Tics and Tourette syndrome - Information for young people

Tics are sudden movements or sounds that are difficult to control and happen repetitively. For example, you, or someone you know who has tics, might keep blinking repeatedly.

Some people may find their tics annoying, painful, or scary, and so speaking to a doctor and getting a specialist assessment can help. However, some people aren’t bothered by their tics, and in these cases, they might not need to meet with a health professional at all.

Lots of young people have tics, particularly children who are of primary school age.

In the UK, we know that about 1% of the population has Tourette syndrome. This means it is likely that at least one other person at your school has tics too! 

Some young people might compare their tics to other people, however, it’s important to remember that tics impact everyone differently.

There are two types of tics: motor and vocal tics. 

• Motor tics are movements of the body, like eye blinking and shoulder shrugging.
• Vocal tics are sounds that you make with your voice, or things like sniffing or throat clearing.

Tics can be referred to as simple or complex, depending on the muscles they involve.

Simple tics are those that involve one set of muscles– such as blinking or coughing.

Complex tics are those that involve several muscles working at once – such as jumping or saying words and phrases.

At least 5% of young people will have a tic at some point, but not everyone with tics has Tourette syndrome. Tourette syndrome is a type of tic condition in which a person has at least one vocal and a few motor tics that last for longer than a year.

In the 19th Century, a neurologist named George Gilles de la Tourette first described Tourette syndrome, and eventually the condition became named after him.

There is no specific test used to diagnose Tourette syndrome. Usually, a diagnosis is made through having a conversation between a doctor, you and your family about the tics your experience.

There are certain things that the doctor may look out for or ask about, to make a diagnosis. These include if:

• You have motor or vocal tics that are regular or happen at the same time.
• Your tics have been happening for more than one year.
• Your tics disturb your home, social or school life.
• You have any other conditions that may be contributing to your tics.

Many young people experience other difficulties alongside their tics, such as:

• Attention deficit hyperactivity disorder (ADHD): This means you may have difficulties concentrating, organising yourself, or controlling your impulses.
• Autism spectrum disorder (ASD): This means that you may find it difficult to recognise and understand your own and other people’s emotions or may find unexpected changes to routines challenging.
• Obsessive compulsive disorder (OCD): This means you may experience repeating unwanted thoughts that you find distressing and feel like you must do certain behaviours to make the thoughts go away or to stop something bad from happening.
• Other big worries which may impact your life.
• Difficulties with managing anger.
• Finding learning difficult.
• Feeling low in mood.

It is important that you talk with your team about what you struggle with so that they can help you. This may be more than just tics. 

Tics tend to go up and down over time.

For a lot of young people, although not everyone, tics might follow a similar pattern. For most young people, Tourette syndrome usually begins between 3 – 9 years old. Often, tics are at their strongest and most noticeable around 11 – 13 years old. Many young people may notice that as they get older towards young adulthood, their tics become less noticeable and occur less frequently.

It is important to remember everyone is different.

Young people might find it difficult to explain about their tics to others. 

You might find it useful to keep a little explanation card with you, that helps explain your tics to new people. For example, you could keep this in your bag or pencil case to share with a new person or teacher who may not have heard of tics before.

Information on explaining tourette syndrome to others.

Some young people find that their tics are painful and make it hard to concentrate at school or do things they enjoy. If you can relate to this, then you might benefit from some of the treatments that are available to help manage tics.

Before having treatment, it is important that you meet with a health professional to understand more about tics and possibly other challenges that you might have. If a diagnosis is made, your doctor (or our team) will recommend which treatments may help.

Learning more about what Tourette syndrome is and exploring strategies that can make your tics easier to cope with can be helpful. 

Tourette syndrome information group:

We have a tics and Tourette syndrome information group for young people who have had an assessment with us, so you can learn more about what Tourette syndrome is. It is important that the people around you understand your tics too, so we invite your parent/ carers to the group so they can support you. You’re not alone in having tics, and the group is a chance to meet other young people who also have Tourette syndrome.

Therapy

Some young people find therapy useful as it can help them develop strategies to identify and manage their tics, or other difficult emotions such as anxiety or anger.

Medication

Sometimes, medication can also be helpful. For example, medicine can help with reducing the severity of the tics themselves, ADHD, OCD, and sometimes depression. However, it is important to remember that medicine may not always be helpful for everyone, as each person is different.

Functional tics are tic-like movements that may look like Tourette syndrome but are thought to be triggered by stress or anxiety. This results in the person’s brain responding in an unpredictable way. The movements or sounds can occur in explosive bursts and can last for minutes to hours.

Like an assessment for any other tic disorder, you and your parent or carer will be invited to a comprehensive assessment. During this assessment, members of our team will ask you lots of detailed questions. For example, when assessing for functional tics, your doctor may specifically look out for:

• When you started experiencing these symptoms, as functional tics are more likely to start during your teenage years.
• Things in your life that you might have found/be finding difficult.
• How often your tics interfere with your daily actions.
• Whether you experience any other difficulties in your life aside from the tics.

It is likely that what causes and keeps functional tics around is a result of a range of factors, such as life stresses, genetic vulnerability, and anxiety.

Often, we find that other challenges go alongside functional tics. For example, some of the young people we see also have ADHD and ASD, which can increase anxiety if they are not diagnosed and properly understood. This is because undiagnosed symptoms are usually unsupported, which can increase the stress a young person experiences.

Some young people who experience functional tics also have Tourette syndrome, but not everyone does. It is important you receive the correct diagnosis, so you can get the best support.

Like Tourette syndrome, not everyone who experiences functional tics is bothered by them. If this is the case, then seeking specialist assessment from a doctor may not be needed.

For some people, functional tics can cause huge disruption to their daily lives. If this is the case for you, it may be helpful to think about treatment options with your doctor and family.

Some young people find it helpful to explore the things that are difficult in their life, to help them identify the areas that could make them feel anxious or stressed. Talking and behavioural therapies can help you develop strategies to manage difficult emotions such as strong anxiety. We know this plays a big role in functional tics, so learning how to cope with the anxiety that can trigger them can help you manage your tics.

• Find out more information about functional tics.
• Visit the NHS website for more information about tics.