What is Tourette?

 

Tourette Syndrome (TS) is a neurodevelopmental condition that affects children, adolescents, and adults. It is characterized by motor and vocal tics, which are sudden, repetitive movements or sounds that occur involuntarily. Tics can range from mild to more noticeable or disruptive, and their impact varies widely from person to person.

Tourette Syndrome is named after Dr. Georges Gilles de la Tourette, a French neurologist who first described the condition in the late 1800s. Our understanding of TS has evolved significantly since then, and today it is recognized as part of a broader group of conditions known as Tic Disorders.

Tourette Syndrome is one type of Tic Disorder. Tic Disorders are childhood-onset neurological conditions in which tics are the primary symptom. They include Tourette Syndrome (TS), Persistent (Chronic) Motor or Vocal Tic Disorder, and Provisional Tic Disorder. These conditions are distinguished by the type of tics present (motor, vocal, or both) and the length of time symptoms have been present.

Diagnosis

There is no single medical test to diagnose Tourette Syndrome or other Tic Disorders. Diagnosis is based on clinical observation of symptoms and a review of medical and developmental history. In some cases, healthcare providers may order tests to rule out other conditions, but these tests do not diagnose TS. Below are the criteria that a doctor or other health care professional will use to diagnose TS or other Tic Disorders.

Tourette Syndrome (TS): 1) At least 2 motor tics and at least 1 vocal tic have been present, not necessarily at the same time. 2) Tics may wax and wane in frequency but have occurred for more than 1 year. 3) Tics started to appear before the age of 18. 4) Tics are not caused by the use of a substance or other medical condition.

Persistent (Chronic) Motor or Vocal Tic Disorder: Either motor tics OR vocal tics have been present for more than 1 year; cannot be both motor and vocal tics.

Provisional Tic Disorder: Motor and/or vocal tics have been present for less than 1 year, and have not met the criteria for TS, persistent (chronic) motor, or vocal tic disorder.

Symptoms and Behavior

Motor Tics

Motor tics are movements and may be simple or complex.

Simple motor tics can include eye blinking, facial movements, jaw movements, head or neck movements, shoulder shrugging, and arm or hand movements.

Complex motor tics involve multiple muscle groups or sequences of movements and may appear more purposeful, such as jumping, twirling, touching objects or people, or repeating certain actions.

Vocal/Phonic Tics

Vocal tics involve sounds or words.

Simple vocal tics can include sniffing, throat clearing, coughing, grunting, humming, or other sounds.

Complex vocal tics may include words or phrases that are repeated and occur out of context.

Some individuals experience vocal tics that involve socially inappropriate or offensive words or phrases, a symptom known as coprolalia. This experience is uncommon, but it is a real and valid part of the Tourette Syndrome spectrum. Media portrayals often focus disproportionately on this symptom, which can contribute to misunderstanding and stigma. Tourette Syndrome presents differently for each individual, and no single symptom defines the condition or the person.

Onset of tics and duration

Tics typically emerge between the ages of 5 and 7 years, usually with a motor tic in the head or neck region. They tend to increase in frequency and severity between the ages of 8 and 12 years and can range from mild to severe. Most people with TS see improvements by late adolescence, with some becoming tic-free. A minority of people with TS continue to have persistent, severe tics into adulthood.

Tics can range from mild to severe and, in some cases, can be self-injurious and debilitating. Tics regularly change in type, frequency, and severity—sometimes for reasons unknown and sometimes in response to specific internal and external factors, including stress, anxiety, excitement, fatigue, and illness.

Prevalence

Tics most often begin in early childhood, commonly between the ages of 5 and 7, and frequently start with motor tics involving the face, head, or neck. Symptoms may increase in frequency or intensity during later childhood and early adolescence.

For many individuals, tics improve during the late teen years or early adulthood. Some people experience significant reduction in symptoms, while others may continue to have tics into adulthood. Tourette Syndrome follows a highly individual course.

Tics can change over time in type, frequency, and severity. They may be influenced by internal and external factors such as stress, anxiety, excitement, fatigue, illness, or changes in routine.

Causes

The causes of TS and other Tic Disorders remain unknown. These conditions tend to occur in families, and numerous studies have confirmed that genetics are involved. Environmental, developmental, or other factors may also contribute to these disorders but, at present, no specific agent or event has been identified. Researchers are continuing to search for the genes and other factors underlying the development of Tic Disorders.

Co-occurring conditions

People with TS often have other mental, behavioral, or developmental conditions that may be present prior to the onset of tics. While tics are the primary symptoms, these co-occurring conditions may cause more problems and can be more bothersome than the tics themselves.

Among people diagnosed with TS, it is estimated that 86% have been diagnosed with at least one of these additional conditions.  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 intrusive thoughts and/or repetitive behaviors. These thoughts lead to compulsions, which are unwanted behaviors that the individual feels they must perform repeatedly or in a certain way.

  • Behavioral or Conduct Issues: Aggression, rage, oppositional defiance or socially inappropriate behaviors.

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

  • Learning Disability: Reading, writing, mathematics, and/or information processing difficulties that are not related to intelligence.

  • Social Skills Deficits and Social Functioning: Trouble developing social skills; maintaining social relationships with peers, family members, and other individuals; and acting in an age-appropriate manner.

  • Sensory Processing Issues: Strong sensory preference and sensitivities related to sense of touch, sound, taste, smells, and movement that interfere throughout the day.

  • Sleep Disorders: Trouble falling or staying asleep.

  • Functional Neurological Disorder (FND): The occurrence of functional tic-like behaviors that cannot be attributed to a medical condition, but that are genuinely experienced and may cause distress.

For more information, visit our Frequently Asked Questions page!