Tics and Tourette's Syndrome
Most people will have heard of Tourette’s syndrome from films and TV. The media tends to show the most severe symptoms, such as uncontrolled swearing or tics that cause injuries, which can be worrying for families when a child or young person is newly diagnosed with tics. Thankfully these severe symptoms are very rare.
What are Tics?
Tics are sudden, rapid and repeated body movements or sounds that serve no purpose and are involuntary (children and young people are not doing them by choice).
The movements – called motor tics - can affect anywhere in the body although most typically affect the head and neck. Common examples of motor tics include rapid blinking, twitches in the neck and nose wrinkling. The sounds – called vocal tics – commonly involve sniffing, tutting or throat clearing noises.
Tics can be simple – involving just one muscle or making a noise - like the examples above. Tics can also be complex - lots of muscles moving together or spoken words – for example jumping on the spot or repeating words. Some tics can be hard to distinguish from normal movements whereas others can be very noticeable to other people.
Although tics vary from person to person, they often share certain traits.
Tics often occur more frequently in predictable settings or situations. Some children will have lots of tics when watching TV or playing video games, others will experience more tics at home than at school. Although these situations are different from child to child most families can pick out the context in which their child is most likely to tic.
Children and young people often get a ‘premonitory urge’, an odd or unpleasant sensation, that builds up until the child tics which relieves the sensation. Some children describe this as a sense of pressure, or like the feeling then get if they need to cough or scratch an itch. Other children find it very difficult to describe.
Although tics are involuntary in the sense that people do not choose to do them, they often are able to suppress or ‘hold in’ a tic if they feel they need to. This does not stop the urge building up and people often find it hard to supress a tic for extended periods of time.
It can be hard to describe what it feels like to have a tic, but try the following exercise:
Try to not blink, for as long as you can. The longer you don’t blink, the more you want to blink, and that feeling is like what it feels like to have an urge to tic.
Here are some examples of tics:
Motor Tics
1. Simple Movements (Involving a Single Muscle Group)
These are quick, involuntary movements that engage only one muscle group:
- Nose wrinkling
- Head twitching or bobbing
- Eye blinking
- Shoulder shrugging
- Arm jerking
2. Complex Movements (Involving Multiple Muscle Groups)
These involve coordinated actions using more than one muscle group:
- Touching objects repeatedly
- Skipping
- Facial grimacing while sticking the tongue out
- Hopping
- Mimicking others' movements
Vocal Tics
1. Simple Vocal Tics (Involving One Simple Sound)
These tics are brief and involve a single sound:
- Coughing
- Throat clearing
- Grunting
- Barking
- Hissing
2. Complex Vocal Tics (Meaningful Speech)
These tics involve more structured speech patterns and can include:
- Repeating words and phrases out of context (which may include socially unacceptable words or phrases)
- Echoing others' speech (echolalia)
- Calling out words or phrases
- Swearing (coprolalia)
Does my child have Tics?
Tourette’s syndrome is just one of several names doctors use to describe a child or young person’s pattern of tics. Although doctors use different labels, they think that tic disorders represent points on a spectrum, and all share the same underlying cause. The diagnosis doctors make is based on the type of tics a person has and how long they have had them for.
- If a child has had tics of any kind for less than 12 months, we call this provisional tic disorder.
- If they have had only motor tics and these have been present for more than 12 months, we call this chronic motor tic disorder. Chronic vocal tic disorder is rare.
- Tourette’s syndrome is what we call it when a child or young person has both motor tics and vocal tics that have been present for over a year.
Children with any diagnosis may experience only mild tics that do not bother them much or may experience symptoms that require support to manage.
Why does my child have Tics?
The underlying cause for tics is not yet fully understood. Some studies suggest this is due to how the brain forms circuits across its different parts and some suggest it is to do with the chemicals the brain uses to send signals. More evidence is needed before we can be sure.
A child’s genetics play a role. Around half of children who develop tics will have a close relative who also had tics. However, having tics does not mean you will pass this on to your child and around half of all children with tics do not have anyone in the family who has it.
