A support group for Otago people with Tourette's syndrome and
their families is being established in Dunedin.
It will be the first outside Christchurch, where the
Tourette's Association of New Zealand was founded by Robyn
Twemlow last September after her 10-year-old daughter was
Mrs Twemlow said there were no Tourette's groups in New
Zealand at the time, and she has since been contacted by
Otago residents seeking help to deal with their Tourette's or
She said there were ''bound to be'' more children with
Tourette's in Otago and many others dealing with its effects,
including teachers, who would benefit from peer support.
''Every single person who's contacted me said they know
no-one else with Tourette's in New Zealand. It's very
isolating and people don't talk about it.''
Mrs Twemlow knew of an 11-year-old girl and a young man with
Tourette's in Dunedin, as well as two young boys with the
disorder in the Maniototo and Twizel.
She aimed to appoint a care support person in Dunedin to
co-ordinate informal get-togethers where children could meet
others with Tourette's and parents could talk to each other.
About one in every 1000 children under the age of 15 was
diagnosed with Tourette's, and based on census data Mrs
Twemlow estimated there were about 800 in New Zealand.
It was a conservative estimate, given many were not formally
diagnosed, she said.
Mrs Twemlow said children with Tourette's were commonly
bullied at school, lacked confidence, were depressed, and
wrongly labelled as naughty or academically slow by teachers
who were unfamiliar with the disorder.
She said Tourette's often started with small repetitive
facial movements such as blinking and twitching, then
developed into stronger physical tics in combination with
vocal tics such as coughing, grunting, stuttering and word
In extreme cases, usually in adulthood, tics included
swearing, she said.
''Most people think it's all about swearing, but that's the
smallest part of it. Only about 10% of people with Tourette's
Of the 70 New Zealanders with Tourette's in the association's
database, and others Mrs Twemlow had talked to, only one had
a swearing tic.
Mrs Twemlow hoped to nationally distribute written guidelines
for parents and teachers about Tourette's, and encouraged
people to contact her by email on: firstname.lastname@example.org
• An estimated 800 New Zealand children have Tourette's.
• There is no formal record of New Zealanders with
• About one in every 1000 children under 15 are diagnosed.
• It is a childhood neurological disorder and cannot start in
• Only 10% of people with Tourette's have a swearing tic.
• Tourette's usually starts with minor facial tics such as
blinking and twitching.
• Diagnosis comes when physical tics are coupled with vocal
tics such as coughing, grunting and word repetition for at
least a year.
• At least three people on Otago have Tourette's; likely to
• About a third of initial Tourette's tics will become so
minute they will not be noticed, a third will stay the same,
about a third will worsen.
• Tourette's is genetic and more common among boys.
• About 90% of people with Tourette's have another disorder
on the autism spectrum, usually attention-deficit
hyperactivity disorder (ADHD) and obsessive compulsive
• There is no known cause or cure.