FAQ & Links

You are a leader in a youth movement and one of your children has Tourette syndrome. Or maybe one of your co-leaders has this syndrome?

‘How do you deal with that?’, you may be wondering. Here are some concrete tips:              

A child with Tourette in your group

Open communication with your group and member: First of all, ask your member what they prefer: will the group be told about the tics or not? If so, in what way?

It can be nice to let your group know that everyone is different and some children's brains work a little differently, making sounds and movements they can't help.

Check regularly if other children understand and how the child with Tourette's feels in the youth movement.

Ask how the child prefers you to respond to their tics: most people find it best if you just ignore the tics and pretend the tics are not there. Then you just see the child. Some prefer you to be light-hearted and joke about it together from time to time. However, this is only possible in a safe atmosphere and if the person with Tourette's is really okay with it.

Inclusive activities: think about how to make your games inclusive for everyone. You are surely creative enough for that! A classic 1-2-3 piano might not be ideal for a child with tics, but maybe your version requires them to move as much as possible? Also think about how you will handle practical matters, such as sleeping at camp with a child who has loud noise tics. Be sure to discuss with the child and parents/carers what works at home. Perhaps the child has something to bite on that makes the tics less, for example.

More than just tics: Tourette's is often more than just tics. It can also be hyperactive, compulsive, anxious behaviour or sleep problems, for example. Don't punish a child for things they have no control over and ask parents/carers what the exact needs of this child are. Many children with Tourette syndrome, for example, benefit from predictability, a place to unwind or 'tic out', etc.

A co-leader with Tourette syndrome

Show that you are open to everyone by actively learning about Tourette's (you are reading this, so good job!) and working together to find what works best.

Dealing with tics: the same things as with children apply, mainly ask the person themselves how they prefer you to respond to them. Always ignore the tics, with an occasional dash of humour, etc. Also know that seeing and hearing tics can be weird at first, but in a lot of people it gets used very quickly.

Suggest helping to frame it to the group: it is often nice for the person with Tourette's if the whole group knows it from the first time and they don't have to explain the same thing a hundred times. You can offer to tell it together to make it less exciting. It may also be that they rather not tell your group members , that's fine too, everyone can make their own choices.

And above all: someone with Tourette syndrome is just another person you can have lots of fun with in the youth movement!

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^{Image: Kevin Erdvig}

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Exams at school or university can be a very stressful time. So here are some tips to help you stay calm and in control. Here are some tips to help you deal with stress and anxiety when they arise:

• Write down your worries, then throw the paper away or give it to someone you trust.
• Take a walk or do some exercise.
• Listen to music that calms you down.
• Play a game to forget your worries and stress.
• Remember that everyone is different and don't compare yourself to your friends. TS can make exam time extra difficult at school or university. We're talking about school here, but it can be applied at any level.

There are things your school can do to help you during exam periods when you're feeling stressed and your tics are getting out of hand.

Discuss this with your parents and contact the school (as early as possible) so that together you can look for small adjustments that can make it easier for you and the others. Perhaps some of the suggestions listed here do not work for you and you have your own tips. Pass them on to us, so we can expand our list and you can help other people with TS. Some of our suggestions:

• Make sure the school has all the information about you, e.g. that you have TS, what is difficult for you and what helps and how they respond best. This is very important if you have to do exams in a larger room with a supervisor who does not know you. Ask them to inform this person.
• Tell them what tics you have and how they respond best (e.g. ignore them).
• Ask if it is possible to do your exam in a separate room and ask for extra time if necessary.
• When you know where the exam will take place, ask if you can sit on the side. Many people with TS get more tics when they sit at the front or in the middle of a room. This is often because they think that their tics will be noticed more and thus disturb others.
• If you have tics that are less socially acceptable (e.g. spitting), it may be necessary to brainstorm about possible solutions. For example, a solution for a spitting tic could be a handkerchief that you can spit into.
• Ask if you can use something to fidget with or play with that will reduce your stress. There are many toys on the market that can be used for this. Always ask if you can bring such a toy into the exam room.
• Tics can get worse when you are tired. If possible, take regular breaks, stand up, walk around. This improves your blood circulation and therefore also the blood flow to your brain!
• Talk to your parents and teachers often and let them know how you feel and if there are things that make your tics worse or tell them about any new tics.
• Together with the school, appoint a person you can talk to when you are experiencing stress or anxiety.
• If you would benefit from really taking a break, ask if you can do that somewhere in an environment that feels safe to you.
• Make sure you eat well. During the exam period, your body needs fuel and it will burn more calories when stress increases. That is why healthy eating is so important during this period. Eat lots of vegetables and fruit, proteins and especially drink enough water.
• Sleep, another important part during the exams. Make sure you get enough sleep and that you are well rested. Take a break from social media and avoid screen time (phone, TV, laptop, tablet and game consoles) as much as possible in the evening and at night when your body needs rest.
• Exercise (take the dog for a walk), fresh air, all things that reduce stress. Go for it!
• Do you feel the stress when you enter the exam room and also during the exam itself? Then take a moment to focus on your breathing. Try to slow down your breathing and tell yourself: “relax, concentrate, you will succeed”. It really helps! And remember, exams are important, but certainly not the only way to a successful future. Many people do very well in life and were not the best students at school.
• Give yourself a break, there is a limit to the capacity of your brain to store information. If you continue for too long, it all becomes confusing. You will remember much more if you take a break regularly, even if it is just to have a drink.
• Plan fun things to look out to after the exams. Remember your stress level won’t always be this high.  
• Take enough time to relax before you go to bed so that, once in bed, you fall asleep quickly and you do not lie there thinking about all the things you still have to do. Keep busy during the day and when you’re not studying, do something you find nice.