Children with tic disorders often have other conditions such as obsessive-compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD) that likely share underlying causes.
It has been considered whether infections with Group A strep could cause tics. A recent large study from across Europe found no evidence that this was the case in tic disorders like Tourette’s syndrome.
Is Tourette's syndrome linked to any other conditions?
Children with Tourette’s syndrome are more likely to have one or more of the following conditions
- ADHD
- Obsessive compulsive disorder
- Anxiety or depression
- Challenging behaviours or rage attacks
When should you worry?
12-18 months
12-18 MONTHS
Contact your health visitor or GP if your baby is 12-18 months and they…
- Have lost skills which they could do before
- Feel very stiff, for example:
- Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
- Find it difficult to change their position on their own
- You find it difficult to move your baby’s arms or legs, making it tricky to change their nappy or clothes
- Feel very floppy when they are awake
- Move their arms or legs in repetitive, jerky, or strange ways
- Use one side of their body more than the other, for example:
- Lean to the side when they sit
- Drag their leg or foot when crawling or walking
- Use one arm to pull to stand more than the other
- Rarely use one of their arms to pick up toys, or eat and drink
- Finds it hard to stand or walk, for example:
- Can’t pull to stand
- Fall over a lot when standing still
- Doesn’t cruise (walk while holding on to furniture)
- Walk on their tiptoes a lot
18-24 months
18-24 MONTHS
Contact your health visitor or GP if your baby is 18-24 months and they…
- Have lost skills which they could do before
- Feel very stiff, for example:
- Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
- Find it difficult to change their position on their own
- You find it difficult to move your baby’s arms or legs, making it tricky to change their nappy or clothes
- Feel very floppy when they are awake
- Move their arms or legs in repetitive, jerky, or strange ways
- Use one side of their body more than the other, for example:
- Lean to the side when they sit
- Drag their leg or foot when crawling or walking
- Use one arm to pull to stand more than the other
- Rarely use one of their arms to pick up toys, or eat and drink
- Find it hard to balance when standing still, or fall over a lot
- Can’t walk by themselves
- Walk on their tiptoes a lot
- Are suddenly unsteady when walking
2 years
2 YEARS
Contact your health visitor or GP if your baby is 2 years and they…
- Have lost skills which they could do before
- Feel very stiff, for example:
- Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
- Find it difficult to change their position on their own
- You find it difficult to move your child’s arms or legs, making it tricky to change their nappy or clothes
- Feel very floppy when awake
- Move their arms or legs in repetitive, jerky, or strange ways
- Use one side of their body more than the other, for example:
- Lean to the side when they sit
- Drag one leg or foot behind them when crawling or walking
- Rarely use one of their arms to play, eat and drink
- Find it hard to balance when standing still or fall over a lot
- Can’t walk by themselves
- Mostly walk on their tiptoes
- Are suddenly unsteady when walking
- Haven’t started to run
- Move from laying down or sitting to standing by using their hands to push off the ground, and “walk” their hands up their legs until they are standing
3 years
3 YEARS
Contact your health visitor or GP if your baby is 3 years and they…
- Have lost skills which they could do before
- Feel very stiff, for example:
- Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
- Find it difficult to change their position on their own
- You find it difficult to move your child’s arms or legs, making it tricky to change their clothes
- Feel very floppy when awake
- Move their arms or legs in repetitive, jerky, or strange ways
- Use one side of their body more than the other, for example:
- Lean to the side when they sit
- Drag one leg or foot behind them when walking
- Rarely uses one of their arms to play, eat and drink
- Find it hard to balance when standing still or fall over a lot
- Can’t walk by themselves
- Mostly walk on their tiptoes
- Are suddenly unsteady when walking
- Have not started to jump or run
- Move from laying down or sitting to standing by using their hands to push off the ground, and “walk” their hands up their legs until they are standing
4 years
4 YEARS
Contact your health visitor or GP if your baby is 4 years and they…
- Have lost skills which they could do before
- Feel very stiff, for example:
- Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
- Find it difficult to change their position on their own
- Find it tricky to change their clothes
- Feel very floppy when awake
- Move their arms or legs in repetitive, jerky, or strange ways
- Use one side of their body more than the other, for example:
- Lean to the side when they sit
- Drag one leg or foot behind them when walking
- Rarely use one of their arms to play, eat and drink
- Find it hard to balance when standing still
- Suddenly become unsteady when walking
- Find it hard going upstairs or uphill
- Trip or fall a lot
- Walk on tiptoes most of the time
- Feel pain in their arms or legs
- Move from laying down or sitting on the floor to standing by using their hands to push off the ground, and “walk” their hands up their legs until they are standing.
