Tourette’s Syndrome: Complete guide to understanding and treating it

Tourette’s syndrome is a type of tic disorder that severely incapacitates the person. What usually draws attention are the cases in which these people repeatedly and indiscriminately insult, but this syndrome goes much further. Discover what is Tourette’s syndrome, its symptoms, and characteristics in this guide.

Tourette’s Syndrome

What is Tourette Syndrome?

Definition

This condition was named by Charcot, in the name of Georges Albert Édouard Brutus Gilles de la Tourette, a Neurologist, and a French physician, who published a total of nine cases of patients with this syndrome in 1885.

Gilles de la Tourette’s syndrome is a type of tic disorder, in which at least two motor tics happen and at least one vocal tic for more than a year.
In addition to Tourette, there are other types of tic disorders:

• Transient tic disorder: it is common in children and is not usually treated because it lasts less than a year.
• Chronic tic disorder: Only one tic (vocal or motor) appears and has been there for more than one year.

Tics usually appear at 5-7 years old. The most common are head and neck motor tics. They usually increase in frequency and severity in pre-puberty (8-12 years). Most people with Tourette syndrome notice improvement in late adolescence, these may even disappear. However, a small portion of these people’s symptoms worsens during adulthood.

The prognosis is worse if it coexists with other psychiatric disorders, chronic physical illnesses, drug use, disrupted and a hostile family environment.

Tics can range from mild to severe, and in some cases can be debilitating and cause harm to oneself. They vary regularly in type, frequency, and severity. Sometimes the reasons are unknown but others may respond to factors such as stress, anxiety, fatigue, illness or over-excitement and enthusiasm.

It is estimated that about 1% of children between the ages of 5 and 17 suffer from some form of tic disorder. Although it happens in all cultures and ethnic groups, it is more common in males than females. 

Later neurologist Oliver Sacks realized that this disorder was quite common and wanted to discover more about  Tourette syndrome, so he decided to form the Tourette Syndrome Association in 1974. Studies of this disease increased, they began to analyze the patient’s body language and linguistic structure of the tics, among other symptoms. 

Symptoms of Tourette’s Syndrome

The tics

To understand what Tourette’s disease is, you first have to understand what is a tic.

Tics are sudden uncontrollable movements or vocalizations. They tend to be fast and can be expressed individually or in bursts (repeated tic several times in a row and then they stop). They are involuntary, variable and may disappear for a while. They have no purpose other than to calm the imperative need to do it. People with tics are able to predict that it will happen, they feel a sense of urgency previous to the tic.

They are not rhythmic, this is what distinguishes them from stereotypies. Stereotypies are movements or sounds, very typical of autism, rhythmic. Its purpose is to comfort and stimulate the person who performs them.

They are not rhythmic, this is what distinguishes them from stereotypies. Stereotypies are rhythmic movements or sounds, common in autism. Its purpose is to comfort and stimulate the person who performs them.

Symptoms of Tourette’s Syndrome: Motor Tics

• Simple: movements involving a single muscle group, such as blinking, neck twitching, shoulder lifting.
• Complexes: chains of movements. They can be complex facial gestures, touching your hair, fixing your clothes, self-assaulting, jumping.

Symptoms of Tourette’s Syndrome: Voice Tics

• Simple: they are sounds like coughing, clearing, guttural sounds, nasal inspirations.
• Complexes: they can be repeated words or phrases outside a context, sudden changes in the volume or rhythm of speech, insults (also called coprolalia), repetition of own sounds or words or repetition of words of others (echolalia).

In the following video, you see how these tics happen in Tourette’s Syndrome and how it can affect the person.

Causes of Tourette’s Syndrome

No specific causes of Gilles de la Tourette Syndrome have been established. However, there is a very important genetic factor as well as certain environmental factors influencing.

According to several studies genes play an important role:

• Genetic studies show that Tourette’s syndrome is inherited by a dominant gene with a 50% chance of transmitting it to children.
• Boys are three to four times more likely than girls to have it.
• Tourette’s syndrome can be triggered by an abnormal metabolism of the neurotransmitter dopamine.

Studies also suggest that it may be a result of the interaction between multiple genes and other factors in the environment. Some environmental risk factors that may contribute to Tourette’s Syndrome have been established, however, much research is still needed. Some of these factors are:

• Alcohol or tobacco abuse during pregnancy
• Birth Complications
• Low birth weight
• Infections

Tourette’s Syndrome Treatment

Medication can be very useful for controlling tics if they have become problematic. However, it can affect the child’s development if medicated for a very long time and can have many side effects.

In addition to drugs, psychotherapy is necessary. Psychologists can help manage the social and psychological difficulties that this disorder brings. Behavioral therapy is also very useful for reducing tics, by becoming aware of them and their sense of control.

