Interview: Aidy Smith on Living with Tourette’s Syndrome

Meet Aidy Smith. Aidy is an award winning TV presenter, speaker and journalist with a particular focus on drinks, lifestyle, travel and diversity topics. As a presenter and producer of the widely successful TV series on Amazon Prime, The Three Drinkers, Aidy proudly flies the flag for LGBTQ+ communities and those with disabilities.

He is one of the only TV presenters in the world with Tourette syndrome, and he actively pushed to raise awareness on this topic. We asked our North West Tourette’s Support Group to submit their questions to Aidy. Read his interview here:

1. How old were you when you first developed tics?

My first tics started appearing when I was about 7 years old. I remember them coming out of nowhere then getting quite prominent. It was pretty daunting given I had no idea what was happening to me or why it was happening. My first tics were a cough, a ‘woop’ like sound and a squeal/scream. They then developed into more serious tics like a neck jolt which put me in quite severe pain.

2. What was it like for you growing up with Tourette’s Syndrome?

Honestly? Terrifying. There just wasn’t enough support via healthcare or community groups which is why groups like yourself are SO important and make such a profound difference to the happiness of children with disabilities.

My GP had no idea what I was going through or what to diagnose it as. It was actually one of my teachers who had watched a documentary and mentioned to my mum at a parents evening that she felt I may have Tourette Syndrome.

During the younger years the bullying was rife – when kids don’t understand something they make fun of it and given the lack of awareness surrounding TS from around 7-12 the bullying was quite substantial. I was left out, ostracized, purposely not invited to parties, perceived to be a troublemaker and made to feel like I was a bad influence to other children. I was purposefully forgotten. It was quite heartbreaking when I think back on it – one of the reasons I shout so loud now is because I never want another kid to have to go through such a harrowing and soul-destroying experience. I was just a lonely little boy, and no one wanted to be my friend.

As I got older, I developed more confidence and when I entered ‘senior school’ at the age of 13 I asked the headmaster to announce in assembly that I had TS and to explain what it was. From there 95% of the bullying stopped and my life in school was more bearable – making friends was still difficult though. It just goes to show how we need to normalize things like TS and remove the stigmas associated with them.

3. Did you always want to become a TV presenter?

The irony is that I was a child actor before my TS developed! I was in a TV Series on CiTV from 1996-1999 called The Big Bag. Sadly, once my tics were more prominent, I decided to give this career up altogether. The lack of support and grief I got from other kids just got rid of the enjoyment and it was too difficult to go on.

On stage the tics wouldn’t be there in the slightest, but off stage in the back while it wasn’t my scene it was another story. I’d had the adrenaline rush and so now the tics would come out in abundance. Being made to feel like you are destroying the play or that you’re doing something that is taboo or naughty was too much of a mental burden to live with. So, I quit acting school.

As I grew up and felt more comfortable in my skin my tics began to fade. I taught myself various coping mechanisms over the years. I maintained acting through senior school and decided to take it again as an A-level, but I had no intention of doing it professionally. For 6 years I worked in an entirely different field and then I met Helena Nicklin, who is now my co-presenter and best friend. We’d both had different journeys within the acting world but vouched to make a comeback. So, we did just that.

4. Do you tic when you are presenting?

When people with TS focus on their passions the excess energy that would otherwise go into their tics is re-diverted. In the same way those with autism have a hyper-focus, people with TS are able to absolutely soar. Their passions become their superpowers. Watch me on TV and you’ll barely notice a tic – it’s after we’ve filmed when they begin to come out because of the excitement!

5. What have you found to be the biggest challenge to be living with TS?

There’s lots of hardships, so this is a difficult one to answer. I’m going to go with stigma. Tourette syndrome is prevalent in 1% of the world’s population, yet it’s always referred to as some kind of ‘swearing disorder’. In actuality, only 10% of people have coprolalia (the act of inappropriate gestures), meaning 90% of those with TS do not swear. Regardless, we are painted with this picture and it can close so many doors for us if we let it. That’s why we need to fight for awareness and never stop shouting to be heard. As you’ll see from my answer above – TS isn’t a weakness, it’s a superpower.

6. When did you become interested in wines?

I had fought really hard to get a placement year in San Francisco when at Lancaster University. The placement department at the university told me to be realistic and to not bother going to the USA for multiple reasons (nothing to do with my TS, thankfully). But I persevered. 6,500 emails later and I had 3 job offers, I accepted one to work at a graphic design agency in San Francisco! The journey was strenuous, it took me 60 hours to get there because of a cancelled flight and delays and when I finally got off the plane I was ushered straight to the first ‘networking event’ that Lancaster University had done in about 4 years as they felt it would be fantastic for me to meet people. Turns out it was! I met Steve and Rose Smith, with whom I had so much in common. We instantly hit it off and they essentially adopted me as their nephew. They owned the only urban winery in Silicon Valley and each weekend I’d go up and get involved in every part of the process. It was fascinating. They were so good to me, taking me out to dinners and putting incredible wines from all corners of California in front of me. I fell in love with wine and have been in love with it ever since.

7. What do you find helps your tics?

Meditation, calmness, feeling in control of my life. Reducing my anxiety, breathing techniques, focusing on the positive side of things. Focusing on happiness. Just living life one day at a time and embracing the fact that I have Tourette’s and so what? If I’m not bothered by it, I don’t get as wound up about it. Don’t get me wrong, there are situations where I don’t have much control – such as an intense horror movie where I’m anxious to the nth degree, but you learn over time what to go with and what to avoid.

8. What piece of advice would you give to children and young people with tics or Tourette’s?

You are not alone. Statistics show that roughly 1% of the world has TS and related tic disorders. That’s a colossal 780 million people from all corners of the globe. When I was younger, I never thought I would achieve anything or become successful, now I look back at all those people who made me feel that way with a smile of pride. Within you, there is an incredible superpower just waiting to be unleashed. Yes, there will be hard days ahead, that’s just a part of our journey – but each and every hardship you go through will build a resilience and emotional intelligence that will set you apart from the other 99%. For every person who picks on you or looks at you weirdly, they have no idea just how much you will go on to achieve. So be brave, hold your head high and know that you are capable of INCREDIBLE things.

9. What piece of advice would you give to parents / carers or those supporting children and young people with tics or Tourette’s?

Don’t mollycoddle your child or hide them away from the world. It can be brutal out there and there will be really tough days and tears, but we need to go through that in order to strengthen and grow. If we hide away, we never learn. Equally as such, looking after a child with TS isn’t easy – make sure you give YOURSELF time to focus on YOU. Just because you’re not the one with the disability doesn’t make it any less of a strain on your own mental health. So don’t feel guilt for acknowledging that you have needs too. Finally, if you’re child finds their superpower and something they are INCREDIBLE at – foster this, help them grow. One day you’ll look back as they are achieving their wildest dreams with a smile on your face and so much pride.

10. If you had a superpower, what would it be and why?

I already have one. It’s called Tourette syndrome.

11. What’s next for you in your career?

More television, more awareness for TS. Making TS an everyday part of the conversation just as autism is. I urge anyone out there with the power to do that whether it be across publishing or television or publicity to reach out and help that cause. Together we are stronger and it will take a chorus to make change, not a solo artist.