Tourette's Syndrome & Tic Disorders
Tourette syndrome is a neurological, genetic condition that causes individuals to make involuntary sounds and movements called tics. These tics usually start in childhood and are often linked to other co-morbid conditions which individuals have alongside their tics.
More often than not the co-morbid conditions present themselves as/ but not limited to, obsessive compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), Anxiety Disorder and/ or learning difficulties. These and other co-morbid conditions are discussed more in the ‘co-morbid’ section.
‘Tics’ really are just the tip of an iceberg of a very complex and misunderstood condition, the co-morbidities that exist with Tourettes are often more complex for the individual then the tics themselves.
FACT: 90% of people with Tourettes are NOT compelled to swear.
A large percentage of individuals with TS often find that their tics and other symptoms usually improve after several years and sometimes go away completely by late teens/ early adult hood. There's no cure for Tourette syndrome, but there is treatment that can help manage symptoms.
Tourette Syndrome is part of a spectrum of Tic Disorders. Within the spectrum you will hear of:
Tourette Syndrome ~ this is when you have multiple motor and one or more vocal tics present for a minimum of one year. These can wax & wane in this time but must be present.
Transient tic disorder ~ (also known as provisional tic disorder) ~ this is where you have motor tics that are usually confined to the face and neck, however it has been known to affect other body parts. These type of tics usually last a few weeks or months.
Chronic tic disorder ~ this is where your tics may be blinking, sniffing of neck movements, the tics tend to persist instead of being transitory. These types of tics last more than a year.
Non specified tic disorder ~ tics are present but do not meet the criteria for any specific tic disorder.
Individuals with Tourette syndrome experience a strong urge before they tic, the only way to stop the urge is to tic. Imagine an itch, it gets worse and worse and worse until you scratch it.
These feelings are known as premonitory sensations. Premonitory sensations are only relieved after the tic has been carried out.
Some individuals can supress their tics, this can usually only be done for a short while, individuals may choose to do this in certain social situations, like in a classroom. It takes a lot of concentration and can be very tiring however it gets easier with practise.
To get a diagnosis, you will need a referral from your GP to a specialist, such as a neurologist. To be diagnosed with Tourette syndrome you need to have had several tics for at least a year. These must consist of at least two motor tics and one vocal tic. By getting diagnosed you open doors to support and understanding, resulting in acceptance and access to treatments where needed.
Tourette's & School
Despite Tourette's and Autism having the same prevalence, many schools and teachers are not aware of the impact Tourettes can have on a child with Tourette Syndrome. Some basic information on Autism is usally learnt within the core foundations of teaching, however many teachers will know absolutely nothing about Tourette's until the day they end up with a ticcer in their class.
1:1 assessments are available in the England, these involve a 1 hour observation and a report, see services for more details.
please see below some tips for your child's teachers. downloadable/ printable version and information sheet available in the shop
Tips for the classroom
Children with Tourette’s often struggle with accessing the curriculum. However, it’s important to be aware that Tourette Syndrome does not affect a person’s IQ and the barriers to learning come from anxiety around tics, and the tics themselves.
Even if you feel tics are mild or not present, it is likely that the child is suppressing them. If you can’t see them, still be mindful of the challenges they are facing as whether tics are mild or they’re suppressing them, this is exhausting and very distracting for them.
Vocal and motor tics can affect reading, writing and focus to name a few.
Tics are so much more then motor movements and vocal sounds; other forms of tics include:
contextual/ conversational tics, these tics can be relevant, appropriate and in context. These can appear to look and sound as though the child is ‘calling out’, or ‘answering back’.
visual tics, these can involve looking at objects differently (squinted eyes, holding object at an angle), counting patterns, lines on walls, windows and floors.
Intrusive thought tics, these although not visible are a very common tic form where thoughts are on repeat and can often have a negative or inappropriate vibe to them.
