Celebrities such as Lewis Capaldi and Billie Eilish have opened up about their experiences with Tourette Syndrome, so what really is Tourette’s? Hopefully this post will clear up some myths.
Not everyone with Tourette’s has swearing tics.
Tourette Syndrome is often stereotyped as the condition that makes people swear, This symptom is called Coprolalia. The media often makes out that everyone with Tourette’s swears all of the time, but that simply isn’t true. It is thought that only around 1 in 10 people with Tourette Syndrome have swearing tics (1). However, for those who do experience Coprolalia, it isn’t as funny as the media makes it out to be. Social isolation is no stranger to people with Coprolalia, people with these tics often get dirty looks from others when they are just trying to go about their day. They may face discrimination when seeking employment, as those in management may be afraid of people’s tics offending customers, and people may be asked to leave public venues due to their disability despite that being discriminatory and unfair.
2. Tourette’s isn’t the only condition that can cause tics.
Tics are the main symptom of Tourette Syndrome. They are involuntary movements and vocalisations. Conditions other than Tourette Syndrome which are known to cause tics include Paediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infections (PANDAS), Functional Neurological Disorder (FND), Paediatric Acute Onset Neuropsychiatric Syndrome (PANS), Provisional Tic Disorder, Chronic Motor Tic Disorder and Chronic Vocal Tic Disorder. PANDAS is a condition caused by Strep infections that causes inflammation of the brain leading to tics and/or OCD (2), and often other symptoms. FND is a condition where the brain structure is typical, but the brain's “software” starts sending the wrong signals which can lead to symptoms such as tics, non-epileptic seizures, dystonia and other issues (3.) PANS is a condition that often leads to a sudden onset of OCD and/or eating restrictions plus other symptoms which may include tics, anxiety, depression, sleep problems and a plethora of other issues. (4) Provisional Tic Disorder is the name for when a person has motor and/or vocal tics for under a year. (5) Tourette Syndrome can only be diagnosed if a person has both motor and vocal tics for over a year.
3. Tourette Syndrome typically starts in childhood.
According to the Mayo Clinic, the typical age of onset for Tourette Syndrome is between 2 and 15 years of age, with the average being 6 years of age. (6) Many Tourette’s documentaries show adults with the condition, but there are many children out there with the same struggles. Some people believe that you grow out of Tourette’s, but it is a lifelong condition. (7) Some people’s tics do decrease as they get older, but for some people, the symptoms stay the same (8) or may even get worse over time.
4. There is currently said to be no cure for Tourette Syndrome.
There is currently said to be no cure for Tourette Syndrome, however, therapy works for some people to manage symptoms. Some people take medication in an attempt to reduce their tics, however, these medications can have unwanted side effects. (9) Some people with Tourette Syndrome find that certain foods make their tics worse, so these people may decide to cut those triggering foods out of their diet in an effort to reduce their tics. (10)
5. Tics can be subtle and may go unnoticed.
Some tics are very subtle and may go unnoticed or mistaken as typical movements. For example, a person may have a tic where they bend their toes, but this will not be seen when they are wearing shoes. Throat clearing is also a common tic, but this could just be mistaken as someone having a sore throat. Hard blinking, joint clicking, and gasping for air can all be tics which easily go unnoticed or mistaken for something else. Eye rolling is a very common tic, (11) but some people may assume that a person with these tics is just being rude when that isn’t the case at all as people often do not mean what they tic.
6. Tourette’s and other tic conditions are not rare.
According to the Centres For Disease Control And Prevention, 1 in 50 people have Tourette Syndrome or a Persistent Tic Disorder. (12) Some people may be surprised at this statistic, but we have to remember that some tics are subtle and can go unnoticed. It is likely that you have met someone with Tourette Syndrome or another tic condition before, even if you don’t think that you have. Some people mask their symptoms and may appear neurotypical from the outside, but there is still an internal struggle.
7. Tourette Syndrome is a neurological condition, not a psychological one.
Some people might assume that Tourette Syndrome is a psychological disorder, but it is actually neurological. (13) This is why people often get diagnosed by a neurologist. It is thought to affect part of the brain called the Basal Ganglia. (14) Despite Tourette Syndrome being neurological, the stress of dealing with tics can take a psychological toll on a person, and anxiety can increase tics for some people. (15)
8. Tourette Syndrome is thought to be genetic.
Tourette Syndrome often runs in families. It is said that if a person with Tourette’s has a child, the child has approximately a 50% chance of inheriting Tourette Syndrome. No one gene is thought to be responsible, but research has hinted at a few genes which may play a role such as the HDC gene (16) , the SLITRK1 gene (17), and others. There has been a lot of buzz in the media lately about “Tiktok causing Tourette’s”, however, it is actually a different issue, called “functional tics” that is theorised to develop due to seeing others tic. (18) However, some people have their own theories as to what could be causing an increase in tic conditions, such as infection-induced PANS being seen as another possibility by some advocates.
