What is Tourette?

Tourette, also known as Tourette Syndrome or Tourette Disorder is a lifelong neurodevelopmental condition characterized by tics.

Tics are sudden, involuntary, repetitive movements and/or sounds which are the defining feature of a group of childhood-onset neurodevelopmental conditions known collectively as Tic Disorders including: Tourette Syndrome, Chronic Tic Disorder (Motor or Vocal/Phonic Type), and Provisional Tic Disorder.   A particular tic disorder diagnosis is established by the types of tics present (motor, vocal/phonic, or both) and by the length of time that the tics have persisted.

Individuals with Tourette Syndrome (TS) have had multiple motor tics and at least one vocal/phonic tic at some point over the course of one year or more.   By contrast, individuals with Chronic Tic Disorder have either motor tics or vocal/phonic tics that have been present for at least one year or more, and individuals with Provisional Tic Disorder have tics that have been present for less than a year.

Symptoms and Presentations

Motor Tics

Motor tics are repetitive, irregular movements that may be "simple" or "complex" in nature.   Examples of simple motor tics include: eye blinking, nose twitching, facial grimacing, jaw movements, head shaking, shoulder shrugging, and abdominal tensing. Complex motor tics involve multiple muscle groups or combinations of movements and may appear more purposeful (e.g., hopping, twirling, jumping).

 

Vocal/Phonic Tics

Vocal/phonic tics produce a repetitive sound that may be "simple" or "complex" in nature.    Some examples of simple vocal tics include:   sniffing, throat clearing, coughing, grunting, and repetition of syllables such as "ah" or "ee". Complex vocal/phonic tics may include repetition of words or phrases that sometimes appear deliberate or instead may appear entirely illogical, and occur out of context.   Involuntary repetitive utterances of vulgarities (i.e., swear words, ethnic slurs, or other socially unacceptable words or phrases) are a type of complex vocal tic called "coprolalia" that occurs in 10-15% of people with TS.    When present, coprolalia may be a dramatic and disturbing symptom but it is not a necessary symptom for the diagnosis of TS.

Course and Features

Tics typically emerge between the ages of 5-7 years, most often with a motor tic of the head and neck region. Tics tend to increase in frequency and severity between the ages of 8-12 years. Most people with TS experience noticeable improvement of tics in late adolescence, with some becoming virtually tic-free. A minority of people with TS continue to have persistent, severe tics in adulthood.

Tics can range from mild to severe and, in some cases, can be self-injurious and debilitating.  Due to their repetitive nature, tics may be associated with headaches, muscle tension, and pain.  Tics typically change in type, frequency, and severity over time—sometimes for reasons unknown and sometimes in response to specific internal and external factors, including stress, anxiety, excitement, fatigue, and illness.

Prevalence

Although Tourette and Tic Disorders were once thought to be rare, it has become increasingly apparent that they are common conditions. Study results vary, but the current estimates are that 1 out of every 160 children (0.6%) between the ages of 5-17 in the United States has TS. Using 2010 US Census data, it is  estimated that approximately 300,000 children in the United States are affected by TS. When all other Tic Disorders are included, the prevalence estimate rises to 1 out of every 100 children or 1% of children between the ages of 5 and 17 years.

Causes

The causes of TS and other Tic Disorders remain unknown. In the majority of cases, the conditions appear to be hereditary and so genetics clearly play an important role in many occurrences of the conditions. Environmental, developmental or other factors may also contribute to these disorders. Therefore, TS and Tic Disorders are likely to be caused by complex interactions between genetic and other factors which may vary in different individuals. Studies are underway to find the genes and other factors underlying the development of these disorders.

Co-occurring Conditions

TS commonly co-occurs with a number of other neurodevelopmental and neuropsychiatric conditions, some of which may present before and cause more impairment than the tics themselves. The most common co-occurring conditions include the following:

  • Attention Deficit Hyperactivity Disorder (ADHD) — Problems with concentration, hyperactivity, and impulse control.

  • Obsessive-Compulsive Disorder [or Behaviors] (OCD/OCB) — Repetitive, unwanted or intrusive thoughts and/or repetitive behaviors. There are many types of obsessive thoughts or urges, including excessive concerns about doing something “just right,” as well as intrusive religious, sexual, or aggressive thoughts. These thoughts lead to compulsions, which are unwanted behaviors that the individual feels he/she must perform over and over or in a certain way.

  • Learning difficulties — Difficulties related to reading, writing (dysgraphia), mathematics, Executive Function Challenges, and/or processing information that are not related to general intelligence.

  • Disruptive behaviors — Aggression, rage, oppositional defiance or socially inappropriate acts (disinhibition).

  • Anxiety — Excessive worries or fearfulness, including excessive shyness and separation anxiety.

  • Mood disturbances — Periods of depression or elevated mood that result in a change in behavior or functioning, which may be significantly different from the child’s usual self.

  • Social skills deficits and impaired social functioning — Trouble developing social skills; maintaining social relationships with peers, family members, and other individuals; and acting in an age-appropriate manner.

  • Sleeping disturbances — Difficulty falling or staying asleep, bedwetting, walking or talking while asleep.

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