Blocking tics, this is where a person cannot either speak or move (or both) these are due to prolonged tonic or dystonic tics that interrupt motor activity.
Where possible have the child sat at the back or side of the class, where they are not in the direct view of their peers.
Set regular movement breaks throughout the school day, where the child can go run an errand, or go to a specific room to allow his tics out. This room should be staffed ideally, so they can remind the child to release their tics for a few minutes before returning to class. If there isn’t a staffed room, please make a laminated prompt sheet that reminds them of the purpose of being there. Tic release can also be done whilst running errands such as walking to the reception office.
Assembly- these can be extremely stressful, thus causing a tic increase. Triggers can include but are not limited to, having to sit still, in silence, amongst peers, florescent lighting, and anxiety. Where possible, children with tics should be exempt from assembly.
Use a traffic light system. This can be done using red and green laminated square card. Work out a system between you, where the child has the green card showing on their desk when they’re feeling good, then they can turn it over to red if they’re struggling at all. Have an agreement between you both where the child knows that if they show red, you will support them. (discuss with them, what ‘supporting them’ will entail) this maybe sending them out to run an errand, having a chat after lesson etc.
The majority of children with Tourette Syndrome, also have co-occurring conditions that have a symptomology of needing to move. These conditions could include but are not limited to ADHD, anxiety, sensory seeking and lastly a ‘side effect’ from tic suppression. Some strategies that can support this include but again are not limited to:
- Wobble cushion: There has been much research into kids with ADHD and active sitting. In 2003 a study was published in the American Journal of Occupation Therapy that found that in students with ADHD, sitting on therapy balls (swiss balls) improves behaviour and productivity. It was discovered that students using ball chairs were better able to sit still, focus and write more. Then in 2007 the Mayo Clinic in Rochester echoed these sentiments by finding that the ability to move around more while sitting made the students more attentive, the study believing this is due to kids being able to burn off excess energy by bouncing or moving.
-Chew toys: chew toys are great not only for sensory issues but also for redirecting vocal tics.
-TheraBand’s: these are great for tying around the legs of chairs for the child to lightly bounce their legs upon, causing the feeling of movement throughout the whole body whilst lightly burnings energy.
Fidget toys: Many children benefit from ‘fidget’ toy’s but these should not be a distraction. By replacing distracting ‘fidget’ toys with less malleable objects such as chunks of blue tac. will give a more fulfilling sensation throughout their hands, without diverting their attention.
As already stated, Tourette’s itself doesn’t affect your intelligence however the tics can be very detrimental to learning, with this in mind your expectations should be altered. This does not mean the level of work should be reduced but instead the quantity of work. Both reading and writing can be hindered dramatically so this can make it almost impossible for some children to get their thoughts on paper.
Other aids: ideally children will be given their own room for exams, with extra time allocated, there should also be a ‘stop the clock’ option. Computers and scribes are also a great aid, these can be used for all areas of work.
Exercise for parents & teachers understand the impact of tics & school below
Helping teachers understand how tics can impact a child ability to achieve the same amount of work as their peers.
Needed: pen or pencil, paper, patience.
Objective, to understand that despite their intelligence, expecting the same quantity of work as their peers is a very high expectation.
Instruction: “I’m going to get you to copy the following passage down from the next slide. Whilst you copy this down, I want you to remember capital letters, punctuation, finger spaces etc. I also want this work to be carried out in silence. You have only 2 minutes to do this.
If you finish before the 2 minutes is up, remain silent and sit still.
I want you to also ‘tic’ at the same time!!
Watch the video and follow the instructions and see how you manage.
After the exercise, think about how much work you achieved, how frustrated you feel, how were your anxiety levels? Do you feel empowered and like you have learnt something or do you feel down, stressed, anxious and like you’re failing the lesson objective? Our kids need reasonable adjustments made at school, the expectation of the amount of work should be reduced. Remember though, reducing the expectations of the amount of work is very different to reducing the level of work. The level of work should not be reduced due to their tics. I.e.: if you’re teaching grade 5 math's and the expectation is to work through 25 questions. The child should still be given grade 5 math's, but the expectation of the number of questions should be reduced.
