Probably the first thing that comes to mind when we talk about Gilles de la Tourette syndrome is the image of a person with tics and involuntarily saying swear words. Unfortunately, this image has contributed to oversimplifying the condition and creating one of the biggest misconceptions about this disorder. That is why, in this blog, we are going to learn a little more about this syndrome and try to understand what it means for people who live with it.
What Is Gilles de la Tourette Syndrome?
Gilles de la Tourette syndrome is a neurodevelopmental disorder that usually begins during childhood and is characterized by the presence of multiple motor tics and at least one vocal tic. It is estimated that approximately 0.3% to 0.8% of school-aged children have Tourette syndrome, although some cases are never diagnosed. In addition, it is more common in boys than in girls, with an approximate ratio of 3 or 4 to 1.
What are tics?
Tics are sudden, repetitive movements or sounds that are difficult to control. They may appear very occasionally or be repeated many times throughout the day, and their frequency, form, or intensity may change over time. They may even disappear for a while and then reappear. There are motor and vocal tics, both simple and complex.
- Simple motor tics involve brief movements and usually affect a muscle group or a specific part of the body. Some examples include repeatedly blinking, shrugging the shoulders, making faces, snapping the fingers, shaking the head, etc.
- Complex motor tics involve more elaborate movements and may combine different parts of the body. For example, spinning around while walking, performing a particular sequence of movements, touching objects, or carrying out a combination of facial and body movements.
- Simple vocal tics may involve sounds such as clearing the throat, sniffing or sniffling, grunting, or even repeating a syllable, word, or phrase.
- Complex vocal tics involve more elaborate combinations of sounds, words, or phrases. This category includes coprolalia, which consists of the involuntary utterance of socially inappropriate words or expressions. This is one of the best-known symptoms because of how Tourette is portrayed in films and television, but it only occurs in some people and is not necessary for a diagnosis.
How is Tourette syndrome diagnosed?
According to current diagnostic criteria, in order to diagnose Tourette syndrome, there must have been multiple motor tics and at least one vocal tic, although they do not have to occur at the same time.
In addition, the tics must have been present for more than one year from their onset, although during this period they may appear and disappear or change in type, frequency, and intensity.
The onset must occur before the age of 18, and the symptoms must not be better explained by the use of a substance or by another medical condition.
Diagnosis is primarily based on the clinical history and observation of symptoms. There is no single medical test that can diagnose it. That is why it is important to assess the type of tics, when they first appeared, how frequently they occur, and how they interfere with the person’s day-to-day life.
How do people with Tourette syndrome experience tics?
Sometimes people assume that the person is pretending or deliberately performing the tics, but nothing could be further from the truth. Tics are involuntary symptoms of the disorder and, although some people may learn to reduce or suppress them for short periods, they are not a behaviour that they can voluntarily control at all times.
In many cases, people describe an unpleasant sensation before the tic, which may be experienced as tension, pressure, tingling, itching, among other sensations. This sensation is known as a premonitory sensation or urge. For example, a person may notice increasing tension in their shoulders and feel that they need to move them. If they try to hold it back, the sensation may increase until they eventually perform the movement. When they finally perform the tic, they usually experience some relief. That is why simply telling someone to stop doing it is usually not a solution. We can think of something similar to trying not to blink for a long time: we can do it for a while, but maintaining it can become increasingly uncomfortable, and eventually we will do it.
Tics tend to occur more frequently during periods of stress, tiredness, anxiety, excitement, or heightened emotional arousal. They may also temporarily decrease when the person is highly focused on a particular activity, and some people can even temporarily suppress them in certain situations.
This may lead people to think that if someone can avoid tics while playing a video game, studying, or doing an activity that requires a great deal of concentration, then they should always be able to control them. But that is not how it works. The ability to temporarily suppress a tic does not mean that the person can freely decide when to have one and when not to. In addition, suppression can be demanding and may lead to increased tension or more tics afterward.
In many people, tics decrease significantly during adolescence and the early years of adulthood, although the course is different for each person and some people continue to experience them during adulthood.
What causes Tourette syndrome?
When a child is diagnosed with Tourette syndrome, it is common for questions to arise such as: Why does my child have Tourette syndrome? Did I do something wrong? Could I have prevented it? The truth is that there is no single cause that explains why it develops.