You have your high school diploma, but you are not yet ready to start working. Then studying further at university or college might be something for you. Are you in doubt? Not everyone has to go for an academic education. You can also find very unconventional and practical courses, from making jewelry to social work, everything is possible. Below you will find some information and tips about studying with TS.

Should I say that I have TS?

You have undoubtedly asked yourself that before. Maybe you used to do it, but now you see university or college as a new start and you think differently about it. It might be an opportunity to show who you really are and probably no one knows you there. So it is entirely up to you whether you tell or not.

It is also much less structured than at school and you are much freer in your actions. The other students are also new and come from all over the country. You are more of an individual and that is also appreciated more there. So it may also be that people are more open to people with TS. There are also different groups that can inform you.

You can tell professors and supervisors that you have TS. They can make sure that you get the right support.

Then you have your roommates. It might also be a good idea to inform them. You share things with these people, such as the kitchen and the bathroom. So it can be useful to be open about your TS: this way you prevent annoyances when a vocal tic keeps someone awake, for example, and maybe you can see the humour in it together!

When you live with several people under the same roof and share rooms, it comes down to making compromises and when you are open about your TS, it can help to create a more relaxed atmosphere in your room and that is really worth a lot. In some cases, you can already find out who your roommates will be. Then you can perhaps inform them by email, which might be easier. If you decide not to inform them, that is of course your decision and completely okay.

Then there are your fellow students and friends. Again, you are not required to say it, but it can help you when you have a vocal tic during class. Then they know it is not on purpose. Compare it to someone who coughs or sneezes a lot. These are sounds that you cannot prevent, so it is a bit the same with TS. Most people are only temporarily distracted by sounds. If you are not ready to say it in the first class, do it a few classes later. You will also be able to concentrate better if you are not trying to suppress that tic all the time.

Do you need special accommodation?

It is possible that your form of TS means that you need special accommodation, for whatever reason. Perhaps environmental noises aggravate your tics, so a room further away from the hustle and bustle would help. Contact the student organisations, they can do a lot for you.

What if I cause damage with my TS?

Rooms on campus: the regulations will say that you are responsible for any damage you cause to the accommodation. If you are concerned that your tics could cause damage, be sure to discuss this with your university. They will be more understanding if you are open about your TS and report any damage immediately so that there is no dispute later. Be sure to include this in your contract.

Landlords. When it comes to landlords, it is not always that simple. You sign a tenancy agreement and it usually states that all damage, except from daily use and wear and tear, is the responsibility of the tenant. Before you sign the contract, it is therefore advisable to inform your landlord of your TS, otherwise you may lose your deposit. Depending on the landlord, you can suggest including a clause stating that you cannot be held liable for damage resulting from your TS. There is a good chance that you can get legal advice from your university or college before you sign a tenancy agreement. By the way, you cannot be refused as a tenant on the basis of your TS, that is discrimination.

What if my tics disturb my neighbours? You may think that your tics will bother your neighbors. That is very considerate of you, but you should not worry too much about it. Most students are exposed to sounds or noise from their housemates, so most of them are even aware of this and are used to it. You will probably encounter many louder people. If you still feel uncomfortable, ask for advice on campus, they may be able to help you by providing better insulated accommodation.

What if I tic during class?

