'I felt Tourette's would ruin my life, now I teach at Cambridge'

ByLaurence Cawley

East Investigations

Dr Amanda Cole was 15 and sitting in a religious studies class when she experienced a peculiar spasm at the back of throat. She assumed it would pass, but it was a vocal tic and her first known manifestation of her Tourette's syndrome, a condition that causes people to make sudden, repetitive sounds or movements.

"How am I going to have a family? How am I going to have a job?" Cole, 32, remembers asking herself as she lay awake at night after her diagnosis in her 20s at her home on the Debden Estate near Loughton, Essex. "I thought it was going to destroy my life."

Now a married mother-of-one, Cole is an assistant professor in sociolinguistics at Cambridge University, but throughout her academic life she has kept her Tourette's hidden - until now.

Following an incident at this year's Bafta Film Awards ceremony in which a guest shouted out offensive words because of his tics, Cole said she wanted to be open about her condition and allowed the BBC to join her as she began telling colleagues and students.

"I felt so scared of Tourette's," says Cole, who is one of about 300,000 people in the UK living with the condition. "There was no-one I knew that had Tourette's, and I didn't see anyone in the public eye that had Tourette's - and if they did, they were a figure of ridicule.

"The only impression I had of Tourette's was people acting... and they were swearing, and they were shouting, and they were being obnoxious."

As a result, she hid the condition from friends growing up and colleagues by either by suppressing the tics or releasing them when the person she was speaking with looked away.

Even now, Cole says she retains "some residual shame" about her condition and wants to live in a world where people can "tic freely" without embarrassment.

"It's quite liberating telling people, whether it's students or friends because most of the time people are just like 'oh, OK, fine'," says Cole, who is also autistic.

The most recent data from the Higher Education Statistics Agency, external shows out of about 245,000 academic staff working in the UK's institutions, just 70 - or 0.03% - have disclosed a developmental condition that affects motor or cognitive skills.

Experts believe the true number may be far highe, externalr and that many academics with conditions such as Tourette's hide their neurodiversity for fear of repercussions.

Cole's vocal tics tend to include the names of her husband, her son or the family cat or random phrases such as "good night" during the day time.

"I worry a little bit [that] I'm like the palatable face of Tourette's - I don't swear, I don't say anything that is going to be too challenging.

"I think what we just really need as society is an understanding of Tourette's, an understanding of tics and to know that tics aren't what we really think," she says.

The words are merely "a neurological event that we have no control over", she adds.

Emma McNally, the chief executive at Tourette's Action, says many of those with coprolalia end up self-isolating from society.

She adds that many people with Tourette's find people accepting of their condition until they say something that feels as though "it's about them".

"People then take offence even though there's no malice behind it," says McNally.

While Cole and many others with Tourette's have developed often very sophisticated strategies to mask their tics, not everybody can suppress them, McNally says.

But unreleased tics need to come out at some point, Cole says, and storing them up is physically uncomfortable - she describes the sensation as akin to an "itch" or "suppressing a sneeze".

When she is alone, she will then spend time releasing all of those suppressed tics - a process that can take a few minutes.

"I've gone to great lengths at times to hide my Tourette's," she says. "Some people with Tourette's can't suppress at all, and some people can suppress to a lesser or greater degree."

Women, she says, tend to be more adept at "masking" the condition.

The BBC joined Cole in May for her first lecture in which every student was aware of her Tourette's.

"I had no idea until she told us," says linguistic student Tim Morrice. "But I really appreciate her telling us because I think it's really nice to see neurodivergent people in academia because it isn't a thing we see or hear very much."

Fellow student Abbie Lovewell says finding out about Cole's Tourette's made absolutely "no difference" to her or how she views her supervisor.

"I think she's one of the best supervisors that I've had," she adds.

When asked if she would take a magic pill that removed her Tourette's, Cole responds with a firm "no".

"I wouldn't ever want to get rid of my Tourette's because my brain is wired the way my brain is wired, and I like being me and the people that love me, like me being me."

Tourette's, she says, can also offer a selection of "superpowers".

"I really have hyperfocus - something that has been well-documented as part of Tourette's," she says, describing being able to spend hours on a task she has set herself such as research, painting or playing the piano.

"I can really, really focus and be really, really, really productive," she says.

However, there can be disadvantages to Cole's hyperfocus, according to her husband Ed Wellington, such as getting her attention when she is involved in a task or her refusal to stop doing household tasks in spite of the time, once she has begun.

Her tics and her Tourette's in general, however, have never been something the pair have really discussed, he says.

"From when I first met her, I could sort of tell she had something about her - she had real energy and drive," says Wellington. "I didn't know she had Tourette's. I didn't know that for quite some time."

He describes making various small adjustments to prevent Cole being "overwhelmed" by sensory stimuli, such as leaving the room to eat crisps because the crunching sound feels like it is coming through a "megaphone right into her ear".

"If she's feeling really over-stimulated I have to like go around like turning off all the main lights," he says. "I have to Tourette-proof the room for her a bit."

Owing to Tourette's often being genetic, Cole says if her son develops the condition she will encourage to him to "harness" its "huge strengths".

"I know any mother is going to say this, but he is going to be wonderful because he is already wonderful."

When asked what she would say to her frightened 15-year-old self, Cole says: "You're going to be fine, you don't need to be scared, Tourette's is fine.

"I don't feel I've lived my life despite my Tourette's, I feel I've lived my life well with Tourette's and autism. It has really helped me achieve and made me the person I am.

"I think my teenage self would be well happy if she could see me now."