Tourettes: An Interview With Advocate Paul Stevenson.

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It’s Tourettes Awareness month and I must confess to not knowing as much as I would like to know about the neurological difference that can provide great challenges to those affected by it.

We have all seen the stereotypical verbal tics some people with Tourettes can display, we may even have laughed along with them in tv shows as they blurted swear words and random phrases.

Sadly, due to ignorance of the public perception of Tourettes , the physical tics are often overlooked.

They can range from slight barely noticeable movements to the more extreme and frighteningly intensely painful.

After seeing Paul Stevenson on the BBC show Employable Me I had to interview him, his struggles with Tourettes touched me.

Socially it can be very hard as Paul showed us in the programme and gaining employment for someone who can be verbally unpredictable and in some cases socially inappropriate through no fault of their own can prove virtually impossible.

More awareness needs to be raised with more education given to the general public.

Acceptance is paramount so that this complex condition can be learned about and above all welcomed with inclusion given to all.

People should not be thrown out of bars, clubs and cinemas because there’s little to no understanding of why they and how they react to certain situations.

It’s the most blatant discrimination akin to an Autistic being asked to leave an establishment due to having an overload brought on by sensory processing difficulties or a meltdown due to uncontrollable frustration and anxiety.

Like Autism, Tourettes can make social interaction and communication a challenge and anxiety from this can then trigger the severity of the tics to an uncomfortable and in some cases painful level.

Paul was a pleasure to speak to and the following interview will, I hope, educate and enlighten you as much as it did me.

Following are the questions I asked Paul with Paul’s answers:

Me: When did Tourettes first begin to affect you?

Paul: It wasn’t until 6yrs ago aged 46 yrs old that i realized i had TS it kind of exploded out of me after a series of tragic events ( PTSD ).

Me: What are the symptoms of Tourettes?

Paul: The key features of Tourette Syndrome (TS) are tics; both repeated movements and sounds that are chronic (long-term) and involuntary. Someone with TS may be able to suppress their tics for a period but eventually they have to let them out.

Me: What do you find most challenging about having Tourettes?

Paul: I have full blown Tourettes plus , while my tic’s are a proper pain literally and keep me house bound a lot of the time ,its the co-morbities OCD, ADHD, depression, anxiety, and sensory processing disorder , which really get to me while i can battle through the tic’s and get respite in quiet periods the comorbs are always there.

Me: Tell me all about Employable me , how did you come to be on it?

Paul: Employable Me , I was contacted in 2015 around November to make a pilot program for the BBC , I wasn’t meant to be in the final production because of my age ,it was directed to folk in their twenties who had problems getting work due to neuro-diverse conditions , it was a huge gamble putting my life on display , especially with the governments stance being down on the sick and disabled more or less demonizing us calling us scroungers

But i felt it had to be done to show folk we are part of society and we contribute to society , to help change perceptions .

Me: Was it a positive experience?

Paul: Positive experience ?It was one of the hardest things I’ve ever done and nearly finished me off close to a breakdown took me out of my comfort zone and away from my very strong support network , over 90 hrs filming for 30 mins TV I have to say hats off to the production team they bent over back wards to cater for my health needs, but it was still hard work … was it worth it i would say hell yes , for the positive reaction and how the public received the program and fingers crossed the series went some way to help change peoples perceptions.

Me: Your appearance has definitely raised a lot of awareness but what else can we do to encourage acceptance?

Paul: The only way forward is to as a collective all neuro-conditions is to stick together strength and support in numbers and to keep getting out there and and fighting for our right in society and proper education for our children acceptance from our peer’s , the world doesn’t owe us anything we need to push for understanding, empathy not sympathy !

Me: What do you find helpful and what do you find triggers you?

Paul:. I find peoples attitudes helpful , folk coming up talking to me rather than following me or laughing or even filming me , I try not to get angry at blatant ignorance , and if possible try and inform and educate . Things that trigger are being in a public setting , stress makes my tic’s worse , sensory issues trigger tic attacks meltdowns .

Me: What does your Tourettes mean to you and what advice would you give to a newly diagnosed parent to help their child understand themselves?

Paul: I have Tourette syndrome but it doesn’t have me.

Having it all my life even though it was mild, TS as become entwined in my personality but it doesn’t define me . My advice is try to live along with TS embrace it don’t fight it, if you start to fight against it and hate it you will have a life long battle.

Living with full blown TS is difficult so my recommendation is to get a good strong network support around you starting with yourself.

You need to believe in you, accept your condition, and then expand this to family and friends and then support groups. It’s the only way forward, don’t go locking yourself away at home be loud and proud and let your light shine.

Me: There are many so called treatments pushed at parents including CD/MMS to ‘cure’ Autism, Tourettes, ODD and other neurological differences, what would you say to a parent tempted to try these?

Paul: There is no cure no specific medication designed for TS, lots of meds and anti-psychotic meds which will subdue your tic’s but have many side effects which are unpleasant and create other issues. If you or your children wish to go down this path this is a personal decision and needs lots of research, I am not a doctor or medically trained so i cannot recommend anything other than life skills and techniques i have found beneficial.

And this is to love life, be creative, help and support others and tap into that inner strength that you have , be proud because not everyone can walk 5 meters in your shoes let alone a mile.

Paul’s wonderful photography was featured in the programme, below there’s a website and Facebook page people that you can purchase his work from, there’s also a YouTube link to scenes from Employable Me and viewers should be advised that it contains strong language.

It was a pleasure to speak to Paul, the many similarities between Autism and Tourettes are fascinating.

Like the Autistic community the Tourettes community deserve recognition and respect that can only come from an altered public perception and admittance that without us the world would be a grey and cold place indeed.

https://youtu.be/a8rt2pOblcs

http://www.tourettes-action.org.uk/67-what-is-ts.html?7

https://www.kingandmcgaw.com/prints/paul-stevenson

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