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The French neurologist Georges Gilles de la Tourette described the strange behavior of the Marquise de Dampierre in 1885. The distinguished lady involuntarily jerked up and made roughly articulated sounds, but - apart from these phases - behaved normally and became 86 years old. Tourette described nine other cases with similar symptoms - and the disorder was named after him.
The Tourette syndrome is a nerve disorder with genetic causes. The main symptoms are tics, nervous twitches. It is a central nervous movement disorder. Up to 0.9% of all children are affected, and the disorder occurs much less frequently in adults. Since it is a biological disease, it should be equally common worldwide. Boys suffer from the disorder three times as often as girls.
Tourette syndrome symptoms
The main symptoms are the tics. These movements are involuntary, they start abruptly and sometimes turn out to be extreme. These motor disorders run individually or in series, but always in the same way.
These uncontrollable movements are accompanied by involuntary sounds, from words to croaking, coughing, screeching, grunting, grumbling, animal sounds or stereotypical exclamations, whining, clicking your tongue, clearing your throat, squeaking or giggling.
These tics usually show affected people as children, they increase and often increase during puberty. In some of the sufferers, the symptoms diminish after puberty, but most patients suffer from it throughout their lives.
Involuntary movements include: blinking, nasal torso, throwing your head to the side, repeatedly pulling your shoulders up, throwing your head back, trembling with one or both hands, or bending your torso to the side.
Affected people jump, they touch other people, they smell objects or people, some movements even lead to self-harm if the patients hit their heads on the wall, for example, or squeeze and twist their own skin.
More complex tics can be seen in copying others' actions, i.e. echopraxia, or imitating their facial expressions. To do this, they repeat the words of others like a parrot or utter obscenities and aggressive terms without triggers. They also produce sentences that have no connection to the topic of a conversation, and they repeat the words that they said themselves (Palilalie).
Here is a brief summary of the symptoms:
- Simple motor tics like winking, shrugging shoulders, pushing the head, making faces.
- Complex motor tics such as touching objects, people, twisting your body, twitching your limbs, obscene gestures (copropraxia), self-harming actions.
- Simple vocal tics such as clearing the throat, squeaking, grunting, sniffing or clicking the tongue.
- Complex vocal tics like words or sentences thrown out (often profanity or swear words).
This creates social problems. Copying the actions of others like a clown in a circus often interprets the mimics so that the person concerned makes fun of them. Shouting at bosses, friends, customers or strangers, calling them "assholes" or worse in series, or even segregating words like "kill" has massive consequences.
Loss of job, botched business deals, insult reports or a fist on the face are possible consequences.
In some people the symptoms appear permanently, in others at intervals, but then in series and in others in stressful situations. The last ones don't have it any easier, however: if you constantly shrug your head or meow like a cat, your social environment is labeled “crazy”, but it becomes clear that the tics are not meant personally.
On the other hand, if you only tick out in stressful situations, but otherwise behave inconspicuously, others assume that you do it consciously. So whoever turns out to be a “normal” employee, but especially at the crisis meeting with the boss chattering like a duck or “fucking” produces; Anyone who shows himself polite to customers, but is under time pressure and shouts at the buyer as a "pitiful wanker" - will not stay in a job for long.
How can the syndrome be recognized?
Some affected children have no explanation for their ticks; they don't know each other differently. Usually the parents worry about the strange behavior. Unfortunately, they often suspect the wrong causes: they ask themselves what they did wrong in their upbringing, they interpret the tics as irritant behavior and are annoyed, or they suggest social triggers or psychological problems.
In fact, some socially triggered diseases of the psyche show similar symptoms. Hospitalism, for example, the isolation of children in homes or concentration camps, causes motor disorders in series, which are also stereotyped and which popularly discriminates as "bobble head". In animals in cramped enclosures, we speak of weaving when they stand in one place and constantly move their heads back and forth.
Because of the motor tics, worried parents sometimes conclude that their child is underutilized or wants to draw attention to itself. That would also make sense for psychologically-related problems - but that's not what Tourette syndrome is about.
The people themselves feel “pre-feelings”. For example, there is a tingling sensation in the stomach, you feel tension in the neck, and immediately afterwards you start choking. However, those affected usually only notice the twitching when they are already ticking away.
