Tourette Syndrome, also known as Tourette’s or TS, is a type of neurodivergence that is often misunderstood. People with Tourette’s are often met with staring, inappropriate comments, and mocking.
Tourette Syndrome impacts the nervous system, leading people with Tourette’s to experience tics. Tics are involuntary, repetitive movements, noises, or twitches. Examples of tics include blinking, throat clearing, grimacing, repeating a sound or phrase, jerking a part of the body, etc. Tics tend to initially present in childhood, usually between the ages of five and ten, though not always. These initial tics are often motor tics in the head and neck region.
Before experiencing a tic, a person with Tourette’s may experience uncomfortable bodily sensations such as tension, tingling, or itching. Sometimes people can prevent or stop themselves from doing a tic, but it can be extremely difficult, and it’s likely they will eventually need to do the tic. Expressing the tic can result in relief.
Tics can either be motor or vocal and are referred to as either simple or complex.
Motor tics involve bodily movements, such as jerking a leg, clicking the fingers, or touching other people or objects. Vocal tics are, as the name implies, vocal sounds made by a person. Examples of vocal tics include humming, squeaking, coughing, whistling, grunting, yelling, etc.
Simple tics relate to just one or a few parts of the body, such as nose twitching, shrugging, hand or arm movements, head or neck jerking, squinting, eye darting, mouth movements, etc.
Conversely, complex tics tend to involve several parts of the body and can take the form of patterns. An example of a complex tic would be grimacing paired with bobbing the head and jerking an arm. Other examples of complex tics include things such as touching and smelling objects and stepping in a particular pattern.
Tics can vary widely in type, frequency, and impact on daily life. They can worsen if someone is stressed, anxious, ill, tired, or excited and can sometimes be self-injurious in nature. They can tend to improve when a person is calm or focused on an activity.
The types and frequency of tics can change over time. They tend to pose greater difficulties in the early teenage years and can sometimes improve as a person transitions through adolescence and into adulthood. That said, many people with Tourette’s experience tics into adulthood, sometimes having tics more often as adults. Sometimes tics can disappear entirely, or can appear, disappear, and then reappear.
Though the media most often tends to depict people with Tourette’s as engaging in involuntary swearing or consistently repeating the words of others, these tics are rarer than portrayed and are not required for a diagnosis of Tourette Syndrome.
There’s no single test to diagnose Tourette Syndrome. Professionals need to discuss a person’s individual tics to determine whether their experience matches Tourette’s or another tic disorder (such as Persistent Motor or Vocal Tic Disorder or Provisional Tic Disorder), as tic disorders vary in terms of the tics present and how long a person has experienced them.
Tourette Syndrome can be diagnosed if someone has had a combination of vocal and motor tics that have lasted for at least a year, even if they’ve increased or decreased. This needs to include at least one vocal tic and two motor tics, though not necessarily simultaneously. Tics also need to have initially started prior to age 18 and are determined to not be caused by substance use or other diagnoses.
Like many neurodivergencies, Tourette’s often co-occurs with other forms of neurodivergence, such as OCD, ADHD, autism, anxiety, etc. Many people with Tourette’s have tics that don’t get in the way of their daily life, but for those who do, certain types of therapy, medications, and other coping mechanisms may help people with Tourette’s manage their tics.
People with Tourette Syndrome cannot control their tics and are not being difficult or disruptive on purpose. Educating others about Tourette’s can help to increase understanding, leading to greater support, reduced teasing, and less stress overall for those with Tourette’s.