Tics in the Outback

Posted Mon 18th Jul 2016 at 11:10
by Estelle

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A young high school student from Australia got in touch with Tourettes Action recently to help answer some questions about Tourette Syndrome for her high school project. Tourettes Action research manager Seonaid Anderson discussed these questions and we thought this would also make an interesting blog to read.

My name is Estelle and I live in a small rural town in Australia. I began to tic at the age of five, however it took eleven years for me to be formally diagnosed with Tourette Syndrome. Being diagnosed at the age of sixteen made me aware of the misconceptions many people within society have about TS and the stigma that surrounds the disorder.

For my final year of high school I am required to do a major research project, so I decided to use my personal experiences to focus on societal perceptions and the stigma of Tourette Syndrome. Undertaking this project has been immensely rewarding for me as I have been able to connect with people in similar situations to mine all across the world and educate people about Tourette Syndrome along the way.

Part of my research included conducting surveys of the general public. The majority of the one hundred and sixty people I have surveyed so far said that they had first learnt about Tourette Syndrome from films and television, however many of these films and programmes had given an incorrect or dramatised portrayal of life with TS. Most people also did not know that Tourette's often comes with a variety of co-morbid conditions and that not all people who live with Tourette Syndrome have coprolalia.

I have interviewed a number of people connected to various organisations dedicated to researching and stopping the stigma of Tourette Syndrome, including Tourette's Action research manager Seonaid Anderson. I hope you enjoy the interview and find it as educating and informative as I did. 

Estelle: What do you think are the most common misconceptions about TS?
I think the first misconception is about the swearing! We are always hearing that people think of swearing when they hear Tourette Syndrome. There are lots of other tics which are far more common and in fact only 10% of people with TS have the swearing tic (coprolalia). There are many people with TS who have much milder vocal and movement tics but the most common representation in the media is of the most extreme tics.
The other misconception is that TS is a rare phenomenon, but in fact there are 300,000 people in the UK with TS, that’s 1 in a 100 schoolchildren with TS. A common misconception about TS is that sometimes children’s tics have been interpreted as a sign of naughtiness and assumed they were under their control

Estelle: Do you think there is a stigma surrounding TS? If so, what is this stigma and how has it come to be?
Yes there is a lot of stigma about this condition. People seem to think that it’s OK to make jokes about it and see the funny side of it. We wouldn’t do that for a condition such as Parkinson’s or epilepsy.
Now there are of course sometimes funny tics and if the person with TS laughs too and is comfortable about dealing with their tics in this way then that’s OK. Another stigma is that people with TS are crazy, or that they have mental health problems. But TS is a neurological condition and is caused by differences in brain structure and function.

Estelle: Do people with TS face discrimination because of their disorder? If so, what impact does this have on them?
I would say that we do hear from a lot of people with TS who feel they have experienced this and a lot of this may be due to misunderstanding by people.

We do hear good stories of young people who have found supportive peers, and one recent study the researchers looked at indicated that levels of bullying were lower than in earlier research, suggesting the social stigma of the condition may be in decline. As Tourettes Action and the work of others to inform and educate people about TS we hear more stories of young people with TS being hopeful about the future, believing that their tics were likely to reduce as they got older. Even if tics don’t reduce with age then there are still examples of people who don’t let their tics hold them back (for example employment, relationships, starting a family). I think there are many people in the UK who are able to live their lives to their fullest potential, some would argue despite their TS others might say because of their TS. Reference:

Tim Howard goal keeping skills - Tourette's Syndrome associated with superior timing control

Children with Tourette's show superior grammatical ability

Patients with Tourette's have more self-control, not less.

I also love the video we have on the TA website about a barber in NY – very inspiring stories!

Estelle: Do many people with TS worry about how others see them? If so, why? Impact on confidence?
I think one of the main roles of Tourettes Action is to show to those young people who are newly diagnosed that they can do well in life as well as having Tourettes Syndrome. There may be extra challenges because of TS but they also have a chance to inform and educate others about the condition too. Some people are fantastic about explaining to people what the condition is like, others like using information from Tourettes Action such as the TA ID card which people can show in situations where they may want to explain to others about their tics. People have reported that this is helpful on buses, if in contacts with police or hospital staff, in schools or in employment situations and many other varied settings. The card itself as well as the tear off information cards have been extremely useful for some people with TS.

Estelle: Do you think TS has been incorrectly portrayed in film and television? If so, what impact do these portrayals have on people who live with the disorder?
I always feel slight concern when someone from a media company contacts us here at Tourettes Action. There has been more and more coverage about people with Tourettes Syndrome here in the UK. I think the surge in reality TV programmes involving people with TS such as ‘Big Brother’ and ‘The Undateables’ has meant people have more exposure to the idea that Tourette Syndrome is all about swearing. The most interesting thing for media companies is that they want to find people with the most extreme forms of TS as it makes a more interesting story for TV or film. I think sometimes that people with milder TS may get a little frustrated that this receives such focus. Our message from Tourettes Action is: "People with TS can live a perfectly happy and normal life and children do cope with the issues."

Estelle: Do you think content on the Internet and social media that mock TS, such as YouTube videos and memes, have helped to perpetuate the stigma surrounding TS? What impact does this content have for those who live with the disorder?
Yes I think anything which makes fun of people with a certain condition does nothing to help peoples understanding or empathy with those suffering or in distress.
It is a very misunderstood condition. Regularly the tics that are part of TS are not the major problem but are most obvious. Often the many co-morbidities such as OCD and ADHD can be very difficult for daily functioning.

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