The social environment
The social environment, i.e. parents, siblings, friends, classmates and colleagues are essential for the course of the disorder, especially the characteristics of those affected in early childhood.
Such children are not learning disabled compared to "normal", and yet they often have problems at school. This is less due to the tics, but to the hyperativity and the weakness to concentrate, which are often associated with Tourette syndrome.
The tics have an impact on practical work at school, for example when the hand trembles when writing, but also bring social restrictions. For example, classmates sometimes make fun of the "quirks"; who grimaces, repeats obscene words, or jumps around in class is particularly suitable as a mockery. This is especially true for puberty, when similar behavior by those not affected serves as a provocation.
Teachers are required to integrate those affected into the school system and to find an individual solution. If they show motor symptoms that hinder them from writing, it helps to use computers instead of fountain pens; with vocal tickers you can leave the classroom.
If the social reactions to the symptoms lead to conspicuous behavior on the part of those affected, be it grief, depression or internal withdrawal, then child psychiatry helps.
Parents can use professional support to interpret behavior. Children and teenagers with Tourette syndrome are children and teenagers who have to deal with the problems of adolescence caused by their disorder.
Parents are straddling the gap between understanding, consistency and excessive care. Tourette patients can generally develop a “normal” everyday life, and protecting them excessively is therefore wrong - it is especially important for them to learn independence. This is the prerequisite for classifying and controlling the symptoms.
However, if the parents take all decisions from the "sick child", monitor their daily routine for well-meaning reasons and thus deprive them of their own experiences in the social environment, the child does not learn to differentiate between its "normal" behavior and its ticking.
A child with Tourette syndrome therefore urgently needs experience in peer groups in order to first gain recognition here and secondly to recognize the limits set by the group. Since the disorder is not a psychosocial illness, those affected learn social rules as well as "healthy" children.
Conversely, peers learn to understand the behavior of a Tourette patient if the patient is not constantly being looked after in the seemingly safe home, but is getting to know the world outside with other children.
Children who are mentally healthy themselves integrate children with unusual behavior who grow up with them, often more impartially than adults, who project their ideas of values and norms onto the "different". The common socialization also trains the frustration tolerance of those affected when other children make fun of them.
The parents are therefore faced with a challenge: they must not allow the “sick” child to go through attacks that have nothing to do with the disorder, but at the same time do not condemn those affected for their ticks.
In extreme cases, personalities emerge who blame their disturbance for every conspicuous behavior, every failure at school and every violation of rules, even if they have nothing to do with it.
If the parents give those affected the freedom to develop independently, they should set limits just like a "normal" child.
In the best case, the child internalizes early on that it shows peculiarities, but at the same time is socially integrated and at the same time strives for social integration.
There are no complex procedures for this disorder, such as a DNA or blood analysis. The diagnosis, on the other hand, is considered certain when a patient shows the main symptoms. Unfortunately, the diagnosis is often made very late, because lighter forms of behavior are overlooked.
However, if there is suspicion, the doctor first examines the patient's history, asking what kind of tics they have been showing, when they started, how often and intensely they occur, whether they increased in strength, and how much the patient suppressed them can.
The degree of self-control is crucial. Lighter cases of torets are reminiscent of "quirks". Such behavioral problems can become pathological, but have nothing to do with the disorder. In particular, a “quirk” is not involuntary: for example, if someone gets used to scratching their neck out of embarrassment and retains this behavior in public, they may run into problems. While it is a fad that has a psychological cause, it can be deliberately controlled as a negative habit.
A Tourette patient can, with the best education and strong will, postpone, reduce and integrate his tics into everyday life, but not cancel them out.
A neuropsychiatric disorder
Tourette is a neuropsychiatric illness. This does not mean that those affected are mentally ill, such as psychotics who cannot distinguish between the unconscious and the outside world. Instead of the paranoia of schizophrenics, the tics can be compared to epileptics who have no control over their body during a seizure, but otherwise perceive reality as well as "healthy people".
Tourette patients are aware of their tics, and most of them suppress them on their own. The twitches are involuntary, but those affected control them to a limited extent. They often feel their "discharge" beforehand and choose a quiet place for it, for example by walking into the park alone - comparable to a hiccup.
