Tourette Syndrome (TS) is not the rarity once thought, to be pigeonholed in a category of rare and curious psychiatric syndromes. Along with its common co-morbidities, TS causes a significant impact on quality of life to a significant number of people in the UK, and throughout the rest of the world.
TS is an inherited neurological condition. Over 300,000 children and adults have TS in the UK. When we say ‘inherited’ that’s not to say the parents will have TS but rather that there may be someone in the family, somewhere on the spectrum of one of the associated neurological conditions. The main symptom of TS are tics – involuntary sounds and movements. Tics can be motor (physical movements), mental and/or vocal.
Upon researching this article, we revisited the BBC documentary, Tourettes: I swear I can't help it. This film circles back with John Davidson, a Scottish caretaker in his 30s, and 15-year-old Greg Storey. We meet them 7 years on from the initial BBC documentary about Tourette Syndrome, The Boy Can't Help It. The program seeks to explore how the two's life experiences compare, in order to highlight that society has perhaps become more aware and inclusive of people with TS and thus made life easier for people with the condition.
But have things really improved? Are we, as a society, more accepting of a condition that has historically been viewed as comedic? A quick search on You Tube for documentaries about TS reveals many outtake titles using adjectives such as: funny, cheeky, hilarious. An indication that perhaps this condition is still, sadly, being laughed at? Are the educational needs of people with TS now being met, enabling young adults to fulfil their potential and move onto employment? And what about mental health, John Davidson shares his loneliness with the viewer, is this still the case with young people who have TS today?
Education, education, education
Tourette Syndrome affects one school child in every hundred and is more common among boys. More than 86% of people with TS also have co-morbid conditions — ADD, ADHD, OCD, anxiety disorders, sensory processing disorder (SPD) and dysgraphia, to name just a few.
“One characteristic that often causes problems in class is non-obscene, socially inappropriate (NOSI) behaviour. This may lead pupils to call out personal remarks about other people’s appearance or behaviours and, occasionally, inappropriately touch themselves or others and make rude gestures. Tics, especially verbal tics, can be auto-suggestible, and so it is not uncommon for classmates to deliberately provoke an outburst.”3
Tics typically start around the age of 6 or 7 and tend to peak around early adolescence. Hormones play a big part in TS. At around the age of 7 or 8 some neurodevelopmental changes seem to take place in children, which is why there can also be a change in tics at around this time and again as a child enters puberty, in the early teenage years. In approximately 50% of cases tics can lessen by adulthood1. So, as you can see, pretty much all of a persons schooling years are greatly impacted by Tourette Syndrome.
“Almost 70% of parents reported that major changes, like starting a new school, moving into a new class, or being tired, made their child’s tics worse.”*
Environmental factors are huge for a child with TS and can be big triggers to their tics. Many children with TS are reported to have sensory issues which will all play a part in the levels of anxiety that they experience, which in turn may trigger certain tics and behaviours. Sensory issues may occur with a change of environment. Changes in rooms, temperature, smell of a room or person, touch of a piece of furniture or stationery, sound of a person’s voice, feel of clothing or a chair they are sitting on are all possible reasons for a noticeable increase in tics.
School wasn't easy for John Davidson, who left education at the age of 15 with no qualifications in the late 80s. By 2009, increased awareness and understanding within the education system meant that things were better for Greg Storey, who was preparing to sit his GCSEs in the 2009 documentary. Greg subsequently went on to complete a degree in VFX concept and design at Staffordshire University.
How can Tourette Syndrome create a barrier to learning?
Compared to children without Tourette Syndrome, children with TS are more likely to:
Have an Individualised Education Plan (IEP);
Have a parent contacted about school problems; and
Not complete their homework.*
TS does not, in itself, affect IQ, in fact the majority of people with Tourette’s are above the average intelligence level, but it can have a huge effect on a child’s ability to learn. Concentration can be hard, co-morbidities such as ADHD can get in the way, as well as the impact that vocal and motor tics have on the learning environment. Add to this, feelings of isolation, loneliness, shame or guilt often experienced by a child with TS and you have the perfect storm beginning to form.
“A range of TS-related difficulties with academic work, and social and emotional well-being in school were reported by young people, parents and staff. Three superordinate themes are described:
TS makes school work more difficult,
Negative response to TS from staff and fellow students and
TS makes it more difficult to manage emotions in school.
The three difficulties most frequently reported by the young people were problems concentrating in class, unhelpful responses by school staff to tics and difficulties with other students such as name-calling and mimicking tics. Additional difficulties reported by more than a quarter of young people related to homework, examinations, writing, anxiety and managing anger in school. Having more severe motor tics was associated with difficulties with reporting homework and handwriting, whereas having more severe phonic tics was associated with reporting unhelpful responses from staff. Young people and parents agreed more strongly with each other than they did with staff regarding school difficulties faced by individuals, and staff generally reported fewer TS-related difficulties.”2
It’s really important schools work hard to help remove these barriers to learning that a child may face and put strategies in place to help them have full access to the curriculum and reach their full potential. Tourettes Action has a document to help both pupils with Tourette’s and their teachers.
Having Tourette Syndrome does not prevent you from fulfilling your career aspirations. Many people with TS have successful careers and are able to sustain employment as demonstrated by John in the BBC documentary. John has happily worked in the same job, as a caretaker and youth worker for 19 years. However, for some people with TS, employment may be an issue as symptoms can make it difficult to work regular hours or in your preferred field. Sometimes it is necessary for an employer to know if their employee has TS, so that practical solutions can be created in the workplace to support the employee.
Tourettes Action has a helpful factsheet to support people with Tourette’s and their employers.
Tourette Syndrome support & the Hidden Disabilities Sunflower
“I've found it so hard to find someone I can trust, who likes me for who I am, who loves me for who I am . . .sometimes I get very lonely” - John Davidson. To both help and surround himself with fellow people with TS, John set-up a TS support group. Today there are many groups up and down the country, as well as online support communities. To find a support group near you please visit: https://www.tourettes-action.org.uk/8-find-support.html
Many people with Tourette Syndrome also chose to wear the Hidden Disabilities Sunflower. This indicates to others around you that you have an invisible disability and may need some support, understanding or a little more time.
Tik Tok and Tourette Syndrome
Tik Tok provides a platform from which people with Tourette Syndrome can inform, educate, correct and raise awareness of Tourette Syndrome and the vocal, motor and mental tics that come with it. These, often young individuals, have accumulated audiences in the hundreds of thousands that follow these first-hand accounts of what it means to have Tourette Syndrome. An indication of a new generation of people wanting to learn, be better informed, inclusive and accepting. Providing hope that people will eventually be free to tic with no fear of being judged by others. And a glimpse of a world where people have replaced laughing at tics and Tourette Syndrome with understanding and compassion.
Sources / References / Further reading
* Wolicki SB, Danielson ML, Bitsko RH, et al. Children with Tourette syndrome in the United States: Parent-reported diagnosis, co-occurring disorders, severity, and influence of activities on tics. J Dev Behav Pediatr. 2019;40(6):407-414.