A father from Kent has described how other parents mistakenly believe he is intoxicated during the school run, after enduring years of misdiagnosis before finally being told he has Tourette's syndrome.
Five-year struggle for diagnosis
Frankie Lowe, 30, from Whitstable, was diagnosed with Tourette's last year following a private consultation. For five years, NHS doctors had attributed his involuntary movements and sounds to a trapped nerve or autistic stimming. He recalls experiencing tics from as young as five, but his condition was repeatedly dismissed.
“I was diagnosed at the age of 16 with autism and the specialist believed it could be autistic stimming. It got to the point where I would be going back to the NHS and it wasn't being taken seriously – they said it could be a trapped nerve,” Frankie said.
Stigma on the school run
The assistant landlord says the school run has become a source of anxiety. “When you're lining up to take your child in, I got quite a lot of looks and people moving away from me. I felt I needed to tell the school – I saw the teachers and headteachers to make them aware I have the condition as I was getting quite a lot of looks.”
He added: “I always have that worry that someone's going to call the police thinking I'm being a nuisance. If people see someone swearing and shouting, they might think someone's under the influence of alcohol.”
Daily challenges and family impact
Frankie's tics include coprolalia (involuntary swearing), echolalia (copying sounds and words), shouting, motor tics such as throwing objects, hitting hands and feet, neck jerking, excessive eye blinking, and whistling. He explains that only 5 to 10 percent of people with Tourette's have coprolalia, contrary to popular belief.
Everyday tasks at home are difficult, as his tics cause him to knock his knees against cupboard doors and furniture. He has also had to explain his condition to his six-year-old son, which he describes as “upsetting.”
Raising awareness and supporting others
Frankie is now fundraising to establish a local support group for people with Tourette's. He was inspired by the film 'I Swear', a biographical account of activist John Davidson, and is keen to counter negative portrayals of the condition, such as the BAFTA incident where Davidson involuntarily shouted a racial slur.
“The more people that share it, the more it raises more awareness and support,” Frankie said. He also hopes to fund attendance at TICfest, a dedicated event for those with Tourette's to connect and engage in activities.
Frankie's GoFundMe campaign can be found at: https://www.gofundme.com/f/raise-money-for-children-and-teens-with-ts