5 years
5 YEARS
Contact your health visitor or GP if your baby is 5 years and they…
- Have lost skills which they could do before
- Feel very stiff, for example:
- Hold their arms and legs in the same position, such as always pulling their arm to their chest, or always crossing their legs
- Find it difficult to change their position on their own
- Find it tricky to change their clothes
- Feel very floppy when awake
- Move their arms or legs in repetitive, jerky, or strange ways
- Use one side of their body more than the other, for example:
- Lean to the side when they sit
- Drag one leg or foot behind them when walking
- Rarely uses one of their arms to play, eat and drink
- Find it hard to balance, or trip or fall a lot
- Persistently walk on tiptoes
- Suddenly become unsteady when walking
- Feel pain in their arms or legs
- Move from laying or sitting on the floor to standing by using their hands to push off the ground, and “walk” their hands up their legs until they are standing.
15 months
Your Child By Fifteen Months
Social/Emotional Milestones
- Copies other children while playing, like taking toys out of a container when another child does
- Shows you an object she likes
- Claps when excited
- Hugs stuffed doll or other toy
- Shows you affection (hugs, cuddles, or kisses you)
Language/Communication Milestones
- Tries to say one or two words besides “mama” or “dada,” like “ba” for ball or “da” for dog
- Looks at a familiar object when you name it
- Follows directions given with both a gesture and words. For example, he gives you a toy when you hold out your hand and say, “Give me the toy.”
- Points to ask for something or to get help
Cognitive Milestones (learning, thinking, problem-solving)
- Tries to use things the right way, like a phone, cup, or book
- Stacks at least two small objects, like blocks
Movement/Physical Development Milestones
- Takes a few steps on his own
- Uses fingers to feed herself some food
18 months
Your Child By Eighteen Months
Social/Emotional Milestones
- Moves away from you, but looks to make sure you are close by
- Points to show you something interesting
- Puts hands out for you to wash them
- Looks at a few pages in a book with you
- Helps you dress him by pushing arm through sleeve or lifting up foot
Language/Communication Milestones
- Tries to say three or more words besides “mama” or “dada”
- Follows one-step directions without any gestures, like giving you the toy when you say, “Give it to me.”
Cognitive Milestones (learning, thinking, problem-solving)
- Copies you doing chores, like sweeping with a broom
- Plays with toys in a simple way, like pushing a toy car
Movement/Physical Development Milestones
- Walks without holding on to anyone or anything
- Scribbles
- Drinks from a cup without a lid and may spill sometimes
- Feeds himself with his fingers
- Tries to use a spoon
- Climbs on and off a couch or chair without help
2 years
Your Child By Two Years
Social/Emotional Milestones
- Notices when others are hurt or upset, like pausing or looking sad when someone is crying
- Looks at your face to see how to react in a new situation
Language/Communication Milestones
- Points to things in a book when you ask, like “Where is the bear?”
- Says at least two words together, like “More milk.”