Tourette Syndrome & Common Co-Occurring Conditions
Tourettes is a disorder in its own entity however in a very high proportion of Tourettes sufferers they will also suffer with at least one co-morbid condition.
Attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD) and Anxiety are the most common but not limited to comorbidities that go with Tourette syndrome (TS).
ADHD is the most commonly co-occurring condition with Tourette Syndrome (TS) with around 20 – 30% of children with ADHD also having a tic disorder.
ADHD is when you have difficulty with paying attention, is much more energetic than others, and is unable to control certain impulses.
ADHD is also diagnosed around the same age as TS, and also has a higher prevalence in boys.
ADHD is caused by the movement and ‘braking’ systems in the individuals brain maturing more slowly.
As with TS, not every child with ADHD will carry their symptoms through to adulthood.
Symptoms mostly start in childhood. The key thing to remember is that someone with ADHD is not behaving badly on purpose. The area in their brain which is responsible for self-control takes longer to mature than in children who don’t have ADHD.
Symptoms can range from mild to challenging. Symptoms can be specific to certain environments like home or school.
ADHD may include, difficulty sitting still, Constant fidgeting, moving, talking, making noises, Low patience threshold for example, they may find it hard to wait in a queue or listen, this can also result in them interrupting others. They may also say and do things without thinking through the consequences due to their immature impulse regulations.
Types of ADHD & some examples of their characteristics:
Hyperactivity: noisy in play, fidgety, struggle to stay seated, always on the go, excessive talking.
Impulsivity: difficulty waiting turns, interrupts conversations, blurts out answers before question is completed.
Inattention: forgetful, poor organisation, distracted, loses things, appears to not listen, avoids tasks that require lots of attention, fails to complete tasks, makes careless mistakes.
OCD is where someone experiences recurrent obsessions and/or compulsions that are severe enough to effect everyday life. These obsessions are usually anxiety driven.
The symptoms of OCD are obsessions and compulsions.
Obsessions are uncontrollable thoughts, images, impulses, worries, fears or doubts. They are often intrusive (cause disruption and annoyance), unwanted and can be frightening for the person experiencing them.
OCD sufferers will often know that these thoughts are irrational, but this doesn’t mean they can control them. The most common obsessional thoughts are worrying about the safety of others or worrying that everything needs to be arranged symmetrically so that it is ‘just right’.
Compulsions are purposeful behaviours and actions that are performed in an attempt to relieve the anxiety caused by obsessional thoughts. Often the behaviour is carried out according to certain rules, or will be performed as a ritual.
Relief provided by compulsions are only temporary and often reinforce the original obsession. Common compulsions include checking, counting and touching.
The condition affects both children and adults and it is estimated that as many as 12 in every 1,000 people are affected by OCD in the UK.
OCD and Tourette Syndrome (TS)
It is thought that approximately one-third of individuals with TS experience recurrent obsessive-compulsive symptoms. (Khalifa and von Knorring 2005; Leckman et al. 1997)
It can be difficult to tell the difference between a compulsion and a compulsive tic. A compulsion is typically a behaviour that is carried out in an attempt to relieve anxiety that is caused by an intrusive or obsessional thought.
A compulsive tic is more associated with a physical sensation and needs to be performed to relieve the urge sensation.
Anxiety is common in most children at some part of their childhood. Anxiety is an emotion that gives us an un pleasant feeling with in our body.
Anxiety is often temporary in children and can vary at different parts of their childhood.
