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Tourette's syndrome (TS) is a neurological disorder characterized by sudden, repetitive, rapid, and unwanted movements or vocal sounds called tics. TS is one of a group of disorders of the developing nervous system called tic disorders. There is no cure for Tourette's, but treatments are available to help manage symptoms.
Tics come and go over time, varying in type, frequency, location, and severity. The first symptoms usually occur between the ages of 5 and 10 years old, generally in the head and neck area and may progress to include muscles of the arms and legs. Most people with Tourette's syndrome experience their worst tic symptoms in their early teens, but tics typically lessen and become more controlled by the late teens to early 20s. Motor tics generally occur before the development of vocal tics and simple tics often precede complex tics.
According to the National Institute of Neurological Disorders and Stroke (NINDS), about 200,000 people in the U.S. exhibit severe symptoms of Tourette's syndrome. As many as 1 in 100 Americans experience milder symptoms. TS affects males nearly four times more than females.
Tic's are kind of like having hiccups. Even though someone may not want to hiccup, their body does it anyways. Sometimes a person with Tourette's can stop themselves from doing a certain tic for a while, but it's hard. Eventually, the person has to do the tic, and withholding tics can lead to worse tic attacks.
There are two types of tics- motor tics and vocal tics:
Motor tics are movements of the body. Examples of motor tics include blinking, twitches, shrugging the shoulders, jerking an arm, or tapping.
Vocal tics are sounds that a person makes with their voice. Examples of vocal tics include humming, clearing the throat, or yelling out a word or phrase.
Tics can either be simple or complex:
Simple tics involve just a few parts of the body. Examples of simple tics include squinting the eyes, sniffing, making noises, or jerking the head.
Complex tics usually involve several different parts of the body and can have a pattern. An example of complex tic is clapping the hands together and then hitting themselves. Another example is having a vocal and motor tic that go together such as saying "dip" and dipping a finger into something.
Coprolalia is the medical term to describe probably the most socially stigmatizing symptom of Tourette's syndrome: the involuntary outburst of obscene words or socially inappropriate remarks. Examples include curse words and references to genitals, excrement, and sexual acts. Coprolalia is most often expressed as a single word but can also come as complex tics and phrases. Although coprolalia is the most widely known symptom of TS it occurs in about only 10% of people with TS. There is no way to predict who will develop coprolalia.
Echolalia is the repetition or echoing of words or sounds a person hears someone else say.
Echolalia is an important step for language development in children. Children often learn to speak by repeating what they hear. Echolalia is commonly seen in toddlers within their first 3 years but can become a problem if it continues after that. Echolalia in children older than 3 and adults can be a sign of autism or Tourette's syndrome.
Repeating words, phrases, or noises that others say is the main symptom of echolalia. It can also cause anxiety, frustration, or irritability when talking to someone.
There are two types of echolalia: immediate and delayed. Immediate echolalia is when someone repeats something right after it was said. Delayed echolalia involves repetition of words hours or days after hearing them. This is usually seen in cases of autism.
The main symptom of TS are tics. Symptoms usually begin when a child is 5-10 years old. The first symptoms are usually motor tics that occur in the head and neck area. Tics usually worsen during times of stress or excitement. They tend to improve when a person is calm or focused on an activity.
The types of tics and how often a person has tics changes a lot over time. In most cases tics will decrease in adulthood and sometimes disappear completely. However, this is not the case for everyone. Even though symptoms might appear, disappear, and reappear, Tourette's syndrome is considered chronic.
Although the media often portrays people with TS as involuntarily shouting out swear words (called coprolalia) or constantly repeating the words of other people (called echolalia), these symptoms are rare, and are not required for a diagnosis of TS.
Doctors and researchers do not know exactly what causes TS. Some research suggests that it is an inherited genetic condition.
There is no single test to diagnose TS. Health professionals look at the person's symptoms to diagnose TS and other tic disorders. Tic disorders differ from each other in terms of the type of tic present (motor, vocal, or both), and how long the symptoms have lasted. TS can be diagnosed if a person has had both motor and vocal tics lasting at least a year.
Although there is no cure for Tourette's, there are treatments available to help manage tics. Many people with TS have tics that do not get in the way of their daily life and do not need any treatment. However, medication and behavioral treatments are available if tics cause pain or injury, interfere with daily life, or cause stress.
Tourette's syndrome is considered a disability under the Americans with Disabilities Act (ADA). Individuals with TS should become aware of their rights in case of discrimination.
Much of the stigma that surrounds tic disorders and Tourette's syndrome comes from misunderstanding. These information cards held explain the effects of TS and are useful in stressful situations like traveling and misunderstandings in public.
Read "Living with tic Tourette's and tic disorders: a guide for patients and families" here.