Tic during class can be annoying for you and your fellow students. For you, it may be difficult to take notes while ticking or to stay focused while suppressing your tics. Here are a few tips: you can talk to your lecturer and they can give you a written version or you can borrow the notes from a fellow student friend. You can always bring your laptop if you type better than you write. You can also record the class so that you can listen to it again later and write out the notes. Also let your lecturer know that you will be making noises during class. This is polite on your part and it lets the lecturer know that you are not disrupting the class and he or she will not get annoyed. If you still feel uncomfortable, talk to the study coach about it and remember that you have just as much right to be there as your fellow students.

What if I have difficulty with assignments and exams?

Perhaps you have had difficulties with exams in the past. The university or college should give you the opportunity to take the exams in a separate room and/or give you extra time. To be sure of that extra time, make sure that your supervisor is informed of your difficulties well in advance. Well in advance means months, not weeks or days! As for tasks, it is best to inform your supervisor from the beginning and ask for help. It can be useful to sit together every few weeks or when deadlines are approaching. That way you are sure that you can keep up with the work. You can also ask for help from friends or volunteer study supervisors. If you have already fallen behind, ask for help. It is often possible to make up for it and then there is always the second sitting, but don't count on it too much, see it only as a last resort. It is better to ask for help in advance to stay on schedule.

What if I need a doctor in my student room?

If you are staying in my student room for a long time, find a local GP. Your GMD (Global Medical File) can be consulted by that doctor. In some universities there are also student doctors that can help you. If you have to take medication, also report this to your supervisor or the study guidance so that everyone is informed in case something happens.

For a young person with special needs, any change can be a challenge, but the transition from primary to secondary school can be one of the biggest challenges of their entire school career.

Here, we look at the typical difficulties that children with TS experience and how we can help them make the transition as smooth as possible.

Tourette’s does not affect IQ. It is not a learning disability, although it can cause significant learning difficulties. A major problem for people with TS is that they can have such a wide variety of tics. Tics come and go and vary in intensity and form.

Coughing and blinking are often the first tics to appear. Tics can cause fatigue, pain and injuries which makes it difficult to follow lessons well, to concentrate and to perform tasks such as writing exercises.

Socially, it can lead to bullying and exclusion, especially during puberty and adolescence when the tics are at their most severe.

A misconception is that it is only the tics that cause the most difficulties. Unfortunately, TS usually occurs together with other conditions, the so-called comorbidities. Young people indicate that these often cause more difficulties than the tics themselves. The conditions that most often occur together with TS are OCD (obsessive compulsive disorder), ADHD and sometimes ASD.

It is therefore important that the treatment of TS must be tailored to each child individually and always in consultation with a specialist. This also applies to the school career of someone with TS. Their difficulties but also their strengths are very different and unique for each student and therefore the education and approach must in fact be tailor-made. What works for one, sometimes does not work at all for another.

PLANNING

Consultation between teachers from primary school, secondary school and parents can be a way to draw up an individual transition plan. Such consultation moments are ideal for transferring the acquired expertise, such as which tics often occur and whether there are comorbidities. Tips on recognizing certain behavior and the best approach to this can be passed on. In this way, the future teacher knows what is involuntary behavior and what is not and can tackle it in the right way. Some vocal tics can be loud and disruptive, but asking the student to stop is not helpful. It just makes things worse. There are many other activities that are affected by TS such as communication, planning, time management, organization, and completing assignments. Tics can also negatively impact classwork, homework, and exams. Hand and eye tics can affect handwriting, making it difficult to complete assignments on time and making them look messy.

SUPPORT

Increasing knowledge and awareness of this condition and what support these students need can be of great help to students with TS. There are few resources specifically on dealing with students with TS. Some instructions for students with ASD include helpful tips on planning and organization, anxiety, or challenging behavior.

The tools that teachers and students often find helpful are the use of an emotional barometer and a self-curated toolkit for dealing with students with challenging behavior and tantrums. For those who have difficulty with planning and organization, a personalized schedule can be created that can help organize and do homework and makes it clear what needs to be done first and also teaches the student what priorities he or she needs to set.

In consultation with the parents and student, cards can be used. The student can then hold them up or put them on the corner of the desk when they are having a hard time or feel a tic attack coming on. The student can then leave the classroom or the activity for a while to tic out. That is being able to let go of the tics for a while      

Iktic-Jetique can always come give a presentation in schools or teach the teachers and pupils how to act towards a pupil with Tourette’s and to educate them.

For people with Tourette Syndrome (TS), engaging with the media can be a powerful way to raise awareness, break stigmas, and even raise funds. However, it’s important to approach such opportunities thoughtfully. Here are some key considerations and tips for navigating media appearances to ensure a positive and respectful experience.

