Disability Awarness #DisVis, from 15th March until 26th March

Busting Myths: Tourette's Syndrome

← back to DisVis home

Busting Myths: Tourette's Syndrome

Anon

What is Tourette’s Syndrome?

Tourette’s Syndrome (TS) is a misunderstood condition commonly featured as a punchline in the media. It is a joke in South Park, a comedic way of stating you just say whatever is on your mind, and is even used to humorously explain why you swear so much.

This is not what Tourette’s Syndrome actually is. With this usually being the only representation of Tourette's many people will come across, it is no surprise myths and misconceptions of Tourette’s Syndrome run rampant.

Tourette’s Syndrome is a neurodevelopmental disorder which usually begins in childhood or adolescence, although very rarely it can be triggered in adulthood. It is characterised by repetitive, sudden movements and vocalisations (tics) which are outside of the person’s control, which must be present for 12 months. It can often co-occur with other disorders, such as ADHD, anxiety, depression, and OCD.

Tics are divided into four categories: simple motor tics (smaller movements), complex motor tics (larger movemets and gestures), simple vocal tics (such as clearing your throat) and complex vocal tics (sayings words and phrases, sometimes repeating your own words or others).

Tics can become worse when tired, bored, feeling heightened emotions such as anxiety, or when thinking or reading about it.

My housemates can attest to how much I ticced while writing this article. It was a lot.

 

Myth #1: Tourette’s is a disorder which makes you swear

This is the most common myth I, as a person who has Tourette’s Syndrome, have encountered. It is also the one which frustrates me the most, even as someone who has swearing tics.

While it is true that coprolalia (inappropriate vocal tics such as swearing, insults, and slurs) and copropraxia (inappropriate motor tics such as rude gestures) do exist, the vast majority of people who have Tourette’s Syndrome do not experience them. In fact, the NHS estimates only 10% of people who have Tourette’s Syndrome experience coprolalia.

Tourette’s may force you to swear or say rude things as tics, but this does not make it the “swearing disorder” anymore than it is the “sniffing disorder” or the “shoulder-shrugging disorder”.

Myth #2: Tourette’s allows you to say whatever you want and get away with it

One of the most common things said to me after I explain Tourette’s Syndrome to someone who does not have it, is that they’d like to have Tourette's because they could say whatever they want and get away with it. This is even something seen in the media (looking at you, South Park).

Unfortunately it does not work like this.

Particularly among people with coprolalia, it is important to us that nobody doubts us when we say something is a tic; this is why many of us will not try to pass off an outburst as a tic. Most of us will be upfront if something was or was not a tic, because if we tic something inappropriate we do not wish to be accused of genuinely thinking and feeling it.

Furthermore, having Tourette’s Syndrome does not save us from people who will publicly judge or criticise us for ticcing. You cannot “get away with” a rude or inappropriate tic simply by stating you have Tourette’s Syndrome; people will attempt to hold you accountable for what they see as rudeness or prejudice, when it is they who are being prejudiced at worst and rude at best, and may indeed claim you are faking to avoid punishment.

Myth #3: Tourette’s is controllable, and you can stop ticcing whenever you want

Some people with Tourette’s Syndrome can suppress their tics, although this requires a lot of focus and energy. Suppressing tics can cause bodily sensations, such as burning or tension, in the body parts where the suppressed tic takes place. It is uncomfortable, and can cause large outbursts of tics and tic status / tic attacks (events where tics are unsuppressable and constant, lasting anywhere from a minute to over two hours).

People can suppress for many reasons. Some may suppress in class to avoid distracting others, some may suppress at the dentist’s to avoid injuring themselves or staff, and some may suppress to avoid the bullying, harassment, and abuse so often experienced by those with tic disorders because our tics are deemed as “weird” and therefore “bad”.

One does not choose to have Tourette’s Syndrome, and one cannot simply choose to no longer have it. A person may put effort into suppressing tics in situations where they feel they will be judged or punished for ticcing, but this does not mean they no longer have Tourette’s. They will continue to tic in private.

People with Tourette’s should never be forced to suppress if they do not wish to. It is rude to make someone suppress.

Myth #4: Tourette’s Syndrome is curable

Tourette’s Syndrome is not curable, although some treatments are available to help those with disruptive tics which have a profound effect on their quality of life. Some treatments which can help to control tics include:

Tourette’s Syndrome is not curable, but the effect of tics on quality of life can be alleviated with treatment such as behavioural therapy, habit reversal training, exposure with response prevention therapy and medication.

Many do not need treatment, and some people may choose to not use treatments offered for a variety of reasons.

Children may outgrow tic disorders by the time they reach adulthood, but not all do.

