"But Miss, I’ve got Tourette’s!”

"But Miss, I’ve got Tourette’s!”

Ruth Wadman and Georgina Jackson discuss the problems pupils with Tourette’s face in the classroom, and what schools can do to help

Tourette’s syndrome (TS) is an inherited neurological condition involving involuntary movements and vocalisations, “tics”, which persist for a year or more. As many as one school child in every hundred will have TS and boys are three to four times more likely to have TS than girls. Many will have only mild symptoms and may not have received a diagnosis. You may not think you have met a young person with TS, but you probably have.

The popular portrayal of adults with TS uttering obscene or socially inappropriate words and phrases (known as coprolalia) is unhelpful and misleading. Many children with TS find their tics lessen or disappear by the time they are 18 and only ten per cent of people with TS have coprolalia.   

Some individuals with TS do have symptoms that are disabling and that affect their education, social lives and economic prospects. However, milder symptoms often go unnoticed but still can have a detrimental impact on learning and relationships in school.

Our research, in partnership with the national charity Tourettes Action and funded by the Big Lottery Fund, has examined the personal, social and educational impact of TS. Students with TS, parents and school staff shared their experiences and insights by taking part in detailed interviews. We present some key findings from the research in this article. Crucially, our research has shown that TS is a complex condition that can be difficult to understand, and that schools can play a key role in helping students with this condition.

“A few of my teachers don’t really understand it. They don’t really know what tics I have, and some of them are like ‘stop it’ and I’m like ‘it’s a tic and I can’t help it’”. 11-year-old

Tics

Tics are sudden, rapid and uncontrollable sounds and movements. Tics can be simple, such as blinking, head jerking or coughing. Even simple tics are tiring and can cause damage to joints or self-injury. More complex tics, such as jumping and twirling, can seem purposeful but they are not. Complex vocal tics can involve uttering whole phrases that appear to be directed at others. These can be hugely embarrassing for the individual and it is important to remember that these utterances are not intentional.

“One of his tics was a racially offensive word. He didn’t even know he was saying it, and he certainly didn’t want to be saying it”. Mother

People with TS can feel an irresistible urge to tic, like the urge to scratch an itch.

“The feeling before the tic, it’s like a sneeze ‘cause you can’t really hold it back”. 16-year-old

However children, especially younger children, may not be aware of having these feelings. Some young people can hold back their tics for a period of time, but this is very effortful and feels uncomfortable.

Tics wax and wane; they can change in type, frequency and severity. They can get worse for a few weeks and then get better. Different tics can come and go for no reason.

“He tries to control his tics, but he can just get up one day and have a whole new different tic – so he has to start all over again”. Mother

Tics can be affected by periods of stress or stressful events. Many individuals report that their tics are different in different settings or at different times of day. Some students will have more tics at home than they have at school. Young people also report a reduction in tics when they take part in exercise or a pastime they enjoy such as playing music.

The changeable nature of tics can be confusing. It is important to understand exactly how TS affects the individual student.

Associated features

Most people with TS will have, or may develop, other conditions. Some students with TS will have one or two other diagnosed conditions, most commonly attention deficit hyperactivity disorder (ADHD) or obsessive compulsive disorder (OCD), but also autistic spectrum disorder (ASD). Other problems associated with TS include anxiety, self-injury, sleep disturbances and outbursts of anger. Therefore, a young person with TS may have a cocktail of symptoms.

“Teachers don’t understand the link between Tourette’s and all these other things – obsessive-compulsive stuff, attention issues and anger issues. They don’t grasp the connection and it’s a big connection”. 16-year-old

Tourette’s does not affect IQ and is not a learning disability.Tourette’s in school

TS does not affect IQ and is not a learning disability, but it can present barriers to learning. Tics tend to become most severe between the ages of ten and 12, so the transition into secondary education is a potentially difficult time. Our research focused on the experiences of students with TS in secondary school. The majority of young people we interviewed reported having difficulties concentrating in school.

“When the tics are really bad I can’t really concentrate on the work; I have to concentrate on keeping the tics in”.13-year-old.

Negative experiences with a small number of staff were, unfortunately, also a common experience. Students with forceful vocal tics can be seen as disruptive and may be told off or asked to stop tics. Young people do not find this helpful.