Tips for people with Tourette’s Syndrome

In addition to obtaining psychiatric and psychological help, people with Tourette’s syndrome need:

• Get support from family, friends, healthcare team or groups that allow you to face the difficulties of Tourette’s syndrome.
• Be active: practice sports, paint or become a volunteer. These activities will take your symptoms out of your mind.
• Relax: Tics are often aggravated by acute stress and anxiety. Combat it by doing relaxing activities, such as reading, listening to music, meditating (Mindfulness meditation), doing yoga, walking or spending time with your pets. 
• Find out everything you can about your condition, so you know what to do to manage your symptoms.

Tourette Syndrome in Children

Children with Tourette have certain special needs. Several studies have found that:

• Most parents of children with Tourette’s syndrome report more often that their children have fragile health and need more care.
• Children with Tourette’s syndrome are more likely to also have ADHD, behavior problems, anxiety symptoms, depression or autism.
• Parents also feel more angry and upset with their children with Tourette’s than parents of children without this syndrome.

However, not everything is negative. There has also been an increase in awareness of the syndrome and how it affects families, which can help to understand these difficulties and improve the child’s ability to live with Tourette. Proper treatment can help alleviate parental difficulties and strengthen family functioning.

How can you help your child with Tourette?

• Report it to the school: If your child has Tourette’ syndrome report it to the school. Teachers need to know the characteristics of the syndrome in order to give them the help they need, such as a support teacher.
• Help develop social relationships: Relating socially can be difficult to a child with this disorder. Help her practice ways to handle teasing or bad comments from other children.
• Cultivate Their Self-Esteem: This syndrome makes you have a fragile or low self-esteem because it limits you intellectually and socially. Make sure you emphasize his qualities and help him, without criticism, to manage and alleviate his difficulties.
• Encourage them to pleasant activities: Activities such as sports, artistic activities and others can help reduce anxiety and tics may decrease.

Remember that in most cases, tics disappear in late adolescence. Only a few will continue with the syndrome until adulthood, although their symptoms may improve. It is therefore essential that they have appropriate treatment as soon as possible.

Tourette’s Syndrome: Sports can help with symptoms

How to help a person with Tourette’s syndrome?

1. Don’t try to change them but rather accept them as they are. You won’t be able to eliminate their tics and might damage their self-esteem if you push too hard.
2. Talk about their tics only if the person is comfortable doing it. Do not refer to them unless they bring it up.
3. Physical contact can calm you. Always at the appropriate times, with your consent, in those you perceive that you need and respect you.
4. Don’t point out new tics. They probably already know and it might be embarrassing for them.
5. When you speak to them ignore the tics. If the tics are exaggerated this can be difficult but try your best to ignore them and continue with the conversation. Remember to always say positive things such as your tics are not important and I love you and appreciate you the same way.

Tourette’s Syndrome

As we mentioned before, neurologist Oliver Sachs decided to study Tourette’s Syndrome even further. He discovered that those who suffer from Tourette’s syndrome have an excessive amount of transmitters which could alter the patient’s personality. Ray, one of Dr. Sacks’ patients, had suffered from this syndrome since he was four years old. He was an innovative person, with lots of musical talent-especially drums. 

Dr. Sacks prescribed Haldol to make Ray’s tics go away, but Ray wasn’t sure he wanted to take it. He spoke in the third person and referred to himself as Ray the ingenious ticqueur. He worried that if the tics were gone, there would be nothing left of him because he was his tics. The Haldol reduced Ray’s nervous energy and made it more difficult for him to be witty and give quick answers. The medicine also robbed him of his talent with the drums. He had lost agility and the ability to improvise.

Ray decided to continue taking medicine and now had a happy and stable marriage. He had kids and maintained his friendships. He’s less agile than before, he’s less competitive and direct, and he’s also lost his sudden movements that helped him with the drums. He decided to only take Haldol during the work week, and not take it on the weekend. So, during the week Ray was solemn and quiet and during the weekend he would let his hair down and be crazy and inspired.

After his experience, Ray believes that those who have Tourette’s syndrome are not free. When you suffer it’s like being drunk every day, and if you medicate yourself it’s like you’re always another person. It is a decision that people like Ray have to make, and it is a decision that each person must have to make on their own.

People who don’t know firsthand about Tourette’s syndrome have a natural balance, but those with this syndrome have to find an artificial balance and find out how to get the best out of it. Please feel free to leave a comment below!

Alejandra Salazar

Alejandra is a clinical and health psychologist. She is a child specialist with a diploma in evaluation and intervention in autism. She has worked in different schools with young children and private practice for over 6 years. She is interested in early childhood intervention, emotional intelligence, and attachment styles. As a brain and human behavior enthusiast, she is more than happy to answer your questions and share her experience.