9. Most people with Tourette Syndrome have another condition running alongside it.
It is said that up to 85% of people with Tourette syndrome have another condition running alongside it. (19) Some of the most common co-occurring conditions include Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), Anxiety, Depression, Sensory Processing Disorder, and Autism Spectrum Disorder (ASD). (20)
10. Many people with Tourette’s can sense when a tic is coming.
A lot of people with Tourette Syndrome experience what is termed a “premonitory urge”. (21) This is an uncomfortable urge which usually presents itself as a physical sensation which comes before a tic. If a person has had tics for a while and is very in tune with their body, they may be able to predict what tic is coming based on how the specific urge feels — but this doesn’t mean that tics are controllable. It is like the warning you get before you sneeze.
References:
1. NHS Choices (2021). Tourette’s syndrome. [online] NHS. Available at: https://www.nhs.uk/conditions/tourettes-syndrome/.
2. Pietrangelo, A. (2018). PANDAS Syndrome: Symptoms, Causes, Diagnosis, and Treatment. [online] Healthline. Available at:
3. FND Guide (n.d.). Functional Tics — Functional Neurological Disorder (FND). [online] neurosymptoms.com Available at: https://neurosymptoms.org/en/symptoms/fnd-symptoms/functional-tics/#:~:text=Tics%20are%20a%20type%20of%20repetitive%20movement%20or
4, Lyness, D. (n.d.). PANDAS and PANS (for Parents) — Nemours KidsHealth. [online] kidshealth.org. Available at: https://kidshealth.org/en/parents/pandas.html.
5. CDC (2022). Diagnosing Tic Disorders | CDC. [online] Centers for Disease Control and Prevention. Available at: https://www.cdc.gov/ncbddd/tourette/diagnosis.html#provisional
6. Mayo Clinic (2018). Tourette Syndrome — Symptoms and Causes. [online] Mayo Clinic. Available at: https://www.mayoclinic.org/diseases-conditions/tourette-syndrome/symptoms-causes/syc-20350465.
7. Psychology Today (n.d.). Tourette’s Disorder | Psychology Today South Africa. [online] www.psychologytoday.com. Available at: https://www.psychologytoday.com/za/conditions/tourettes-disorder
8. GOSH (n.d.). Tics and Tourette syndrome: What have you learnt today. [online] GOSH Hospital site. Available at: https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/tics-and-tourette-syndrome-what-have-you-learnt-today/.
9. Tourettes Action (n.d.). Medication for TS. [online] www.tourettes-action.org.uk. Available at: https://www.tourettes-action.org.uk/70-medication.html.
10. Ludlow, A.K. and Rogers, S.L. (2017). Understanding the impact of diet and nutrition on symptoms of Tourette syndrome: A scoping review. Journal of Child Health Care, 22(1), pp.68–83. doi:https://doi.org/10.1177/1367493517748373.
11, Scheftel, S. (2015). Tics Are for Kids | Psychology Today. [online] www.psychologytoday.com. Available at: https://www.psychologytoday.com/us/blog/evolving-minds/201505/tics-are-kids [Accessed 9 Mar. 2023].
12. CDC (2019). Data and Statistics on Tourette Syndrome. [online] Centers for Disease Control and Prevention. Available at: https://www.cdc.gov/ncbddd/tourette/data.html.
13. www.ninds.nih.gov. (n.d.). Tourette Syndrome | National Institute of Neurological Disorders and Stroke. [online] Available at: https://www.ninds.nih.gov/health-information/disorders/tourette-syndrome.
14. Physiopedia (n.d.). Basal Ganglia. [online] Physiopedia. Available at: https://www.physio-pedia.com/Basal_Ganglia.
15. Tourette Association Of America (n.d.). Tourette Syndrome: Dealing With Anxiety & Stress. [online] Tourette Association of America. Available at: https://tourette.org/resource/tourette-syndrome-dealing-anxiety-stress/#:~:text=Stress%20and%20anxiety%20can%20often%20make%20symptoms%20of
16. MacGill, M. (2014). Rare genetic mutation confirmed as a cause of Tourette Syndrome. [online] www.medicalnewstoday.com. Available at: https://www.medicalnewstoday.com/articles/271058
17. Andrea E. Cavanna, M.D. (2010). Tourette Syndrome. www.psychiatrictimes.com, [online] 27(3). Available at: https://www.psychiatrictimes.com/view/tourette-syndrome
18. Olvera, C., Stebbins, G.T., Goetz, C.G. and Kompoliti, K. (2021). TikTok Tics: A Pandemic Within a Pandemic. Movement Disorders Clinical Practice, 8(8). doi:https://doi.org/10.1002/mdc3.13316.
19. Beale, J. (2022). Ten Facts About Tourette’s. [online] ADHD Foundation. Available at: https://www.adhdfoundation.org.uk/2022/03/15/ten-facts-about-tourettes/.
20. Tourettes Action (n.d.). Managing TS and associated conditions. [online] www.tourettes-action.org.uk. Available at: https://www.tourettes-action.org.uk/74-co-occurring-symptoms.html.
21. Essex Partnership University (n.d.). What are tics and Tourette syndrome? [online] Available at: https://eput.nhs.uk/media/kckln4ii/tics-and-tourette-s-information-leaflet-for-parents.pdf [Accessed 9 Mar. 2023].