- Points to at least two body parts when you ask him to show you
- Uses more gestures than just waving and pointing, like blowing a kiss or nodding yes
Cognitive Milestones (learning, thinking, problem-solving)
- Holds something in one hand while using the other hand; for example, holding a container and taking the lid off
- Tries to use switches, knobs, or buttons on a toy
- Plays with more than one toy at the same time, like putting toy food on a toy plate
Movement/Physical Development Milestones
- Kicks a ball
- Runs
- Walks (not climbs) up a few stairs with or without help
- Eats with a spoon
2.5 years
Your Child By Thirty Months
Social/Emotional Milestones
- Plays next to other children and sometimes plays with them
- Shows you what she can do by saying, “Look at me!”
- Follows simple routines when told, like helping to pick up toys when you say, “It’s clean-up time.”
Language/Communication Milestones
- Says about 50 words
- Says two or more words together, with one action word, like “Doggie run”
- Names things in a book when you point and ask, “What is this?”
- Says words like “I,” “me,” or “we”
Cognitive Milestones (learning, thinking, problem-solving)
- Uses things to pretend, like feeding a block to a doll as if it were food
- Shows simple problem-solving skills, like standing on a small stool to reach something
- Follows two-step instructions like “Put the toy down and close the door.”
- Shows he knows at least one color, like pointing to a red crayon when you ask, “Which one is red?”
Movement/Physical Development Milestones
- Uses hands to twist things, like turning doorknobs or unscrewing lids
- Takes some clothes off by himself, like loose pants or an open jacket
- Jumps off the ground with both feet
- Turns book pages, one at a time, when you read to her
3 years
Your Child By Three Years
Social/Emotional Milestones
- Calms down within 10 minutes after you leave her, like at a childcare drop off
- Notices other children and joins them to play
Language/Communication Milestones
- Talks with you in conversation using at least two back-and-forth exchanges
- Asks “who,” “what,” “where,” or “why” questions, like “Where is mommy/daddy?”
- Says what action is happening in a picture or book when asked, like “running,” “eating,” or “playing”
- Says first name, when asked
- Talks well enough for others to understand, most of the time
Cognitive Milestones (learning, thinking, problem-solving)
- Draws a circle, when you show him how
- Avoids touching hot objects, like a stove, when you warn her
Movement/Physical Development Milestones
- Strings items together, like large beads or macaroni
- Puts on some clothes by himself, like loose pants or a jacket
- Uses a fork
4 years
Your Child By Four Years
Social/Emotional Milestones
- Pretends to be something else during play (teacher, superhero, dog)
- Asks to go play with children if none are around, like “Can I play with Alex?”
- Comforts others who are hurt or sad, like hugging a crying friend
- Avoids danger, like not jumping from tall heights at the playground
- Likes to be a “helper”
- Changes behavior based on where she is (place of worship, library, playground)
Language/Communication Milestones
- Says sentences with four or more words
- Says some words from a song, story, or nursery rhyme
- Talks about at least one thing that happened during her day, like “I played soccer.”
- Answers simple questions like “What is a coat for?” or “What is a crayon for?”
Cognitive Milestones (learning, thinking, problem-solving)
- Names a few colors of items
- Tells what comes next in a well-known story
- Draws a person with three or more body parts
Movement/Physical Development Milestones
- Catches a large ball most of the time
- Serves herself food or pours water, with adult supervision
- Unbuttons some buttons
- Holds crayon or pencil between fingers and thumb (not a fist)
5 years
Your Child By Five Years
Social/Emotional Milestones
- Follows rules or takes turns when playing games with other children
- Sings, dances, or acts for you
- Does simple chores at home, like matching socks or clearing the table after eating
Language/Communication Milestones
- Tells a story she heard or made up with at least two events. For example, a cat was stuck in a tree and a firefighter saved it
- Answers simple questions about a book or story after you read or tell it to him
- Keeps a conversation going with more than three back-and-forth exchanges
- Uses or recognizes simple rhymes (bat-cat, ball-tall)
Cognitive Milestones (learning, thinking, problem-solving)
- Counts to 10
- Names some numbers between 1 and 5 when you point to them
- Uses words about time, like “yesterday,” “tomorrow,” “morning,” or “night”
- Pays attention for 5 to 10 minutes during activities. For example, during story time or making arts and crafts (screen time does not count)
- Writes some letters in her name
- Names some letters when you point to them
Movement/Physical Development Milestones
- Buttons some buttons
- Hops on one foot
Advice and Guidance
How is Tourette's diagnosed?
