’s Action — a support and research charity that helps those with the condition — estimates there are more than 300,000 children and adults living with it in the UK.
With no guidance after the diagnosis, Carly turned to the charity. She said: “They have been so helpful, even providing schools with presentations and posters.
“Without them, I would be walking around blindfolded with this.”
Tourette’s Action set up Tourette’s Awareness Month, which CEO of the charity, Emma McNally, described as a chance to “foster an inclusive atmosphere where individuals with the condition receive proper medical, educational, and employment support without facing ostracism or alienation”.
Between May 15 and June 15, the charity is running a campaign to show the reality of Tourette’s, from having simple tics to being in physical pain.
“(After his diagnosis) I was after some sort of support to help me at least explain to Acer what he has. It’s difficult to explain something like that and to explain it to others,” added Carly.
Another worry for the Horn family is bullying. The NHS website says: “Children with Tourette’s syndrome may be at risk of bullying because their tics might single them out,” and although Carly said Acer’s current primary school is “fantastic” about his condition, she is concerned about what it might be like once he moves to secondary school.
“I do worry about secondary school and about him being bullied, but I’m just going to have to try and prepare him the best I can,” she said. “We will deal with it as we go along.”
She added: “I think it would massively help to put something about Tourette’s in PSHE lessons (at secondary school) because that might reduce bullying, as people would be aware and maybe wouldn’t laugh as much and make a joke of it.”
For Acer, who loves motorbikes and has a strong interest in historical topics, such as Egypt, the Titanic and the Stone Age, the condition is not a burden at the moment, and he is enjoying his childhood to the full along with his three brothers and his sister.
Carly is using Tourette’s Awareness Month to spread awareness of her son’s condition to those around her in the hope of getting people talking and making them more aware.
She said: “Tourette’s is a very misunderstood and complex syndrome. A little education is needed to make it more understood and socially accepted like autism and ADHD. With awareness comes acceptance.”
Carly encouraged anyone who has the condition or wants to ask any questions about Tourette’s to email her at touretteseden@gmail.com or visit www.tourettes-action.org.uk.
