“I can get different reactions in the street . . . (swears) . . . from strangers, whether the reaction is somebody staring at me or giving me a sly look, or whether they’re laughing at me or pointing.”
– 13-year-old Spencer Davies-Monk, My F-ing Tourette’s Family, BBC Documentary.
“These kids look like they’re just getting away with swearing, or is that just me? Some of the stuff looks like they’ve just said it because they can blame it on Tourette’s.”
– Twitter commentator.
“My f-ing Tourette’s family need a bit of tough love. Stop making excuses for them.”
– Twitter commentator.
“If you understand how much abuse they get, if you understand how much it precludes them from being included in all sorts of events, you would understand that there is nothing to gain by making it up.”
– Suzanne Dobson, Chief Executive, Tourette’s Action.
“Would they tell somebody who had Down’s syndrome that they’re making it up? It’s a neurological condition. I shouldn’t be treated differently from anybody else.”
– Spencer Davies-Monk.
There are many myths and misconceptions about Tourette’s syndrome (TS).
That it’s all about swearing and inappropriate behaviour.
That those who have the condition are making it all up.
That it’s amusing, something to laugh at and shorthand for conduct that cannot be condoned.
The quotes above are a case in point.
13-year-old Spencer is laughed at, mocked and accused of faking it.
The response from some on social media (no surprise) is far from understanding or sympathetic.
“Do these kids have Tourette’s or do they have behavioural issues that go unchallenged by the parents?” asked one sceptic on Twitter.
Spencer’s brother, who also has TS, is branded ‘a chancer who is getting away with horrendous behaviour’.
This isn’t an uncommon reaction.
Given the negative perceptions that surround Tourette’s and those in its grip, busting the misconceptions and myths and increasing awareness and understanding is so important . . .
So consider the following:
TS is an inherited neurological condition that affects one in 100 school children in the UK.
Tics (involuntary/uncontrollable sounds and/or movements) are a key feature.
Some with TS do swear and make inappropriate comments, but this affects a minority (less than one third).
It is common to experience co-occurring conditions, including anxiety, OCD, ADHD, anger, depression and autism spectrum disorders.
In the UK, around 300,000 people have TS.
In our experience, faking it offers no advantages or rewards.
This is just a snapshot, written to mark Tourette’s Awareness Day, but for those keen to find out more, the Tourette’s Action website is a good place to start.
Does YOUR child have tics or demonstrate behaviours that indicate TS?
There is no cure as such, but effective therapies and treatments are available.
Gaining access to the above can be problematic, with CAMHS services often telling families that TS doesn’t come under their remit, although often, associated conditions, such as depression and anxiety, do lead to a referral and treatment. Some clinicians and therapists are unwilling to undergo training.
Here at CPUK, we’re determined to buck the trend and offer tic therapies, including ERP (Exposure and Response Prevention) and HRT (Habit Reversal Therapy).
Like to find out more about our tic therapies and the benefits on offer?
Please contact us. These therapies can be extremely effective and, for those who have struggled to access support elsewhere, it’s a useful first step in tackling TS, its associated conditions and the issues that can and do arise as a result.
Our research here suggests that although difficult to access, those with TS (and their families) do want and need such services and support.
It’s our hope that, as understanding improves and awareness is raised, the struggle will ease.
Because TS isn’t uncommon.
Because it is a complex condition that is misunderstood.
Because those demonstrating such symptoms are almost never making it all up.
Because our support and understanding is required.
Like to find out more about CPUK, tic therapies and the options on offer?
You can always contact us here.