Demystificerend Tourette-syndroom: wat u moet weten

Demystificerend Tourette-syndroom: wat u moet weten

juni 8, 2020 0 Door admin

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Paul Stevenson, Tourette Syndrome Inclusion Campaigner, Advocate, Public Speaker, Photographer

Paul Stevenson, Tourette Syndrome Inclusion Campaigner, Advocate, Public Speaker, Photographer

@goldylookfleece

Today is Tourettes Awareness day (June 7) and it is coming to the end of Tourette Syndrome Awareness month (May 15 to June 15). I have seen lots of great engagement and information circulating. However, as is standard with social media these days not all content is accurate or even helpful so I thought I would write this week about this much misunderstood condition.

When I worked with the BBC on the first series of Employable Me I met an incredible man named Paul Stevenson. At the time Paul was trying to find work and learn to adjust to his late onset Tourette Syndrome. He has severe motor and verbal tics as well as Coprolalia, meaning that some of his verbal tics contain obscene or potentially offensive language.

Since our first meeting back in 2015 Paul has become an excellent photographer as well as a brilliant advocate and public speaker. He now helps others through solidarity, empathy and by raising awareness. I reached out to him before writing this article to ask him what he wished more people knew about Tourette’s and what they could do differently to make life easier for people with the condition. He told me that the main thing he wishes people would do is ask him questions. He pointed out that in his daily life when he makes unexpected noises “people stop and stare, and they’re puzzled.” Rather than act defensively, or even angrily, he says: “why not ask questions, I’d love people to ask me questions.”

This is of course an excellent point. People are generally afraid to be direct about such matters and as a result don’t learn and grow in their understanding. So to help, here are some things we think you should know about Tourette’s.

It’s Not Just Swearing

The vast majority of people with Tourette Syndrome do not use rude language as part of their tics. This is a specific condition known as Coprolalia that affects less than a third of people with the condition. Copropraxia is the motor tic equivalent in which people make involuntary rude or obscene gestures and also affects only a minority of people with the condition. This may surprise some of you to read as when we hear about Tourette’s on the TV this tends to be what they show. If you work alongside someone with TS or perhaps are interviewing them for a position, asking them how the condition manifests for them specifically is a good idea, as long as they are happy to share and it is relevant to supporting them in the job.

60% of people who have Tourette’s also have ADHD

There is much overlap between these two conditions meaning that hyper-focus, distractibility and hyper-arousal all have a part to play. ADHD-ers like myself have the ability to hyper focus and be extremely productive, but we also get burnout from this which needs to be accommodated. Hyper-arousal from regular tics can leave someone exhausted and in need of rest.

People With Tourette’s Have Many Talents

Being neurodiverse means having a spiky profile, something I have talked about before. This means that whilst there are areas in which someone with TS may struggle such as hyper-arousal leading to tiredness, or distractibility, they also tend to have increased ability in other areas such as creativity, hyper-focus or verbal communication. You should never assume what a person is capable of.

There Are Simple Ways To Accommodate TS In the Workplace

The first thing you should do when trying to accommodate an employee with TS is have an open discussion about how their condition manifests and then work together to see what can be done. Providing tic breaks can be very helpful, as well as understanding that tics wax and wane so where possible be open to temporary task reassignment or a flexible schedule to allow periods of high intensity ticking to pass.

There is of course also the social and emotional factor. No one should ever be shamed or made to feel bad for their tics, they may however not feel comfortable if they feel watched or that they need to be quiet or still in order to not distract others. If this is a concern for someone, see if you can adapt your workspace to provide extra privacy, that may help.

Don’t Be Afraid Of Being Awkward

In my personal experience of working alongside people with TS for many years, one thing I have learned is that the condition comes with a requirement for a good sense of humour and a willingness to talk about it. Don’t miss out on the talent available to you because you are too afraid to have an awkward conversation!

Acceptance Is the Best Accommodation

To end with another quote from Paul, when asked what he most wanted people to understand he said “there is no medication, and there’s no cure, and a lot of the therapies don’t work. So I’m thinking that in order to make allowances for people with disabilities and to get inclusive, there’s no real investment with Tourette Syndrome other than acceptance.” And again, he is absolutely right. Once you know that there is no intention or meaning behind these tics it becomes easy to be around them. For the wider population to get comfortable with Tourette’s would be life changing for many.


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