WHAT IS TOURETTE?
Tourette is a lifelong neurobiological disorder, which is often misunderstood and misdiagnosed. Tourette is characterized by involuntary, repetitive movements and vocalization called tics, which become evident in early childhood or adolescence, between the ages of 2 and 15. Currently there is no cure for Tourette.
Symptoms of Tourette vary from person to person and range from mild to severe. Tourette occurs in all socioeconomic and all ethnic groups. Males are affected 3 to 4 times more frequently than females.
Most individuals with Tourette lead productive lives and there are no barriers to achievement in their personal and professional lives in an informed and supportive environment. People with Tourette are found in all professions. A goal of the Tourette Association is to educate those diagnosed with Tourette and the public in order to increase understanding and tolerance.
Tourette Syndrome is one type of Tic Disorder. Tics are the defining feature of a group of childhood-onset, neurodevelopmental conditions known collectively as Tic Disorders and individually as Tourette Syndrome, Chronic Tic Disorder (Motor or Vocal Type), and Provisional Tic Disorder. The three Tic Disorders are distinguished by the types of tics present (motor, vocal/ phonic, or both) and by the length of time that the tics have been present.
Individuals with Tourette Syndrome (TS) have had at least two motor tics and at least one vocal/ phonic tic in some combination over the course of more than a year. By contrast, individuals with Chronic Tic Disorder have either motor tics or vocal tics that have been present for more than a year, and individuals with Provisional Tic Disorder have tics that have been present for less than a year.
Symptoms and Behavior
Motor tics are movements. Simple motor tics include but are not limited to: eye blinking, facial grimacing, jaw movements, head bobbing/jerking, shoulder shrugging, neck stretching, and arm jerking. Complex motor tics involve multiple muscle groups or combinations of movements and tend to be slower and more purposeful in appearance,(e.g., hopping, twirling, jumping).
Vocal (phonic) tics produce a sound. Simple vocal tics include but are not limited to sniffing, throat clearing, grunting, hooting, and shouting. Complex vocal tics are words or phrases that may or may not be recognizable but that consistently occur out of context. In 10-15% of cases, the words may be inappropriate (i.e., swear words, ethnic slurs, or other socially unacceptable words or phrases). This type of vocal tic, called coprolalia, is often portrayed or mocked in the media as a common symptom of TS.
Appearance and Severity
Tics typically emerge between the ages of 5-7 years, most often with a motor tic of the head and neck region. They tend to increase in frequency and severity between the ages of 8-12 years. Most people with TS show noticeable improvement in late adolescence, with some becoming 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. 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.
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, we estimate that approximately 300,000 children in the United States is affected by Tourette. When out Tic Disorders are included with Tourette, the estimate rises to 1 out of every 100 children or 1% of children between the ages of 5 and 17.
The causes of Tourette and other Tic Disorders remain unknown. The conditions are hereditary and so genetics clearly play a role in many, if not most or all, occurrences of the conditions. Environmental, developmental or other factors may also contribute to these disorders but, at present, no specific agent or event has been identified. 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.
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.
Behavior problems — Aggression, rage, oppositional defiance or socially inappropriate acts (disinhibition).
Anxiety — Excessive worries or fearfulness, including excessive shyness and separation anxiety.
Mood problems — 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 social functioning — Trouble developing social skills; maintaining social relationships with peers, family members, and other individuals; and acting in an age-appropriate manner.
Sleeping problems — Difficulty falling or staying asleep, bedwetting, walking or talking while asleep.