What is Tourette Syndrome?
Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The early symptoms of TS are typically noticed first in childhood, with the average onset between the ages of 3 and 9 years. TS occurs in people from all ethnic groups; males are affected about three to four times more often than females. It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics. Although TS can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst tic symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood.
Tics are classified as either simple or complex. Simple motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Some of the more common simple tics include eye blinking and other eye movements, facial grimacing, shoulder shrugging, and head or shoulder jerking. Simple vocalizations might include repetitive throat-clearing, sniffing, or grunting sounds. Complex tics are distinct, coordinated patterns of movements involving several muscle groups. Complex motor tics might include facial grimacing combined with a head twist and a shoulder shrug. Other complex motor tics may actually appear purposeful, including sniffing or touching objects, hopping, jumping, bending, or twisting. Simple vocal tics may include throat-clearing, sniffing/snorting, grunting, or barking. More complex vocal tics include words or phrases. Perhaps the most dramatic and disabling tics include motor movements that result in self-harm such as punching oneself in the face or vocal tics including coprolalia (uttering socially inappropriate words such as swearing) or echolalia (repeating the words or phrases of others). However, coprolalia is only present in a small number (10 to 15 percent) of individuals with TS. Some tics are preceded by an urge or sensation in the affected muscle group, commonly called a premonitory urge. Some with TS will describe a need to complete a tic in a certain way or a certain number of times in order to relieve the urge or decrease the sensation.
Tics are often worse with excitement or anxiety and better during calm, focused activities. Certain physical experiences can trigger or worsen tics, for example tight collars may trigger neck tics, or hearing another person sniff or throat-clear may trigger similar sounds. Tics do not go away during sleep but are often significantly diminished.
Self-advocate Jessica Thom on embracing her Tourette’s diagnosis (44 seconds):
Tourette Syndrome Resources
Note- all descriptions come from the websites of the organizations
Founded in 1972, The Tourette Association of America ( https://www.tourette.org/, formerly known as the Tourette Syndrome Association) has emerged as the premier national non-profit organization working to make life better for all people affected by Tourette and Tic Disorders. They do this by:
- Raising public awareness and fostering social acceptance.
- Working to advance scientific understanding, treatment options and care.
- Educating professionals to better serve the needs of children, adults and families challenged by Tourette and Tic Disorders.
- Advocating for public policies and services that promote positive school, work and social environments.
- Providing help, hope and a supportive community across the nation.
- Empowering our community to deal with the complexities of this spectrum of disorders.
Tourette’s Action (http://www.tourettes-action.org.uk/64-resources.html) works in England, Wales and Northern Ireland and is the leading support and research charity for people with Tourette Syndrome and their families. We want people with TS to receive the practical support and social acceptance they need to help them live their lives to the full.
The Kelty Mental Health Resource Centre (http://keltymentalhealth.ca/mental-health/mental-health-challenges-disorders/tics-tourette-syndrome) is a provincial resource centre that provides mental health and substance use information, resources, and peer support to children, youth and their families from across BC. We also provide peer support to people of all ages with eating disorders. All of our services are free of charge, and you can reach us over the phone, in person, or through email.