There is no blood test or brain scan available to diagnose Tourette’s syndrome. A doctor will need to ask all about the movements and noises that your child makes, ask questions to help them rule out other causes of unusual movements, and examine your child in order to make a diagnosis of a tic disorder.
If you can catch a video of your child displaying any concerning movements or noises, this can be helpful for doctors when making a diagnosis but do not worry if this is not possible.
Will my child's symptoms change?
Tics are very common in childhood. It is thought that up to 1 in 5 children may develop tics that settle down again very quickly at some point in their early life.
If a child has had tics for over a year it is likely they will continue to have tics into adolescence.
It is typical for children and young people to have periods where they have lots of tics (waxing) and then settle to having fewer (waning). These ups and downs may be triggered by periods of excitement (Christmas, summer holidays) or stress (exams), illness, or changes to routine but there is not always an obvious cause.
In most people with Tourette’s syndrome tics start at around 3 to 7 years of age and are typically less severe at first. Tics can become more bothersome and complex as children reach the top end of primary school/ early secondary school. Typically, symptoms then tend to improve as teenagers get older with 4 out of 5 seeing a significant improvement in their tics by the time they reach adulthood. Many people grow out of their tics entirely.
When to see a GP
Tics are not usually serious, and they do not damage the brain. Sometimes they can disappear as quickly as they appear.
See a GP if you're concerned about your or your child's tics, you need support or advice, or the tics:
- begin before your child is 3 years of age
- occur very regularly, or become more frequent or severe
- are associated with a temporary loss of awareness
- are associated with you child is losing skills that they previously had (developmental regression)
- cause emotional or social problems, such as embarrassment, bullying or social isolation
- cause pain or discomfort (some tics can cause the person to accidentally hurt themselves)
- interfere with daily activities (such as walking, eating, drinking), school or work
- are accompanied by anger, depression or self-harm
Management of Tics
Many children and young people with tics will feel that they are able to manage with them without needing specific medical treatments. Education and self-help tips are often very helpful for most people. It is important they are helped to understand their condition and feel supported at home and at school. Your child may find it helpful to have their teacher explain about the condition to the class.
Specific treatments would be considered if tics are having a significant impact on a child or young person’s daily life or emotional well-being.
The main psychological therapies for tics are:
- Habit Reversal Therapy
This aims to help the young person develop a behavior/action that is opposite to the Tic (that cannot happen at the same time as the tic) until the urge to Tic decreases
- Comprehensive Behavioural Intervention for Tics (CBiT)
A set of behavioural techniques to help learn skills to reduce Tics
- Exposure with Response Prevention (ERP)
This aims to help you, or your child get used to and tolerate the unpleasant sensations that are often felt just before a tic, which can stop the tic occurring
There are also medicines that can help reduce tics which are used occasionally in severe cases although most people find they do not stop them entirely. These medications require close monitoring and can only be started by a specialist within a Child and Adolescent Mental Health Service (CAMHS). Medication can be used for periods when symptoms are disruptive and then stopped again when things improve. These may be used alongside psychological therapies or after trying these therapies unsuccessfully.
If a child or young person with Tourette’s syndrome also has a commonly occurring related condition like OCD or ADHD, then getting the appropriate support for that condition will often be beneficial to tic control.
What can I do to help?
When a child has tics, worry or embarrassment about the tic can make them increase in intensity of frequency. There are things you can try to reduce the impact of the tics:
- Try to ignore tics when they are occurring. Drawing too much attention to a tic may make it worse.