Those not affected know the patient's suffering from the reaction to such a hiccup. We sit in the seminar and have to “hick”; we suppress the urge to swallow, but it becomes stronger. The pressure on our diaphragm increases, so we go to the toilet until the hiccups are over. Or we lie in bed and feel a twitch in the body; then it's over and we relax. A Tourette sufferer experiences similarly when the tickers announce themselves.
Even pupils with the disorder train themselves to control the symptoms. They often stay calm at school and only start ticking when they are safe in their parents' house. Many people affected are no more "undisciplined" than healthy people. The opposite is the case: new studies show that those affected control their movements and language to a greater extent than those who do not.
On the one hand, the tics increase when emotions increase, with stress, inner restlessness, with anger, grief, but also with euphoria and exuberance and subside when those affected relax or concentrate on a task. However, if those affected suppress the symptoms, they break out exactly when they relax - for example, a patient comes home, lies down on the sofa and now begins to turn his head involuntarily.
Tourette syndrome causes
Nerve cells in the brain essentially control our movements; if these connections are disturbed, the movements involuntarily penetrate to the outside. Therefore, those affected cannot stop unwanted movement and speech patterns, even if they want to.
The patient's dopamine balance is disrupted, and dopamine is responsible for transporting information, such as movement patterns, to which it is then implemented.
Tourette is inheritable, and this hereditary disposition interacts with the social environment. Families of affected people very often have members with typical symptoms of the disorder.
So the syndrome is not a "mental illness" - but sufferers often suffer from psychological problems, which in turn take the form of mental disorders.
Comorbidities include attention deficit disorder and obsessive-compulsive disorder. However, it remains unclear whether these are the diseases in the clinical sense or behavior that is similar to these diseases.
Obsessive-compulsive disorders can be due to the neural structure of the tics - the tics are compulsive because they follow the same pattern. On the other hand, many Tourette sufferers develop compulsive rituals to get their “tickers” under control.
For example, those affected constantly check whether the coffee machine is on, or they demand a fixed ritual from their parents to go to bed. Parents have to repeat a sentence until it sounds "right". Affected people develop a perfectionism that is obscure to outsiders - everything has to be in the "right" place, and "wrong" words disturb the "symmetry".
Other abnormalities are similar to Attention Deficit Disorder, and they show up even at an age before the tickers begin. These sufferers show restlessness in their movements; they have difficulty concentrating; they start a lot and hardly accomplish anything; they cannot listen and are easily distracted; they jump from one action to another; they talk continuously.
Such sufferers often slip into their “tickers” when they have to listen because someone else is speaking - they tick out when they cannot physically let off steam because they have to concentrate mentally.
Then situations are the trigger for the tics that appear to laypeople as a lack of self-discipline or a lack of upbringing: to wait in school until it is their turn to make their contribution, to listen to the conversation, first to do the homework and then around to run…
The problems that arise from responding to this behavior sometimes lead to depression. However, this is a social consequence of Tourette's syndrome and not the syndrome itself: those affected are afraid to go to school; they feel "different", they are sad and lose their lust for life; they withdraw.
They know and fear triggers for their involuntary behavior and try to avoid them through a rigidly structured everyday life. This goes so far that those affected exclude everything unusual, for example, distance themselves from their sexual partners, avoid necessary arguments or stay in the same job for decades.
The compulsion sometimes goes so far that a person concerned concentrates on intellectual work in situations that trigger strong emotions, for example solving math problems when his friends invite him to the football stadium.
The control of the symptoms also goes hand in hand with social problems. These are exacerbated when laypeople interpret the typical behavior as "bad behavior". Parents then talk to their children about feelings of guilt because they “do not adapt”, teachers treat them like “troublemakers”, and classmates exclude them as “psychos”.
In particular, the (abusive) symptoms referred to as coprolalia and copropraxis cause conflicts to escalate: elementary school students are not neurologists, and a victim who suddenly throws abusive criticism at them becomes unpopular.
The good news: those affected are socially just as capable of learning as "normal" children. Teachers easily confuse the unusual behavior with dissocial disorders - but that has nothing to do with it.
Sick people do not behave anti-social - at least not because of their nerve disorder. Your “obscene” symptoms are just as involuntary as the twitching of your eyelids.
In youth cultures such as gangsta rap, competition for the most obscene word creations is part of the repertoire. The insults emitted by Tourette syndrome are detached from deliberate defamation.
