Tourette’s Syndrome
- Neurological, genetic condition
- Motor and vocal tics
- Usually starts in childhood around age 5 to 7
- 90% of people with Tourette’s are NOT compelled to swear
- TS is more prevelant in boys
What are tics?
Involuntary, abrupt, movements and sounds that occur individually in bouts.
Tics are separated into two categories:
- Motor tics = any body or muscle movement tics
- Vocal tics = any tic that involves making a sound
Tics can be categorised further into another two categories:
- Complex tics = motor examples would be jumping, twirling, touching objects and obscene gestures (copropraxia). Vocal examples would be saying words or phrases, saying socially unacceptable words (coprolalia) and repeating a sound or words (echolalia)
- Simple tics = motor examples would be eye blinking or rolling, shoulder shrugging, limb and head jerking. Vocal examples would be whistling, throat clearing, sniffing, coughing, grunting and animal sounds
Typical Course of Tourette’s Syndrome (TS)
The condition normally starts at around age 5, peaks at around age 13 and can fade away by age 21 however this is not always the case.
It waxes and wanes throughout this period but usually gets worse towards the age of 13 before generally improving by age 21. Again this is not always the case but is just a generalised statistic.
The condition can also only appear later in life, after the age of 18 in some cases.
The condition has three ways it will change as you get older:
- A third of people with TS will experience their tics getting worse as they grow into adulthood
- A third of people with TS will experience their tics staying the same going into adulthood
- A third of people with TS experience their tics significantly decreasing going into adulthood
What causes Tourettes? (TS)
There is currently no fully established cause for Tourette’s Syndrome but there constantly more research being done to find out more about the science of the condition
Some of the factors that we know contribute to the development of Tourette’s are:
- The brain = when scanning the brains of people with TS they have found that parts of the brain function differently or have a slightly different size. There is most likely an imbalance in the function of brain neurotransmitters. There are also theories around the part of the brain called the basil ganglia.
- Genetic factors = TS is a genetic condition that in most cases runs in families. Research so far has shown that the genetic cause of TS is not a single gene but that there are variations in many genes that increase the risk of developing TS. There is so much research still being done into the genetic factors of TS.
- Environmental factors= factors in the environment as the brain is developing may influence the risk of developing tics. It’s likely that environmental factors interact with an individual’s genetic makeup-up to determine the risk. There have also been theories linking infections as a possible factor to trigger TS or make it worse.
How many people have Tourette’s?
10% to 20% of people have a probable tic disorder or transient tic disorder.
5% of people have a chronic tic disorder with a motor or a vocal tic.
1% (that includes me!) have full-blown Tourette’s Syndrome with both motor and vocal tics.
About 10% to 20% of all children have some form of temporary tics!
It is more common in boys than girls with a 3:1 ratio.
What conditions are comorbid with Tourette’s?
– 85% of people with Tourettes also experience co-occurring conditions
– Some of these comorbid conditions include:
ADHD = Attention Deficit Hyperactivity Disorder
OCD = Obsessive Compulsive Disorder
Anxiety disorder
Depression
ASD = Autistic Spectrum Disorder
Sleep problems
Sensory Processing Difficulties
What are the chances of me growing out of it?
As children grow into adulthood tics resolve in about 33% of cases.
Tics become much less severe in another 33%.
For the last 33%, Tourette’s is a lifelong condition and can be very severe.
Some very useful information is available online. Here are some of the best links for you.
National Health Service Tourette’s Syndrome
Tourettes Action (TA)
- A wonderful charity that helps people like me and their families. If you have Tourettes and live in the UK do check this link out.
Great Ormond Street Hospital (GOSH)
Great Ormond Street Tourette’s Syndrome Information Pack
- This has information for families, teachers, schools and young people too.
Tourette Association of America (TAA)
New Jersey Center for Tourette Syndrome (NJCTS)
- I have had the pleasure of working with NJCTS in the past and they have some amazing information and resources on their website
Disability help
Tourette’s Syndrome is considered a disability which means there are a few things you can apply for if you feel they would benefit you. However it is important to know that not everyone is eligible for these as it depends on how much your tics impact your daily life.
- Blue Badge = this can help with parking if you have mobility difficulties
- Disability living allowance (DLA) = this is for under 16’s
- Personal Independence Payment (PIP) = for adults over age 18
- Sunflower lanyard = anyone with any disability can wear one of these and no proof of disability is required when purchasing one
- Freedom Pass = these are only for people living in London but you can apply to get free public transport
- Access card = it is used to quickly and easily have your access requirements recognised in various venues. It also allows you to bring a carer to venues such as cinemas with either a free or reduced ticket price