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Supporting children and young people with Tourette syndrome

Information for parents and carers to support children and young people with Tourette syndrome.

What is Tourette Syndrome?

Tourette Syndrome is a neurological disorder beginning in childhood or adolescence which causes the individual to make involuntary movements and sounds known as tics. It is three times more common in males than in females. 

Though the cause of Tourette’s is unknown, it is understood to be linked to brain regions involved in movements, also there is emerging evidence that it is an inherited condition. It is believed to impact 1 to 10 in 1,000 children. It commonly occurs alongside Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive-Compulsive Disorder (OCD).  

Signs that child or young person may be affected by Tourette Syndrome 

Tourette Syndrome usually begins to present in young children aged between 3 and 9 years old.  There are two types of tics associated with the disorder; motor and vocal.  

Motor tics can range from involuntary movements which may range in severity from simple motor tics, such as increased eye-blinking, to more complex motor tics which can include repeated, frantic movements such as shoulder shrugging, arms jerking and head twists.  

Vocal tics can range in severity from simple vocal tics such as continued throat clearing or sniffing, humming or barking, to more complex vocal tics which may include repeated words or phrases and involuntary swearing.

People with Tourette Syndrome may experience both motor tics and the tics may be more pronounced at times of increased stress such as exams or large occasions.  Symptoms are believed to be most heightened during the teenage years.   

If you are concerned that your child may have Tourette’s Syndrome, it is important to talk to your GP as there is a high rate of co-occurrence with other conditions. For a diagnosis to be possible the individual must present symptoms for at least a year.

Common issues parents and carers may have to contend with 

Tics may vary depending on how the person is feeling. They can increase in intensity during times of excitement, stress, fatigue and anxiety. Therefore, it is important to keep a child or young person’s life organised with minimal disturbances which may cause heightened tic behaviours.  

Tics vary in severity and type. They can be harmful at times, through hitting things or themselves during their unintentional limb movements. This can be difficult to contend with as it may be viewed as violent, but it is important to bear in mind that it is completely accidental. Staying calm and patient is important during these times and any additional stress is likely to increase the tic behaviour. It is key to try to keep them safe during their tics, making sure there is limited harm as a result. Due to the uncontrollable movements using certain heavy or sharp tools can be very difficult and dangerous. Offering practical support and assistance allows them to stay safe. 

Tourette Syndrome is commonly associated with other conditions such as Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive-Compulsive Disorder (OCD). This is important to be aware of and understand for the individual as more behavioural problems may present themselves which cannot be explained from tics alone.  

The individual must present symptoms for a year for a diagnosis. This year is likely to be a difficult time without a full explanation or understanding of the syndrome. It is important to be supportive and open during this time to talk through the experiences and behaviour.  

There is no cure for Tourette’s, however, there are treatments available to help control the symptoms. There are behavioural therapies which aim to help improve awareness of tics and teach techniques to reduce the tics or replace the tic behaviour with a less detrimental one. Supporting individuals through these treatments enables them to feel more comfortable with their Tourette’s.

How to support a young person with Tourette syndrome

To help someone with Tourette Syndrome it is important to be patient, calm and attentive. 

It is important to encourage them in their activities. Sport and creative hobbies are a positive way for them to use their energy, improve their focus and develop skills.  They may also help reduce frequency and severity of any tics. 

Tics are uncontrollable and a child or young person can feel embarrassed, frustrated or exhausted by them, therefore ignoring unharmful tics is advisable. In public, people may stare, make comments or make the individual feel uncomfortable. Explaining Tourette’s to people enables them to be more understanding and respectful but, in situations where this is not possible, it is important to just ignore their behaviour and focus on supporting your child.  

Speaking to a trusted adult or professional may also provide a safe-space for young people to discuss how they are feeling, how they may feel impacted by their tics and provide opportunity to learn relaxation and breathing techniques which may help them manage their anxiety levels in stressful situations. 

What to say to schools and colleges

Schools and colleges must be aware so staff can accommodate and be flexible to their needs. You should ask staff to be patient and understanding of your child’s diagnosis and share with them any helpful strategies or classroom approaches recommended by a mental health professional.

You may also want to ask about the schools or colleges general bullying policy in and the measures they will take to support your child’s needs specifically, which may include age appropriate advice for other pupils and students.

During times of academic pressure (exams, applications) it may be necessary to provide special measures such as a separate room to take exams. This would allow the individual to have a calm environment and would not distract their peers if they did tic.  This does depend on the severity of the syndrome and educational assessments can occur providing information on the setting best suited. This would provide information on whether the individual needs smaller classes, individual tutoring or a more specialist school. 

What to say to siblings 

Due to the diagnosis taking at least a year it is difficult to know when to discuss the syndrome with siblings. As tics become repetitive, conversations about them would be appropriate. This would allow the sibling to be supportive of the individual, lessening concern or confusion over their sibling’s behaviour.  

As diagnosis occurs the siblings could be made aware privately or with the child it concerns. This depends on what the individual desires, however, it is vital the siblings are made aware to understand to condition.  

What to say to extended family 

The extended family may need to be aware of the condition especially if they are present with your child on a frequent basis. This makes the situation more comfortable for everyone so that your child is less embarrassed by the tics or trying to control them, and it is not a shock for the family. This conversation can be as simple or in-depth as desired, as long as they are aware that tics are uncontrollable behaviours.  

Additional support for parents and carers

  • Tourettes Action – runs events, support groups, gives information and provides current research articles.