Those who do not know, therefore, annoy these tics - or they unsettle him; if, for example, he stands alone next to a stranger who looks in his direction, repeating words like "bastard" over and over again.
Tourette patients are harmless. They behave aggressively but do not attack other people. They break out in anger, but harm themselves, for example by punching their own faces.
The aggression of the sick arises from their impulses, which force expression. The patient cannot control his emotions, so he feels helpless and tries to force his body to "obey". For example, he feels a tug on the neck and "pushes back this outbreak" by striking his head with his fist.
The symptoms, i.e. the ticking out, cannot be cured and the biological cause cannot be contained. Psychiatric drugs can reduce symptoms, but most patients are not so limited as to warrant the use of such drugs.
If the disease is severe, however, and leads to obsessive-compulsive symptoms and commitments, various preparations help: tiapride, sulpiride, risperidone, pimozide or haloperidol.
There are also behavioral therapies, which have proven to be very effective due to the insight of most of those affected. Regular advice from curative educators, special needs educators and physiotherapists is recommended.
The syndrome particularly affects the social area. Since many patients already control the ticker on their own, behavioral training can significantly reduce the social impact.
Relaxation techniques alleviate the stress triggers, which in turn trigger the tics. Music therapy offers a positive perspective, right up to patients who become professional musicians. The nervous impulses can often be derived from playing instruments - especially when the whole body is in demand, for example with drums or an organ.
Training helps against the physical consequences of the symptoms. So Hillie, a victim, went to a weight training studio. His motor ticks were expressed by constantly jerking his head to the side. That's why he'd gotten into a crooked walk, his shoulders and neck muscles contorted. Several years of strength sports studio with an experienced trainer who is also familiar with behavioral problems not only brought the physical posture back into balance, but also relieved the main symptoms.
Hillie still twitched after a long workout, but hardly any of his sports fans noticed it. At most, they were amazed at the enormous amount of work Hillie was able to do while lifting the dumbbells. His trainer also spoke hard but heartfelt plain text when talking about everyday situations in which he brought up his tics as an excuse. Finally, the person concerned found a permanent job at the municipal horticultural office. First, he liked the job, and second, it was ideal for getting rid of his excess energy - the hedges he pruned didn't bother his tics in the least.
From sick to artist?
Tourette's syndrome and the reactions to it often lead to restrictions for those affected in everyday life.
The good news is that Tourette, like certain forms of bipolar disorder or Asperger's syndrome, can even be used positively.
Tourette is an impulse control disorder; Affected people can control the involuntary symptoms to a certain extent. The neurologist Oliver Sacks sees a potential in turning the tics into creativity if the patients convert the energy flowing into them into music, for example.
This is confirmed by musicians who not only suffer from Tourette syndrome - like the composer Tobias Ticker. He says that when he works on his music he has no symptoms. However, the “Austicker” would have become an integral part of his creative imagination.
The pianist Nick von Bloss even sees his Tourette syndrome as a gift: he channels the energy that this peculiarity offers into his music making. Sacks even sees certain types of music as “suitable for Tourette.” Jazz and rock offer heavy beats as well as the freedom to improvise and thus correspond to the nervous tension of those affected.
Affected people often show a particularly good physical responsiveness - combined with an urge to move. Martial arts, playing the drums, table tennis, basketball or even mountain biking are therefore particularly suitable for them.
The syndrome lowers motor inhibitions in the central nervous system, and those affected trigger movements more quickly than those who do not.
The general rule is: the syndrome does not mean disability. Affected people work as doctors and pilots, as engineers and teachers. Overall, they are no less efficient than others.
Shared pain is half of the pain; should those affected join self-help groups? Some patients refuse such an exchange with other sufferers: the syndrome includes compulsive copying, and some sufferers involuntarily “learned” the tics of other Tourette sufferers in addition to their own.
The Tourette personality
Tourette syndrome in itself is a biological peculiarity - not a psychological one. But, according to Sacks, personality and syndrome combine in the socialization of those affected.
Children control their symptoms, but at the same time have problems developing an identity. They split off the involuntary behavior as "that's not me", but suffer from the fact that there is something in them that they cannot (understand).