- Do not tell your child off when their tic occurs
- Be mindful that people can sometimes hold their tics in (suppress them) throughout the day and let them out when they are in the home environment
- Reassure your child that everything is OK and there is no reason to feel embarrassed
- It can be helpful for a young person’s peers to learn about their tics, so that your child feels less pressure to hide or suppress them. Teachers can support in this.
- Let those around you (i.e. close family or friends) know about your child’s tics as well as what helps and doesn’t help
- Speak to your child’s school so that management approaches can be agreed between you.
Tics can be made worse if the person is stressed, nervous, anxious or excited. Tics can also be triggered by certain things, which may be individual to the child/young person, e.g. temperature or video games. Tiredness can also impact upon tics.
To combat tiredness, try the following:
- Have a consistent bedtime routine helps to promote good sleep. It is also helpful to get up at a similar time each day. This helps your body to maintain a regular sleep cycle.
- Warm baths an hour or so before bed can help to relax the child and promote the bedtime routine. A bath can help raise body temperature, causing you to feel sleepy once your temperature drops again.
- Avoid naps
- Once your child is in bed encourage your child to read or listen to some relaxing music. Keep lights dim. Avoid doing activities that are too stimulating.
- Avoid energy drinks and caffeine
- Avoid screens in your child’s bedroom i.e., Tablets, smartphones, television
To combat anxiety, try the following:
- Exercise can reduce the intensity of the emotions felt, allowing your child to clearly deal with the issue more calmly.
- Encourage your child to spend time doing the things they enjoy the most
- Breathing exercises can help calm anxiety. Slow deep breathing, or a Progressive Muscle Relaxation can be beneficial.
- Anxiety about tics can often be reduced by talking more freely about tics to others, letting others know how to respond, and developing greater self-confidence.
Motor Tics:
- Arm/Hand Tics: Engage in activities that utilize your hands, such as playing with clay, origami, or other hands-on tasks.
- Banging/Tapping:
- Try placing something soft on hard surfaces where you tend to tap, like a foam block, to prevent injury.
- Use different types of fiddle toys such as fidget spinners, fidget cubes, or poppets to keep your hands engaged.
- Eye Tics: Practice slow, intentional blinking to help control eye tics.
- Full Body Movements: Warm-up exercises in the morning and after periods of inactivity can be helpful in managing full-body tics.
- Head Shaking/Neck Jerking: Heat therapy, like applying a wheat germ pillow or a hot water bottle, can soothe painful areas.
- Mouth Tics: Try using chewable toys, lollies, or chewing gum if age-appropriate to manage mouth tics.
Vocal Tics:
- Consciously breathing in through the mouth and out through the nose can help calm vocal tics.
Further Resources
Tourette’s action is a charity dedicated to support and research for tics and Tourette’s syndrome. Their website has a range of information about tics and Tourette’s syndrome for families, children and young people. They also have a fantastic section of the website dedicated to teachers, which is full of helpful resources: Advice for teachers (tourettes-action.rg.uk) .
Books:
For young people:
- I Tic – Abby Hargrove (Recommended 6 yrs +)
- Can I tell you about Tourette syndrome? - Mal Leicester (recommended 9 yrs +)
- The Tourette’s Survival Kit: Tools for Young Adults with Tics - Tara Murphy and Damon Millar. (15 yrs +)
- Nix your tics – B. Duncan McKinlay (15 yrs +)
- Welcome to Biscuit Land: A Year in the Life of Touretteshero – Jessica Thom, a YouTuber with Tourette’s Syndrome (adults)
- Coping with Tourette Syndrome: A Workbook for Kids with Tic Disorders – Sandra Buffolano (workbook, 10 yrs +)
For parents/carers:
- Tic Disorders: A Guide for Parents and Professionals – Uttom Chowdhury and Tara Murphy
- A Family's Guide to Tourette Syndrome – John T Walkup, Mink, Black et al
Many thanks to Dr Laura Bohane (Child Psychologist) and Dr Emma Blake (Paediatric Consultant, IoW), as well as the team from the North East and North Cumbria Healthier Together programme.
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