What is Tourette Syndrome

As someone living with Tourette Syndrome for 32 years, I get asked about it ALL THE TIME!

When I meet someone for the first time, I can already workout if they are the type of person who will let their curiosity get the better of them. I can hear their question before they’ve even opened their mouth.

Tourette Syndrome can be both hilarious and horrible in the same sentence, it all depends on the individual living with it. When I was younger, I hated it, I wanted to be normal like everyone else and these tics caused major embarrassment. Now I LOVE them, they make me and everyone else laugh (With me not at me, there is a big difference)

As an ambassador for The Tourette Syndrome Association Australia and professional keynote speaker I educate the world on Tourette Syndrome while making them laugh too.

But still to this day, on and off stage, I get asked all the time “What is Tourette Syndrome?”

Here are some of the most popular questions I get asked…

Frequently asked questions:

If you’re new to Tourette Syndrome and you have stumbled across this during your deep dive research, I hope these answers help.

How common is Tourette Syndrome?

1 in 100 kids and 1 in 200 adults have TS. However, this statistic is often contested and always prompts this next question.

Do you grow out of it?

Some studies indicate people can and have grown out of it. My very own doctor who diagnosed me, told me I would grow out of it by the age of 18, well, I am 32 and I still tic more than a luxurious Swiss watch. I always say you will NOT grow out of it, because I feel it’s harder on the individual who is counting down the years, months, weeks, days and seconds until it goes away.

 

The night before my 18th birthday I was so excited, thinking I would wake up and my tics would be gone. When I woke up, they were still there I was left confused and let down.

 

Eventually I came to terms (again) that these tics are here to stay and decided to make a living out of it. Now I go to sleep each night and hope these tics don’t leave me because I have bills to pay.

Isn’t Tourette Syndrome when you swear?

Great question, not always. When people with Tourette Syndrome have verbal outbursts of offensive statements or profanity, this is called ‘Coprolalia’. Around 10% of the population of people who have Tourette’s have Coprolalia. Funnily enough the Latin meaning for this word translates to “Shit talk”.

 

Copro = Shit

Lalia = Talk

 

(I feel as though there was a lack of creativity in the doctor’s boardroom that day)

 

But there is a lot more than just ‘swearing’:

  • Copropraxia – Obscene and offensive gestures
  • Echolalia – Copying words and sentences
  • Echopraxia – Copying gestures
  • Palilalia – Repeating your own words and sentences (Not to be confused with stuttering)
  • Impulsions – Random actions, punches, screams, banging, throwing etc…

Is Tourette Syndrome more common in males or females?

Statistically it’s more common in males, however this statistic has a lot of questions around it as well. Females are proven to be much better at masking their tics than males, so when tested, females don’t present symptoms. I dare say a lot more females go undiagnosed when they should be.

Is Tourette Syndrome and Autism a thing?

YES! Absolutely, underneath the Neurodiverse umbrella Tourette Syndrome and Autism are closely connected. There are many conditions in the same family as Tourette Syndrome. ADHD, Autism, ODD and OCD. However, if you have one, it does not mean you have the other. And if you are Autistic and have a Tic, it does not mean you have Tourette Syndrome.

 

To be clinically diagnosed with Tourette Syndrome, you must present both vocal and motor tics for at least 12 months.

Can you control it?

Short answer is yes and the long answer is no. Confusing right? Everybody living with Tourette Syndrome is on their own journey. Personally, I learnt how to manage my tics when I needed to.

 

Starting out my career at the age of 18 as a TV presenter, I didn’t want my tics to display on screen, so I spent months experimenting both physically and psychologically to redirect my tics. Later in life I learnt that this was a technique called ‘CBiT’, Comprehensive, Behavioural Intervention for Tics.

My nephew blinks his eyes frequently, is that Tourette’s?

Even though Tourette Syndrome is a lot more common than people realise, tics are even more common. Many people can have a tic (eye blinking, grunting, sniffing or shoulder jerks) and not have Tourette Syndrome. You must display both motor and vocal tics for longer than 12 months to be diagnosed with Tourette Syndrome.

 

It is very common for children to develop a tic during their adolescents and grow out of it over time. This is why doctors are strict with the 12-month rule. So, if a tic presents itself, start documenting it as early as you can.

Is Tourette Syndrome a mental illness?

NO! Tourette Syndrome is neurological not psychological. However, 25% of people who are diagnosed with Tourette Syndrome also experience depression.

 

Some studies indicate that this is due to social backlash, embarrassment and insecurities. To put yourself in a ‘Ticcers’ shoes, if you had repetitive uncontrollable tics that are extremely eye catching and attract unwanted attention, that makes going out in public very difficult. It also can create negative spirals when the tics are overwhelming. This is why looking after your mental health when you have Tourette Syndrome is extremely important.

 

Seeing a psychologist and practising mindfulness can be helpful to manage your moods.

 

If you’re anxious, stressed or tired, you will tic more. So instead of treating the tic, treat how you feel.

 

(NOTE: If you are experiencing poor mental health, seek medical attention)

Is Tourette Syndrome a learning disorder?

Tourette Syndrome is NOT a learning impairment. Studies have indicated that individuals who have Tourette Syndrome have a higher IQ than people who don’t. But if you have Tourette’s, it may take you a little longer to learn something. This is why allowing extra time for students to complete exercises can improve grades.

 

Times where Tourette Syndrome can be a learning impairment is if the student misses’ school due to insecurities, bullying or the school deeming the student unfit to attend classes.

Does having Tourette Syndrome make dating hard?

NOPE!

 

In my personal experience, I have never had a prospective partner who didn’t like them. Apparently, they are cute, quirky and adds character.

Is Tourette Syndrome hereditary?

The causes of Tourette Syndrome are still unknown, however genetic studies have indicated that it is a dominant gene and parents with Tourette’s have a 50% chance of passing it down.

Here is a video with more answers!

Seamus has a variety of videos talking about Tourette’s. View more on his YouTube channel.

Get in touch with Seamus to learn more.