At the beginning there is the bitter experience of "being out of control" in uncontrolled phases - this however happens in ages where the questions "Who am I?" And "What differentiates me from others?" Has top priority.
Especially in childhood, social integration in friendships and in the parental home is essential for the development of a stable personality.
Insight into the brain
It is easy to confuse the vocal tics with anti-social insults, also because the “dirty words” seem to seem purposefully targeted. A child affected hissed in general stress situations, for example "fuck", but repeated the swear word "du sow" towards people - especially the mother.
It is difficult not to take such (apparently) targeted insults personally.
It is precisely these tickers with content and addressees that show how our brain works. A drunk also loses impulse control: he defames the bartender and flies out of the pub, he gives oaths of love to potential sexual partners, or he throws money around that he does not have. The next day, when he wakes up from the hangover, he is terribly sorry for everything.
Impulse control is also suspended for other drugs such as Chrystal Meth, and people use these substances extra to lose inhibitions.
Acts in affect judge judges as such with full consciousness because someone overwhelmed with emotions has no control over their actions. Therefore homicide is a less serious crime than murder.
We all know affect: when we are angry, we label our partner with words that we would be sorry for in a more relaxed state - even if we supposedly use them consciously in the situation. However, we do not have this “will” under control because our feelings are pent up.
The control that Tourette sufferers have over the timing and course of their tics shows that they are controllable to a certain degree - and then? We know the situation in a milder form: we argue and notice that if one word changes now, we “explode”. But if we go into the fresh air, hold our head under cold water or take a deep breath - then "let off steam".
If we accumulate frustration, it helps to go into the forest and roar an outburst of hate in nature, or to write every dirty word that we can think of in a diary. Then we feel cleansed.
The verbal tickers of Tourette patients work in a similar way, but control over the action itself is not possible. It does not matter to people whether we control movements or articulate ourselves with language - our brain stores patterns and activates them. In the Tourette patient, the mediation of these associations via consciousness to the outside world is disturbed - but the associations themselves also form “normal”.
The brain in which the impulse control works also stores sounds and “bad words” as those affected emit them. Stress situations also trigger his tics in Tourette patients. The unconscious, i.e. the ensemble of remembered patterns, vocabulary and emotional images that we constantly refer to, automatically creates associations and arranges them.
In dreams we experience dramatic stories that we do not control. In our unconscious we imagine actions that we never allowed to be implemented.
So when Tourette patients seem to target people with insult, it actually happens involuntarily. Our unconscious forms a pattern in which an abusive word refers to subjects, but not to objects or situations. Even an impulse released in words "du sow" emits against a person.
However, the brain only forms meaningful narratives when the unconscious and the filter of the conscious interact. However, this teamplay is suspended in the tics of Tourette patients. Basic patterns run without consciousness adapting them to the specific situation.
Animal sounds from those affected suggest that certain impulses leak directly from the older parts of the brain, where our evolutionary history is stored.
Put simply, a person under stress feels like the Tourette patient the urge to alleviate this stress - for example by roaring or walking. This stress is a negative experience, matched by words that the subconscious stores as negative. This includes swear words like "you sow".
Children who do not learn social behavior have no inhibitions of throwing “dirty words” around them, people with an awareness of social codes have also saved these words, but are reluctant to use them - it is a social learning experience.
The inhibitions of Tourette sufferers fall for biological reasons, and this reveals how our unconscious “ticks”. In this respect, Tourette syndrome is not just a neurological disorder, but as such reveals a lot about how our "normal" brain works. (Somayeh Ranjbar, Dr. Utz Anhalt)
Author and source information
This text corresponds to the specifications of the medical literature, medical guidelines and current studies and has been checked by medical doctors.
Dr. phil. Utz Anhalt, Barbara Schindewolf-Lensch
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- Berufsverbände und Fachgesellschaften für Psychiatrie, Kinder- und Jugendpsychiatrie, Psychotherapie, Psychosomatik, Nervenheilkunde und Neurologie aus Deutschland und der Schweiz: Was sind Tic-Störungen / ist das Tourette-Syndrom? (Abruf: 20.08.2019), neurologen-und-psychiater-im-netz.org
ICD-Codes für diese Krankheit:F95ICD-Codes sind international gültige Verschlüsselungen für medizinische Diagnosen. You can find e.g. in doctor's letters or on disability certificates.