For young people

Tics are fast, repetitive muscle movements that can result in sudden and difficult-to-control body movements or sounds. For example, you, or someone you know who has tics, might keep blinking repeatedly. Lots of young people have tics, particularly children who are of primary school age. Some people may find their tics annoying, painful, or scary, and so speaking to a doctor and getting specialist assessments is important. However, often the tics don’t really bother young people, and in these cases, they might not need specialist assessment or support.

There are two types of tics in Tourette syndrome: motor and vocal tics. Motor tics are movements of the body (eye blinking, shoulder shrugging), whereas vocal tics are sounds that someone makes (sniffing, throat clearing, uncontrollable sounds made with your voice).

Tics can also be referred to as simple or complex. Simple tics (such as blinking or coughing) involve one set of muscles, whereas complex tics (such as jumping or saying words/phrases) involve several muscles working at once.

There is no specific test used to diagnose Tourette syndrome, however, there are certain things that doctors may look out for during the diagnostic process. Diagnosis is usually made through having a conversation with you and your family.

Some of the things we may ask/look out for can include whether:

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

Did you know that Tourette syndrome was named after a scientist? Well, in the 19th Century, a neurologist named George Gilles de la Tourette first described Tourette syndrome, and eventually the condition became named after him.

Some young people might compare their tics to other people with tics, however, it is important to remember that tics impact everyone differently. In the UK, we know that about 1% of the population has tics. This means it is likely that at least one other person at your school has tics too!

Tics tend to wax and wane. This means there may be times where you experience lots of tics, but other times where you experience very few tics. You may notice these changes in patterns can happen throughout the day, weekly, or even monthly.

For a lot of young people, although not everyone, tics might follow a similar pattern. For most young people, Tourette syndrome usually begins between the ages of 3 and 9 years, and often tics are at their strongest/most noticeable around the ages of 11 to 13 years. Some young people may notice that as they get older, their tics become less noticeable and occur less frequently. Several studies which follow up children to adulthood show that many of them have far fewer tics as they mature. It is important to remember everyone is different. Many young people may notice a reduction in their tics as they grow older, but others may not. Currently, there is no clear indication in the research about who will mature out of their tics with time.

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 anxiety disorders
• difficulties with managing anger
• finding learning difficult
• feeling low in mood

It is important that you and the team talk about how this affects your tics and what options are available to help both your tics and other difficulties you may be experiencing.

Visit the NHS website for more information about tics.

Sometimes, young people might find it difficult to explain about their tics to others. Some young people find it useful to keep a little explanation card with them that helps explain their tics to new people. For example, some young people find it helpful to keep a tic explanation card in their pencil case to share with a supply teacher at school who may not have heard of tics before.

Many young people find that their tics don’t bother them. If you feel as though your tics don’t interfere with your life, you probably don’t need support from a doctor but perhaps knowing about tics might be useful.

However, some young people find that their tics cause them pain 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 for helping manage tics.

Before considering treatment, it is important you receive a formal diagnosis. This will happen once you and your Parent/ Carers are seen by a specialist children’s doctor (Paediatrician) or by our multi-disciplinary team who are experienced in assessing tics. If a diagnosis is made, your doctor (or our team) will recommend which treatments may help to manage your tics and possibly other challenges you may have.

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

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.

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. These movements can occur in brief, 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 become noticeable 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.

During the COVID-19 pandemic, the Tics Service received a lot of referrals for young people with functional tics. You might remember the pandemic as being a very stressful period, where you may not have been able to see your friends or go to school. Because of this, lots of young people experienced high levels of anxiety, and in some this resulted in functional tic-like symptoms.

Often, we find that other things 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 the best option for you.

However, 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.

Learning more about what functional tics are and how to cope with them can be helpful for many young people. We offer a functional tics information group for young people who have had an assessment with us, so you can learn more about what functional tics are. It is important that the people around you understand your tics too, so we invite your Parent/ Carers to the group so they can learn how to support you and your tics. You are not alone in having tics, and the group is a chance to meet other young people who also have functional tics.

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.