Current research suggests that Tourette syndrome is the result of a complex combination of genetic and neurobiological factors, together with other factors that may influence how the disorder manifests itself. We know that genetics plays an important role and that the syndrome tends to occur more frequently within some families. At the brain level, the role of dopamine and the involvement of different circuits related to movement, inhibition, attention, and the processing of sensations have been identified.
In addition, other factors related to the environment and the early stages of development are being investigated. For example, some studies have found associations between Tourette syndrome and certain complications during pregnancy or birth, low birth weight, smoking during pregnancy, or some infections. However, these associations do not mean that these factors are themselves the cause of Tourette syndrome, and more research is still needed to understand their role.
Therefore, following a diagnosis of Tourette syndrome, there is no need to look for a single event or parental behaviour that explains its onset. It is not the child’s fault or the family’s fault. It is a neurodevelopmental disorder involving different factors, and its exact cause is still not fully understood.
Tourette syndrome and other emotional or neurodevelopmental problems
Many people with Tourette syndrome also experience other associated difficulties or disorders. The most common include attention-deficit/hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD). Anxiety problems, learning difficulties, sleep disturbances, behavioural problems, or social difficulties may also occur.
In some cases, certain motor tics can cause pain, injuries, or repeated impacts. However, it is important to distinguish these behaviours from self-injurious behaviours associated with emotional difficulties. They do not always have the same underlying cause or require the same intervention.
Tics can also have a significant impact on social life, as having a tic at home is not the same as having one in the middle of a classroom full of classmates. Research shows that children and adolescents with Tourette syndrome may experience more bullying, social rejection, and stigmatization, as well as concerns about how others perceive their symptoms. In turn, fear that the tics will appear often generates greater tension and anxiety and a greater likelihood that they will occur.
For this reason, understanding the syndrome and having an environment that is aware of and accepting of the tics can be an important part of the person’s well-being.
How is Tourette syndrome treated?
There is currently no “cure” for Tourette syndrome that makes the disorder disappear permanently, but there are treatments that can help reduce the impact of tics and improve quality of life. Not everyone needs the same type of intervention, and in some cases, it may be enough to receive information and support and to monitor the progression of the tics.
When tics interfere with everyday life, one of the main treatment options is behavioural interventions, particularly CBIT (Comprehensive Behavioural Intervention for Tics), which helps the person recognize the sensations or signals that appear before a tic, identify situations in which tics tend to increase, and learn to perform an alternative response that makes the tic more difficult to occur. The goal is not simply to “endure” or suppress the tics, but to learn strategies for managing them in a more flexible way.
In some cases, especially when tics are severe or cause significant distress, medication may also be used. Medication does not necessarily eliminate tics, but it can help reduce their frequency or intensity. It should be assessed and supervised by a healthcare professional, considering the person’s age, symptoms, possible side effects, and individual characteristics.
When certain associated difficulties are present, working only on the tic is not enough. It may also be necessary to work on anxiety, self-esteem, social skills, and the ideas the person has developed about themselves.
Ultimately, treatment should be tailored to each person with Tourette syndrome. The choice will depend on each individual case: their tics, their age, any associated conditions, the impact the tics have on their life, and their own needs and preferences.
What can parents do?
Information and understanding from the surrounding environment are also essential for reducing stigma and facilitating the child’s adjustment.
If your child has tics, one of the most useful things you can do is try not to make every tic the center of the family’s attention. It may be tempting to constantly say: “Don’t do that.”, “Why are you making that noise?” or “Control yourself.” But tics are not a behavior that the child has chosen to perform and constantly reminding them of it can increase their worry and make them feel watched.
Instead, it may be more helpful to communicate messages such as: “I know you’re not doing it on purpose”, “It’s okay if the tic appears”, “Is there anything we can do to help you feel more comfortable?”.
It is also important to speak with the school when necessary. A teacher who understands the syndrome can interpret a vocal tic for what it is, rather than seeing it as a deliberate interruption of the class. In some cases, it may also be necessary to consider certain accommodations to reduce the impact that tics have in the school environment.
And, above all, it is important to remember that the child is much more than their tics. They have their interests, abilities, friends, fears, strengths, and their own personality. The goal should not be to make them stop making any unusual movement so that they can fit in, but rather to help them understand what is happening to them and live their life with as little impact as possible.
If you have questions about your son or daughter’s tics, believe that they may be interfering with their day-to-day life, or need guidance on how to support them, you can contact us. We can assess your situation, answer your questions, and guide you regarding the intervention options that are most appropriate for you.
Aina Fiol Veny
Psychologist Col. Nº B-02615