Myth #5: If you tic, you have Tourette’s Syndrome

There are many reasons someone may tic, and ticcing does not automatically mean you have Tourette’s Syndrome. Although sometimes tics may be part of a serious health condition such as Huntington’s Disease, sometimes people just tic without a known cause.

There are other tic disorders than Tourette’s Syndrome, such as:

  • Transient tic disorder (also known as provisional tic disorder) -- tics, usually motor but occasionally vocal, which last only a few weeks or months. Sometimes this is given as a provisional diagnosis until the 12-month minimum limit for Tourette’s Syndrome or a chronic tic disorder is reached.
  • Chronic motor tic disorder -- exclusively motor tics, complex and / or simple, which persist for a minimum of 12 months, although the same tic is not required to exist throughout this time period for a diagnosis to be possible.
  • Chronic vocal tic disorder -- exclusively vocal tics, complex and / or simple, which persist for a minimum of 12 months. Like Chronic Motor Tic Disorder, one does not need the same tic to exist for the entire 12 months in order to receive this diagnosis.
  • Unspecified tic disorder -- tics are present but don’t meet the criteria for any specified tic disorder.

Some people may also tic due to medication, and others find they might tic purely in response to a certain feeling, such as anxiety.

Myth #6: It is easy to spot someone who has Tourette’s Syndrome

Some people tic openly, loudly, and proudly. Some prefer to suppress their tics until in private. Some have very obvious, constant tics. Some may tic once or twice a day, in very small and unnoticeable ways.

No two people with Tourette’s Syndrome are alike. If I put myself and two of my best friends, who also have tic disorders, in front of you, you would most likely be able to identify me as having Tourette’s quickly due to my large, expressive motor tics; my loud vocal tics; and my lack of interest in suppressing them. However, it may be harder to spot the other two due to one of them ticcing very rarely and only when tired, and the other suppressing their tics in front of most people and only ticcing when comfortable at home.

Some of us are obvious, yes, whether by choice or by the way in which our Tourette’s presents; others cannot be identified at first glance.

Myth #7: Tourette’s is a form of psychosis

I’m honestly not sure where this myth came from, but I theorise it might be something to do with the similarities between tics and the stereotypies (repetitive or ritualistic movements and vocalisations) found in various psychotic disorders.

Tourette’s Syndrome is not a form of psychosis. It does not involve hallucinations or delusions, although some tics may mimic the disorganised or interrupted speech found in psychotic disorders.

This is not to say that a person with Tourette’s Syndrome cannot also have a form of psychosis; the two are not mutually exclusive, but they are not the same.

Myth #8: Vocal tics say what a person is secretly thinking or feeling

No, I don’t actually think the vibes of the door frame I just slapped are excellent. No, I’m not actually kin with Thomas the Tank Engine. No, and I say this with great enthusiasm, I actually don’t love bread; in fact, I think it’s one of the worst foods to exist.

Some people do have tics which force them to tell the truth, but for most of us our tics have nothing to do with what we are secretly thinking or feeling. Vocal tics are usually nothing but word salad, just a bunch of words slammed together and forced out of my mouth at high speed.

Myth #9: Tourette’s Syndrome is a bad thing and people who have it are ashamed of it

Everyone's experiences with Tourette’s are different. Some are indeed ashamed of it and find it makes their lives hard. For some, their dislike of their Tourette’s Syndrome comes from the trouble their tics cause them, and for others they have internalised the shame forced upon them by others who have bullied, harassed, and abused them for their tics.

For me, Tourette’s Syndrome is part of my daily life. I wake up, I tic, I eat, I tic, I shower, I tic, I go to class, I mute my mic so people aren’t interrupted by me ticcing. I’m told I even tic during my sleep. Some days I tic more, and some I tic less. Tourette’s is simply a fact of existence for me; just as the earth must turn, I must tic.

I am not ashamed to have Tourette’s Syndrome. While it can sometimes make my life difficult (such as the three month period where I had a tic that made me slap any bottle off of any surface in front of me), awkward (such as the time I loudly ticced a swear word at a squirrel just as I exited the Hive), or even painful (such as the tic attack which left me with pulled muscles and a black eye), it is still not something I am desperate to get rid of.

Nowadays I do not suppress my tics except in very specific circumstances. I tic loudly and proudly in public in the hopes that maybe someone else with a tic disorder and less self-confidence, who has internalised the shame forced upon them, will see me and find the courage to let themselves stop suppressing, if only for a second, if only for one tiny twitch of the shoulder or a small clearing of the throat.

 

 

For more information about ideas discussed here, feel free to continue learning...

For more information about Tourette’s Syndrome, I recommend visiting the following sites:

https://www.tourettes-action.org.uk/

https://www.cdc.gov/ncbddd/tourette/facts.html

https://tourette.org/

 

-->