Tourette Syndrome is one of the most misunderstood conditions in the neurodiversity world thanks to its association with swearing and rude language. But there’s so much more to Tourette’s than that.
Did you know only one in ten people with Tourette’s have Coprolalia (“swearing” tics)?
Here’s a guide to Tourette Syndrome and tics and what you need to know about this complex neurological condition that can affect the daily lives of anyone living with the condition.
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There’s no right answer to this, as they’re both used interchangeably. The CDC in America refers to it as Tourette, while the NHS in the UK refers to it as Tourette’s. As a result, both may be used interchangeably.
Tourette’s was named after Georges Gilles De La Tourette in 1885 after he observed his own son exhibiting similar behaviors, so there is an argument for both use cases.
Tourette Syndrome (also known as Gilles de la Tourette’s Syndrome) is a neurological medical condition which is characterized by the presence of involuntary tics for longer than 12 months at a time. Tics are sudden, repetitive movements, and purposeless movements or noises that people with Tourette syndrome often cannot control.
The symptoms of Tourette’s usually begin between the ages of 5 and 10 years old, and they can be quite mild in the beginning. For some people with Tourette Syndrome, their tics may go away completely as they grow older. However, for others the tics may become more severe and persistent over time.
The symptoms of Tourette Syndrome can be exacerbated by periods of stress, fatigue, weight gain or weight loss, or other potential side effects of certain medications. In addition, the symptoms tend to be more prevalent during school age range.
There are two types of tics: vocal and motor tics. Vocal tics involve making sounds such as grunting, barking, or snorting. Motor tics involve making physical body movements such as blinking, head shaking, or jerking your arms around.
The severity of Tourette Syndrome is generally consistent with the age of onset, duration, type and severity of symptoms. Tourette Syndrome can often be differentiated from other disorders by the presence of multiple motor tics that are involuntary movements, and at least one vocal tic.
The main symptoms of Tourette Syndrome are a history of tics, which are sudden, repetitive and purposeless movements or sounds. These tics often provide an uncomfortable sensation and in extreme cases of limb movements, can be unintentionally violent. Other symptoms can include obsessive-compulsive behavior, ADHD and problems with anger control, depending on how the Tourette has affected the individual over time.
These include eye blinks, shoulder shrugging, nose twitching, lip pursing, and foot tapping. These tics occur without warning and do not cause any distress to the person experiencing them. Simple motor tics are also known as “simple motor stereotypes” because they appear to be random and unpatterned.
These include facial grimacing, neck stretching, arm flinging, leg kicking, and body rocking. Compound motor tics are also referred to as “compound motor stereotypes”. They are less common than simple motor tics but can be very distressing to the individual who experiences them.
These include sniffling, throat clearing, coughing, hiccups, laughing, crying, and shouting. Most vocal tics are non-purposeful, some of which are considered coprolalia (the use of obscene gestures and language).
About 25 to 30 percent also experience symptoms of obsessive-compulsive disorder (OCD). Children with Tourette Syndrome are less likely to have primary learning disabilities. But they are more likely to have attention problems and academic difficulties that may be linked with conditions such as Autism Spectrum Disorder (ASD) or Sleep Disorders.
Many also experience symptoms of anxiety disorders and other mental disorders as well. Because of this, Tourette Syndrome may appear to be like other conditions or medical problems, so always consult your child’s physician for diagnosis if you suspect they might have it.
There is still lots unknown about the cause of Tourette Syndrome, but research suggests that it is caused by a combination of genetic and environmental factors, with family history playing a huge role.
The gene or genes related to Tourette Syndrome are autosomal dominant, which means that one copy of the gene must be passed on for it to occur. If a parent passes on their gene, there is a 70% chance their offspring will display one or more signs of Tourette syndrome.
Complications during pregnancy, low birth weight, and head trauma are thought to be associated with the onset of non-genetic Tourette. Incomplete penetrants mean that not everyone with the gene will have symptoms of Tourette syndrome.
Patterns of inheritance are different between males and females, with 10% chance of inheriting the gene in a male and at least one sign of Tourette in the 90% chance that someone female will inherit it from their father. There is variability in how people express the Tourette Syndrome gene with some having obsessive-compulsive disorder and others having a chronic tic syndrome.
There is no one definitive test for Tourette Syndrome. A diagnosis is usually made after a doctor has conducted a thorough evaluation, which may include a physical examination, medical history, and assessment of symptoms and environmental factors that may have exacerbated more severe symptoms.
A pediatrician, child psychiatrist, or other qualified mental health professional usually identifies Tourette syndrome in children and adolescents. A comprehensive evaluation of the child’s psychological, social and educational status is recommended along with a thorough medical, developmental and family assessment. A detailed history from parents and teachers contributes to making the diagnosis.
As mentioned above, TS often co-occurs with other disorders such as comorbid attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), anxiety disorders, and mood disorders. TS is most commonly diagnosed in children, but adults can also be diagnosed with the disorder.
There is no one-size-fits-all answer to this question, as the treatment in children for Tourette Syndrome will be based on your child’s individual situation and health. Some general factors that will be considered include your child’s age, overall health, and medical history. Additionally, your child’s tolerance of specific medications, procedures, or behavioral therapies is also a consideration in treatment decisions.
In many cases, the symptoms of Tourette syndrome may not be disruptive enough to require behavioral treatments. However, if school performance is affected or if other disorders are present along with Tourette Syndrome, then effective behavioral treatments and coping strategies are available for managing the triggers of Tourette’s.
In more recent years, many adults with Tourette’s have sought out medical treatment of tics by undergoing Botox treatment to target specific limb movements. Most recently, singer-songwriter Lewis Capaldi went public about his Tourette’s and how he underwent Botox to treat his famous shoulder tic that occurs when he’s live on stage. As always, you should seek advice from a medical professional before considering this route.
Tourette Syndrome and its co-occurring conditions can present many challenges. Children with tics can find themselves the victims of bullying and struggle in some social situations where tics into adulthood continue to cause issues. Some common challenges of living with Tourette Syndrome include:
– Coping with the physical and vocal tics
– Managing symptoms and triggers
– Dealing with social stigma and misunderstanding
– Finding support and treatment
Living with Tourette Syndrome can be difficult. Some of the challenges that people with Tourette’s might face include moving schools, as children with Tourette’s often have difficulty in large classrooms. They may also need personalized attention at school, to help them keep up with their classmates and more time to complete assignments.
Despite the challenges that come with conditions like Tourette Syndrome, many people with Tourette syndrome can lead a happy and healthy life with a normal life expectancy. For more information, check out the Tourette Syndrome Association.
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Last Updated on December 23, 2022 by Neurodadversity
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