1. Preparing for a Media Appearance

Before committing to a media project, it’s crucial to understand the nature of the program. Whether it’s a news piece, documentary, or entertainment show, research the production company and their previous work. Make sure they are reputable and have knowledge of TS. Ask plenty of questions—why they approached you, what their goals are, and how they plan to portray TS. Be cautious of any programme aiming for sensationalism or an “inspirational” narrative that might not align with how you wish to be represented.

2. Key Tips for Media Engagement

• Journalists & Filmmakers: Media representatives may contact you through social media or email. Ensure that their goals align with your values, and don’t hesitate to say no if it doesn’t feel right. You can also explore creating your own content to share your story on your terms. Don’t let anyone pressure you into actions or statements that don’t feel authentic to you. Know that you owe the production team nothing and it is not your responsibility to educate the population.  
• During Filming or Interviews: Request a clear plan of what will happen before, during, and after filming to minimise stress. Ask if the crew has experience working with neurodivergent individuals and share any specific needs you may have, such as breaks or considerations for fatigue.
• Your Requirements: Media projects often demand long hours and patience. Make sure the team knows your boundaries and preferences before filming starts, and feel free to request these be included in a formal agreement. Ask for support during the process.
• Editorial Control: Request to review the content before it’s published or aired. Knowing the program’s title and intended tone can help ensure that the final product reflects your story accurately and respectfully. Also, keep in mind that once your story is published, it can stay online indefinitely.

3. Support network

Before agreeing to a media project, think about how it may affect your family and friends. Some programs may want to film you in your everyday life, so it’s important to ensure that everyone involved is comfortable with the process and potential public exposure. Negative feedback, especially online, can be harsh. Make sure you have a strong support network to help you through any challenges that arise.

4. Public Reaction and Aftercare

While media exposure can lead to increased understanding and support, it can also attract negative attention. Be prepared for a variety of reactions and ask the production team if they offer aftercare support in case the aftermath becomes overwhelming. Managing expectations is key—your life won’t dramatically change after a brief media appearance, so stay grounded and don’t feel pressured to represent the entire TS community.

Final Thoughts

Working with the media can be an empowering and positive experience, but it’s essential to prioritise your well-being and comfort. By asking the right questions, setting clear boundaries, and ensuring that the portrayal of TS is respectful, you can help educate the public while also protecting your personal and emotional health. If you’re not entirely comfortable, it’s okay to say no and wait for a better opportunity in the future.

Do you see someone making obscene gestures on the street?

Does someone seem to be shouting something without context?

Is someone exhibiting peculiar facial movements?

These could all potentially be signs of Tourette syndrome. As a police officer, it is important to recognise and understand this neurological disorder so that you can respond appropriately. Tourette is a condition characterised by motor and vocal tics. These tics are sudden, repetitive, non-rhythmic movements or sounds. They range from eye blinking, head jerking, shoulder shrugging, and making sounds like sniffing, throat clearing, coughing, to, in rarer cases, the utterance of inappropriate words or phrases (coprolalia) or gestures (copropraxia).

These behaviours can often elicit misunderstanding and even aggressive reactions from bystanders who are unaware of the condition. Tics do not reflect a person's actual thoughts, but often the last thing that person would want to do or say in a given situation. Insults, tics related to drugs or weapons, and obscene gestures can therefore be triggered precisely by the presence of police. As a police officer, you may encounter situations where you encounter someone with Tourette.

It is essential to know that these tics are involuntary and not intended to cause offence or provoke.

Here are some guidelines on how to best handle them:

1. Stay calm and patient: People with Tourette cannot simply suppress their tics, and stress or pressure can exacerbate them. Remaining calm helps de-escalate the situation.
2. Show understanding and empathy: Demonstrate that you understand that the person has a medical condition. This can help reassure the person and bystanders.
3. Inform your colleagues and the public: If the situation allows, briefly explain that the person has Tourette. This can prevent misunderstandings and reduce tension in the situation.
4. Ask if the person needs help: Sometimes people with Tourette can use assistance, for example, if they are experiencing severe tics or a tic attack. Ask calmly if there is anything you can do to help. Often, this involves informing bystanders, removing fragile items from the vicinity, and so on.
5. . Avoid punishment or sanctions for tics: Do not punish someone for behaviour resulting from tics. This can lead to further stress and therefore more tics.

By being aware of Tourette and how to respond to it, you can contribute to a safer and more understanding environment for everyone as a police officer. Your attitude and approach can make a big difference in how these people experience their daily lives.