It was first recognised as a disorder in 1883 by French neurologist Georges Gilles de la Tourette.
It is estimated that one in a hundred people are born with Tourette Syndrome (TS) although only a small number of these people will ever be diagnosed; the majority will have tics that are so mild that they may not even be aware that they have the disorder.
Tourette Syndrome is a paediatric disorder and for a formal diagnosis to be given, both sets of tics need to occur concurrently before the age of 18 – although diagnosis may not be made until adulthood.
As well as tics, more than 85 per cent of those living with Tourette Syndrome also have a co-existing disorder, usually ADHD, OCD, Oppositional Defiance Disorder, anxiety and/or depression.
Much like a fingerprint, each individual with Tourette Syndrome will experience different tics, differing frequency and complexity.
Often motor tics are the first to appear and usually begin as facial tics — blinking and/or grimacing.
These tics usually start to show in early childhood and generally increase or worsen during puberty and teenage years. In most cases the tics will then abate in adulthood.
In some cases however the tics associated with TS will stay the same throughout adulthood and a small percentage will develop more frequent and complex tics as an adult.
For more information about TS, tic disorders and PANDAS, please see this FAQ answered by neurologists at Starship Children’s Hospital.
The most common first step to getting a diagnosis is a visit to your family GP. Often a referral will be made to the local child mental health service, even though Tourette Syndrome itself is NOT a mental health disorder.
The referral to the mental health service is often made to diagnose the comorbid disorders that may be occurring along the tics – most often ADHD, OCD or anxiety.
In some cases a GP may refer you on to a paediatrician or a specialist paediatric neurologist.
When seeking a diagnosis it is useful to take a video of some of the motor and vocal tics that you/your child is displaying as well as a record of some of the tics that have come and gone over time.
A diagnosis will only be made if BOTH vocal and motor tics have been occurring together for more than a year.
If it is an option, seeking a diagnosis from a private neurologist or paediatric neurologist is a much faster process.
In New Zealand there is a private practitioner in Auckland and Christchurch respectively with knowledge of Tourette Syndrome.
Dr Rakesh Patel
Auckland Medical Specialists and Paediatric Specialists
Tel: (09) 638-9945
Mr Paul Shillito
Children’s Specialist Centre
Tel: (03) 337-9470
The exact cause of Tourette Syndrome is not yet known, subsequently there is no known cure.
After a diagnosis it is then the individuals choice to continue living with the tics as they are or to opt to try pharmaceutical intervention. The effects of medication differs for each individual and it does not stop tics from occurring but helps to manage the frequency and severity of tics.
Some district health boards may offer cognitive behavioural intervention therapy (CBIT) however most often this therapy is only available through private practitioners. CBIT works by training the individual to recognise when a tic is about to occur and to over ride that need to tic with a competing action so that the tic does not get the satisfaction of the sensation is was seeking.
There is a private CBIT practitioner is both Auckland and Christchurch respectively.
Cherie Benns Clinical Psychology Services Ltd.
Phone: 027 5050 678