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Understanding Tourette’s: Through Holly Brown’s eyes

Holly and her cat George outside their home
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Tourette’s was first recognised as a neurological condition in 1886. Unbelievably, it is still not recognised as a disability in New Zealand. Tourette’s sufferers are often bullied, labelled as ‘misbehaving’, as having ‘a mental health issue’ and have been subjected to ridicule. Holly Brown is desperately keen for society to understand it, accept it, and most of all, to respond in kindness.

Holly Brown is an 18-year-old, gifted, articulate, woman who resides in Napier. She also happens to have Asperger’s and sudden onset Tourette’s.

Holly first experienced tics (involuntary movements or sounds that occur repeatedly) when she was 14 years old, after which she suffered a breakdown from prolonged bullying at school.

Kate Brown, Holly’s Mum said although Holly has always been a bit different, they were unaware at the time that she had Asperger’s.

She was able to mask her autism her whole life incredibly well.

In high school, when Holly finally reached her breaking point, her Tourette’s exploded onto the scene.

All her masking techniques and coping strategies for managing her autism stopped working and she began to suffer panic attacks and extreme anxiety.

Within two weeks, she went from never having ticced before, to suffering near constant tics of every kind.

Kate says that they later found out that this explosive onset of Tourette’s is not uncommon in teenagers who have never experienced ticcing before.

“At the time it was incredibly distressing and overwhelming,” says Kate.

“We soon learnt that Tics are exhausting, they can be suppressed but it is often very painful to do so and generally only results in an explosive build-up of tics later on.”

The doctors they saw were baffled and none of them had any experience with Tourette’s.

Holly was prescribed strong medications which suppressed the outward expression of the tics but not the need to tic.

Unfortunately, the medication often left Holly sedated, tired and out of sorts.

She no longer takes any medication for her tics, as she couldn’t find any that worked.

“Having Tourette’s is embarrassing,” explains Holly. “You don’t want to be making involuntary noises or actions.”

Holly goes on to say that the fact that it’s not considered a disability in New Zealand gives the implication that she is somehow doing this on purpose, which she understandably finds quite upsetting.

Educating society

Tourette’s and Tic disorders are not well understood. There is a lack of research in this area and no clear pathway to diagnosis for many children in New Zealand.

Around 6 in 1000 people are born with Tourette’s. Although only a few of those people will ever be diagnosed.

It is a neurological paediatric disorder and is not a mental health disorder.

There is very little known about the cause of Tourette’s and there is no cure.

Tourette’s is considered a comorbid disorder, which means sufferers are highly likely to experience other associated conditions or disorders at the same time. Common comorbidities include anxiety, depression, OCD, and ADD/ADHD.

Due to Tourette’s presenting itself along a spectrum, as well as the entanglement of comorbidities – school is often a huge challenge and children are wrongly labelled as having ‘bad behaviour’.

You have no control over what your body is doing, and you have no idea when it’s going to happen or how bad it’s going to be,” says Holly.

 

Tourette’s is often associated with ‘swearing’ and as such has become the butt of jokes by some people.

In reality, 10% of people diagnosed with Tourette’s suffer from Coprolalia – the involuntary outburst of socially inappropriate words, gestures or remarks.

People who suffer these kinds of tics can feel humiliated, embarrassed, and can sometimes be left feeling guilt-ridden over unwillingly offending someone.

“Because Tourette’s is not well understood,” says Holly. “Out in public you feel afraid of not being believed that they’re tics – that people think it’s you doing it.”

“I’ve seen it portrayed as funny on social media, but as a Tourette’s sufferer I can tell you it’s not.”

“Just going outside is brave,” says Kate.

“Being a reserved and very polite person, Holly is mortified when she experiences these kinds of tics in public.”

Kate explains that in the early days of Holly’s diagnosis there was very little information and support for Tourette’s.

The only source of support she received was from the Tourette’s Association parent Facebook page.

Surprisingly, still to this day, the Tourette’s association, that was started in 2013 by a mother who struggled with the lack of research, support, and understanding around her child’s diagnosis, is still the only main source of education and support for people affected by the disorder.

Holly hopes that one day soon people with Tourette’s can get the help and support they need because New Zealand will recognise it as a disability.

What would disability recognition mean?

Being recognised as a disability is an important step for people affected by Tourette’s.

It could mean funding, education, research, financial support as well as support for medication, health and well-being.

This could go a long way toward helping sufferers lead a more normal life.

“I would like it to be considered a disability because it is,” says Holly. “If your brain makes you do things involuntarily, and this prevents you from doing things like driving and working – then you are disabled by it.”

“There are definitely levels of Tourette’s, and mine is in the more intense end. But that is true of other disabilities like blindness and epilepsy, people also suffer them to different degrees but it is still recognised as a disability so sufferers can get support and understanding.”

Holly goes on to say that Tourette’s is recognised as a disability in many other countries around the world. She finds it strange that New Zealand doesn’t see it as one.

Research and education are also integral to the change that needs to occur in society, where instead of empathy for the disorder – there can often be ridicule.

Many of those affected by the disorder and its comorbidities, find it upsetting to hear people make throw away comments like, ‘I’m depressed’ when they are having a bad day.

Or ‘I’m so OCD’ because perhaps they like a tidy benchtop. There have also been incidences of people heard yelling ‘Tourette’s’ in the workplace after they swear.

Perhaps as a society we need to reflect on the importance of our language, and the words we use to describe our daily lives.

When asked what she would like people to know the most about Tourette’s Holly said,

It’s not cute or funny. It’s every day and all the time for me. The tics are actually painful – I have injured myself many times. It makes social anxiety worse.”

 

“I also want people to know that for anyone starting out with sudden onset Tourette’s, it’s important to know that it starts out violent and often, but it usually settles down over time.”

She also hopes that people will respond with patience and kindness.

It is inspiring how brave Holly and many others suffering from Tourette’s must be just to go about their daily lives.

Stephanie Weller, mother of a daughter with Tourette’s sums it up beautifully when she said,

“We need to socialise the condition more, but also as society be more open and kind.”

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