Types of Anxiety & some examples of their characteristics
Generalised anxiety disorder: Excessively worrying about a range of different things.
i.e. future, family, friends or themselves, they may have difficulty in relaxing, they may also engage in challenging behaviour if expressing their feelings isn’t possible
Separation anxiety disorder: Children often go through this as a typical milestone, this anxiety appears when their parent leaves the room, but this usually stops around 30months old. If it’s still present at school age it becomes a disorder.
Phobias: An irrational fear of something specific, these emotions are to the extreme and very intense. Individuals may avoid certain situations that enhance this fear. Children may engage in challenging behaviour if they cannot communicate their fear to people.
Anxiety is a normal, and is a part of our survival skills, however the level of these fears and anxieties are predetermined by our genes. Anxiety can also be learned by children watching parents who are anxious in certain situations. Lastly anxiety can also be brought on by trauma.
Anxiety and Tourette syndrome are closely interlinked, they form a cycle. Anxiety of people seeing tics results in an increase of tics, increased tics results in an increase of anxiety and so on.
Medical term: Disinhibited behaviours are actions which seem tactless, rude, or even offensive. They occur when people do not follow the usual social rules about what or where to say or do something.
Disinhibition is the inconsistent ability to inhibit behaviours despite knowing they are inappropriate. Individuals experience movements, swearing, emotional outbursts, rage, infantile behaviours, noises, laughter and so on. These can all be either contextual or not.
Essentially, disinhibition is when it becomes extremely difficult to use learned inhibitory skills “in the moment”.
It is important to know that these behaviours are part of Tourette Syndrome and they are not deliberate. Individuals with Tourette Syndrome are often unable to control their behaviour and can often appear to be overstepping the mark and impulsive.
Disinhibition can impact all co-occurring conditions. OCD symptoms, sensory issues, Tics urges, emotional regulation, and inappropriate language to name a few.
Even though many individuals will know that what they are doing/ saying is inappropriate at the time, they are not able to put on the brakes to these behaviours.
Understanding Disinhibition is essential in understanding Tourette’s!
Due to the inconsistency of these behaviours the child may appear as being disrespectful, inappropriate, not “socially acceptable,” having emotional outbursts, showing silliness, have contextual swearing, or even rage.
The disinhibition element of Tourette's can be a big problem within school, I bet all of your children can tell you a time they have been "pulled" up on a behaviour that wasn't necessarily a tic but they couldn’t help it.
Disinhibited behaviour can place enormous strain on families and educators.
It is also important to know, that just like Tourette’s, Disinhibition can also be suggestible. So, reminders of behaviours are more likely to cause the undesired behaviours.
PANDAS is a condition seen in the paediatric population consisting of tics or obsessive compulsive disorder exacerbated or brought on by a common bacterial infection called Group A streptococcus (GAS).
PANDAS symptoms typically start abruptly, almost as if a switch has been thrown. Symptoms include tics, sleep disturbance, obsessive compulsive behaviour, deterioration in handwriting, eating disorders (including anorexia but the problems appear to be more centred on difficulty in coordinating swallowing), behavioural regression and urinary incontinence. By definition these occur following a streptococcal infection which then results in the stimulation of antibodies which stimulates the part of the brain involved in movement and behaviour regulation (the basal ganglia). Examination of the child reveals a child who is “trapped” or “psychologically burdened”. They may have reduced muscle power and may show abnormal movements.
Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) is defined by the rapid onset of obsessive–compulsive disorder (OCD) or eating restrictions and comorbid symptoms from at least two of seven categories:
Anxiety (particularly separation anxiety)
Emotional lability or depression
Aggression, and/or severely oppositional behaviours
Deterioration in school performance related to ADHD-like behaviours, memory deficits, and cognitive changes
Sensory or motor abnormalities
Somatic signs and symptoms, including sleep disturbances, enuresis, or urinary frequency (Swedo et al. 2012; Chang et al. 2015). Acute onset cases that are triggered by Group A streptococcal infections may meet diagnostic criteria for both PANS and PANDAS.
For more information on PANDAS, Click here.