“He’s a clever boy and sometimes he is not able to produce very much at all but then other times he can do very well. Unfortunately we’ve had a few incidents with teachers telling him to stop ticcing or to ‘shut up’”.SENCO

TS can affect students in many different ways. Classwork, homework and examinations can all be adversely affected by tics. For example, hand or eye tics can interfere with writing, making it hard to complete work on time.

“She just couldn’t control the tics to do the homework… so we’d sit for three hours just to do a thirty minute piece of homework”. Mother

Some young people with TS will need support for learning. However, simply improving awareness and understanding of the condition in school can really help a student with TS to cope.     

Friends and peers

Most young people will have a good group of friends who understand TS and this group can help buffer against other social difficulties such as teasing. 

“He has some good friends, but when it comes to his peer group, they see him as a bit of a target because he stands out”. Father

Student with TS are vulnerable to ridicule, bullying and social exclusion but our research indicates that often this goes on unnoticed in schools.
Young people with TS also report having to deal with feelings of anxiety or feelings of anger in school, and these can also affect their relationships with others. Some students with TS may need social and/or emotional support in school.    

“He does get comments from other students and I know that they do mimic his noises, his tics – and that is something that we try to work with a lot now.”  Head of Year

Future prospects

Young people with TS worry about what will happen in the future, particularly about their employment prospects.

“I don’t want to be grown-up and still have Tourette’s ‘cause I’m scared that’ll stop me from getting a job or something”. 14-year-old

Positive work-related experiences in school can be very beneficial to young people with TS and their families.

“He had work experience and it went really, really well. I think that him and his parents were thinking is he ever going to be able to work, so work experience gave them a bit of hope”. SENCO   

How to help

TS is a complex condition and can affect young people in many different ways. Often, TS can affect students in ways that are not particularly noticeable in school.

“On the surface you wouldn’t think there was anything different about him; he’s good at hiding it. But I’ve learnt that it’s more than just tics and there is a lot of stuff going on in his head. So he may not always be fully engaged”. Teacher

Schools can find it difficult to understand which behaviours are involuntary tics and what may be more purposeful behaviours. 

“He sometimes makes animal sounds in lessons and then he gets in trouble. I need to explain that his noises are involuntary – he can’t help what he is doing”. Mother

Establishing good communication with the young person and the family can help schools to better support the student with TS:

• ask the student and the family about how TS affects him/her and how you can help
• find out what helped the student in his/her last school. Looking at how tics have been managed in the past can provide useful ideas about supporting the student
• it may be helpful to observe the student during the school day as tics can worsen in certain settings
• tics get worse when students are anxious, so good communication is crucial to explore concerns and create a sense of safety.

In the classroom:

• refrain from commenting on or responding visibly to tics whenever practical
• do not ask a student with TS not to tic
• consider appropriate behaviour management in light of the extent to which certain behaviours are not in the student’s control
• allow the student time out of lessons and a safe place to release tics, if needed
• be alert to potential mimicking, teasing and bullying
• be aware of any behavioural treatments or medication the student receives so that you can take account of any side effects and support the management strategies they have been taught.

Further information

Professor Georgina Jackson, lead investigator on the study discussed above, is Professor of Cognitive Neuropsychology, Division of Psychiatry and Applied Psychology, University of Nottingham. Dr Ruth Wadman, a Research Fellow in the department, carried out the research in schools and with families and young people:
www.nottingham.ac.uk

Advice and information on Tourette’s syndrome for teachers and parents is available from the charity Tourettes Action:
www.tourettes-action.org.uk

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Boy with Tourette’s syndrome seeks understanding, finds ‘haven’ at school

In many ways, 10-year-old Mason Burke is just a normal kid.

His favorite activity is playing with Legos. He likes to play video games, such as a game based on the TV show "Swamp People."

But there is one thing about Mason that makes him stand out, sometimes more than he would like. Mason has Tourette's syndrome, a neurological disorder characterized by involuntary movements and vocalizations, commonly called tics.

Mason has some subtle tics, such as tapping, but his vocal tic, which is a loud screech, often draws attention when he and his family are in public. And people aren't always polite or understanding.

