Tics and Tourette Syndrome in Children with Intellectual Disability

Intellectual disability is a lifelong neurodevelopmental condition. It is characterised by significant difficulties with learning, understanding, and everyday functioning.

Children with intellectual disability may experience challenges with:

• Learning new information and skills.
• Communication and expressing themselves.
• Problem-solving and understanding abstract concepts, such as time, emotions, or change.
• Everyday tasks such as self-care and independence.

These difficulties are usually present from early childhood and are often identified during primary school.

There is a wide range of intellectual disability, from mild to severe. Some children may attend mainstream school with additional support, while others may need to attend a specialist school.

People with intellectual disability continue to learn and develop skills throughout life, although typically at a slower pace than their peers. They may also find it harder to transfer skills to different environments – for example, applying a skill learned at home in a school setting.

In the UK, the terms are often used interchangeably. In this information sheet, we use the term intellectual disability because this is the internationally recognised clinical and diagnostic term used within research, healthcare, and diagnostic manuals.

Tics are sudden, repetitive movements or sounds that happen involuntarily. This means your child is not choosing to make them, even if it may sometimes appear that way.

Examples of tics include:

• Motor tics - blinking, facial grimacing, shoulder movements
• Vocal tics - throat clearing, sniffing, sounds or words

Find out more information about tics.

Tourette syndrome is diagnosed when:

• Both motor and vocal tics are present
• Tics have been present for more than one year

Find out more information about tourette syndrome

Tics often vary in frequency and intensity over time.

Some children experience a sensation before a tic occurs, known as a premonitory urge or “tic signal”. However, children with intellectual disability may not be able to recognise or describe this feeling. Some children may also notice the sensation but not have the language or ability to describe it.

Tics are relatively common in childhood. However, they are more frequently experienced in children with intellectual disability.

Research suggests that:

• Around 20 to 45% of children with special educational needs also have tics.
• Tics are also more commonly seen in individuals with other neurodevelopmental conditions, such as autism, where rates may be as high as 22 to 34%.

In children with more significant intellectual disability, tics may be under-recognised, particularly if the child has limited verbal communication or is unable to describe their internal experiences.

Tics may present differently depending on a child’s level of understanding and communication.

For children with more significant intellectual disability:

• Tics may appear more abrupt or less predictable.
• Tics may occur alongside other repetitive behaviours, such as stereotypies, making them harder to identify.
• Changes in tics may reflect environmental factors, such as stress, fatigue, or sensory overload

Increases in tic frequency can sometimes signal that a child is feeling overwhelmed or dysregulated.

Talking to your child about tics is important, and you should tailor this to their level of understanding.

Helpful approaches include:

• Using simple, clear language
• Supporting explanations with visuals and demonstrations
• Repeating information over time

There is currently no cure for tics, but there are effective ways to help children manage their tics and to reduce their impact.

For children with intellectual disability, support often focuses on:

• Reducing distress
• Supporting regulation
• Improving participation in everyday life

A helpful starting point is to understand your child’s tics in context:

• Define the specific tic or tics clearly
• Notice when it happens most often
• Identify what happens just before the tic
• Observe what happens afterwards
• Consider which factors can be changed or supported

Professionals such as psychologists, occupational therapists, and specialist nurses can support families with this process.

How adults respond to tics can make a significant difference.

Try to:

• Remain calm and neutral
• Avoid drawing attention to the tic
• Don’t repeatedly ask your child to stop the behaviour
• Respond positively to other behaviours (for example communication, engagement)

Directly focusing on tics can sometimes increase anxiety and make them more frequent.

Many children with intellectual disability have sensory sensitivities that can interact with their tics.

Tics may increase:

• During transitions
• When a child is overwhelmed
• When environments are noisy or unpredictable
• When a child is tired or unwell

To help, try to:

• Create a calm, low-stimulation space
• Use sensory tools such as fidget toys and weighted supports if your child finds them helpful
• Maintain predictable routines
• Use visual schedules and countdowns for transitions

Getting to know your child’s patterns is key to reducing triggers and supporting regulation.

It is important that your child’s school understands their tics and how best to support them.

We recommend:

• Including tics within your child’s Individual Education Plan (IEP) or Education Health and Care Plan (EHCP).
• Ensuring staff understand that tics are involuntary
• Updating school regularly, as tics can change over time
• Providing a consistent, calm approach across home and school

We always consider other interventions first before medication. Medication for tics is not always necessary, but it may be considered if other interventions do not work and tics cause pain, discomfort or distress, or are significantly getting in the way of daily life.

Medication aims to reduce severity of tics rather being able to eliminate tics completely. The impact of any benefits of medication should be regularly weighed against the side effects of treatment.

These medications affect the working of the brain and can impact how children feel, think and behave. Because children and young people with intellectual disability may find it harder to describe these changes, we must be especially careful about prescribing medication.

Your doctor will discuss medication with you and your child before making any changes.

Children with intellectual disability may still experience distress even if they cannot express it verbally.

A supportive approach includes:

• Being calm, consistent, and accepting
• Supporting communication in any form
• Helping your child feel understood and safe
• Creating a sense of predictability

You may wish to seek further advice if:

• Tics are causing distress
• Tics are interfering with daily life

Further Support

• Your local Child and Adolescent Mental Health Services
• Children and young people's mental health services - NHS
• Your school’s SENCO (Special Educational Needs Coordinator)
• Tourettes Action
• Kids Charity - a charity supporting disabled children and young people
• Seashell Trust - charity supporting children and young adults with complex learning difficulties, disabilities and additional communication needs across the UK