Just yesterday, his mom, Jill Burke, was still fuming about an encounter at Hy-Vee earlier in the day. Mason had a tic and screeched in the check-out line, and a lady in the next line told him to stop. Burke explained to the woman that Mason had Tourette's and couldn't help it, but the woman said she didn't care, the sound hurt her ears.

"It was so bad and so rude, the lady behind her apologized for her behavior," Burke said.

Although some people are kind and understanding, such as the principal and staff at New Haven Elementary, Mason's school, encounters with rude strangers are not uncommon for the family. Burke, Mason and McKenzie Bailey, Mason's 15-year-old sister, can tell many stories about unpleasant encounters.

Mason said it hurts his feelings "a little bit" when such incidents happen, and he hates it when people stare. If he could tell people a message about Tourette's, it would be "don't stare" and "don't say, 'stop it.' " Burke has a message for people, too.

"Just for people to be more tolerant and not to yell out, especially when we say he has Tourette's," Burke said.

McKenzie's message took a similar tone. "Don't judge him. He's human, and just be respectful," she said.

The family agrees building awareness is essential to getting people to be more understanding toward people with Tourette's. It has worked wonders at New Haven, Burke said.

At the school, Principal Carole Garth has made it mandatory for staff to watch a 30-minute video about Tourette's. She also ordered several copies of the book "Tic Talk: Living with Tourette Syndrome," which explains Tourette's at an elementary level. At assemblies, Garth makes sure parents receive a flier explaining Tourette's and that they might hear Mason's vocal tic.

Burke said this has made a world of difference for Mason, who used to get in trouble at school before he was diagnosed.

"He went from being miserable to enjoying going to school. It's made a huge difference in his life," Burke said.

Garth agreed staff members have created "a nice little 'haven' " for Mason, but she wants to do better. She wants to make all of Columbia a safe haven for Mason. "It would be wonderful for the rest of town to be as compassionate as New Haven is," Burke said, although she isn't sure that is possible.

For now, the family is focused on smaller hurdles, such as summer school, when Mason will have to go to Shepard Boulevard Elementary. New Haven is not hosting summer school because of construction.

"I don't want the Shepard kids to go, 'You stop that,' '' Mason said.

Beyond that, there is middle school in a couple years. Burke said she will talk to all of his teachers and hopes the principal is as understanding and helpful as Garth. In addition to New Haven, Burke said family and friends have been a big support once they were made aware of Mason's condition.

McKenzie said she wants to hand out T-shirts and bracelets to increase awareness.

"There is a Tourette's foundation. I want to make it bigger so people understand better," she said.

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Raising awareness of Tourette Syndrome

Birmingham City Council health bosses have added their support to calls for greater understanding of Tourette Syndrome.

Cabinet member for Health and Wellbeing, Cllr Steve Bedser, Director of Public Health, Dr Adrian Phillips and Chief Executive, Stephen Hughes met four mothers touring the UK to raise awareness of the neurological condition, which sees sufferers often develop involuntary ticks and movements.

Jacqueline Campbell, Eileen Darling, Liz Mielnik and Donna Emmerson, who between them have six children and grandchildren who are diagnosed with Tourette's, have undertaken a 2,200-mile road trip, aiming to visit 52 cities in 10 days, to hand over information packs, as well as supporting children and adults with the illness.

The quartet are meeting politicians and officials to dispel misconceptions surrounding the condition. For example, 90 per cent of Tourette's sufferers do not swear involuntarily, as they are often depicting doing in the media.

And they were joined by Birmingham campaigners Catherine Mosey and Hannah Prentice as they made a flying visit to the Council House.

Cllr Bedser said: "Tourette's is an often misunderstood condition and I applaud the four ladies for undertaking this journey to increase awareness.

"I know in Birmingham we have passionate campaigners like Catherine, who works tirelessly to change people's perceptions of Tourette's, and Hannah who is a Young Disabled Champion."

Donna Emmerson, whose eight-year old son, Kristian, suffers from Tourette's, said: "Raising money by doing this isn't the main thing for us. There have been a few TV programmes about Tourette's, but we don't feel they portrayed certain aspects of the condition fairly, so we are trying to change people's perceptions."

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