1 Living with neurodivergent athletes: family insights of young athletes

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TONY HOLNESS

I feel like I’m one of the most blessed and proud people in the world. I’ve been given a gift of my son. Two years ago, I gave up my career in IT and banking to become a triathlon coach. And I’m proud because my son, Sam, became the first openly autistic triathlete to participate in the 70.3 world championships in Utah, St. George, last year.

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Now, let’s understand this. I don’t know how many of you know about autism, but the first thing I say is there are people in this room who either are on the spectrum, have family members on the spectrum, or are neurodiverse, i.e., dyslexia, dyspraxia, ADHD, and so on. So autism is actually an intellectual disability.

But I try not to call it a disability. I call it-- and I call people who have autism people of determination. Because if somebody who has autism can complete a triathlon, god, they have to be better than me and more determined than me. So autism is a neurological disability. I’ll use the term ‘disability’ because it’s a lot easier.

It affects the way you deal with social interactions. It has to do with your language. It has to do with meeting new people and dealing with new situations. It also has physical and potentially, for some people, mental implications as well. When we learned that Sam had autism, so my wife and myself, we were scared.

We didn’t know what it was. We didn’t know how to deal with it. And then we met the experts. And there’s probably some ed psychologists in here. Yeah? We met teachers and educationalists, and we had a discussion with them about Sam.

And because Sam wasn’t speaking at the time of the diagnosis, they said to us, set low expectations for Sam. Do not expect him to do well academically. Do not expect him to do well in his day-to-day life. Set low expectations.

And we said, no, we’re not going to do that. And we weren’t going to do it for lots of reasons. Sam is the grandson of first-generation Windrush folk that came here, who were highly entrepreneurial and risk takers. And we decided we’re not going to take that.

We’re going to try. We’re going to change the rules. We’re going to change the way that autism is perceived. And that’s when he was four years old.

But one of the strangest things is that, although he couldn’t talk at 3, he was swimming. Really strange that he could swim, but he wasn’t talking. But he loved the water. He was a water baby. He just absolutely loved water. And he still loves it today.

So we were scared. We were worried. And we did all the things-- speech language therapists, ed psychologists. We did everything-- local authority, school placings, and so on. And we had lots of challenges, lots and lots of challenges.

However, the results are quite phenomenal. Sam did his level 3 BTEC in IT, got a place at university, and did a sports science degree where he got a 2:1. Yeah? Got an award for his work and his achievements. His autism is quite fascinating about the way it works.

So I remember a story of one day I’m at home, and Sam phones me and says, Dad, I’m on my way to university. And the trains are delayed. There are no trains. I’m going to miss my lecture.

This guy is never late for a lecture, ever. Never been late. And it’s the first time I learned about how he problem-solves. So I said to him, you could get an Uber. Nah. It took three buses, which would have taken over an hour to get there, and he’d be late.

He had his rucksack on his back, with his laptop and his books. He ran 3 miles to get to his lecture. And that’s indicative of Sam’s personality. He’s never late. He wants to win.

He doesn’t like not finishing. One of his favourite movies is Run Fatboy Run. I think he was talking about me. But that’s an aside. Now, why sport?

Sam started doing judo, trampolining, swimming. We just tried him at everything, just so he could get life experiences and learn things. And when he was doing judo, we learnt that he liked the rigour of judo. A yellow belt. All the way through, you got belts the better you got.

He’s now a brown belt in judo. But when he started, he had to deal with some of the most unbelievable issues-- physical contact. And you ask yourself a question, why would parents of an autistic child that hates physical contact send him to judo? But we did, and it was amazing.

His sensei called him Super Sam. And he called him Super Sam because he wasn’t afraid, even as a brown belt, to fight a second or third dan black belt. Recently, we had an article written about Sam. And I was just playing around with a journalist, and we came up that Sam is the Ronaldo of triathlon.

No, he’s not good at football. He’s not really good at team sports, which is another thing about people who are on the spectrum. Not all of them are good at team sports. But the reason we use that phrase is because Sam is the first one at training and the last one off. He’s dedicated and committed.

So we learned from sports about Sam, the way he thinks, the way he problem-solves. It was really very, very important. And we learnt that we had to exist in his world. We had to learn how he was thinking for us to get him to maximise on his life opportunities.

Some of the questions we get is, why are we doing this? Why would you take an autistic adult, who’s now 29, and put him into triathlons? And I’l tell you a bit about a triathlon soon. But why would we do this?

And then as we researched, the answer became obvious. And I don’t know how many of you know this. The life expectancy for an adult with autism in the UK is 54 years. And the reason for that is because their health-related issues, which is why they pass on. Yeah? Diets, diabetes, heart attacks, and so on.

So we thought, if we get him healthy, he’ll live a longer and more fulfilling life. That was the first thing. Second, recent statistics. Graduates from university with autism have the lowest employment rate. Only 7% of graduates with autism get jobs, full-time jobs.

It’s unbelievable. It’s the lowest for anyone with a disability. And we thought, yeah, we’ll send him to university, challenge everything. We went. He should go. That’s how we actually thought.

And then, as I told you before, he got his 2:1. And that was a big eye opener for him. Because he’d go to university, and the first year he was spending it observing. Year two, he discovered the bop. Yeah? He discovered the disco on Friday nights.

With the loud noises and the crowds. Everything that was supposed to be so sensory for him. He shouldn’t be able to do it, but he did it.

And we learned that if he wanted to do something bad enough, and he wanted it and needed it, he could adapt to it. So our challenge became fairly simple. Sam has some innate skills.

He likes doing repetitive tasks. He likes mastery. And we thought, how can we take those innate skills and convert them into an area where he could have a long and successful and happy life? And that’s what we’ve done with triathlons.

So if there are athletes in the crowd, you know some of the things that athletes have to do is that they have to be committed. They need to be resilient. They need to be hardworking. And those are all the traits that Sam has.

So that’s why we do this. We wanted to have a long life. I think every parent of a child wants to actually have your child actually do that. That’s why we do what we actually do.

But I’m not going to tell you it’s been easy. It’s been challenging. You may have seen me running around some of these big malls or supermarkets, running after a child and throwing him over my shoulder while he was having a tantrum.

And we still have our little fights every now and again and can’t help it, because I wind him up. Yeah? You can’t coach him and be a dad and not get into that situation. I want him to be the best he actually can.

So here we are as parents. Autistic child, all sensory issues. We’re down in Portugal, in Cascais. If you’ve been to Cascais, absolutely beautiful. Wonderful place. About 20 kilometres outside of Lisbon.

And he’s doing his first half Ironman race. Now, half Ironman is swimming 1.9 kilometres, cycling 90 kilometres, and running a half marathon back-to-back. OK? And he’s swimming in the sea.

So we’re really the sort of parents that say, put on a wetsuit, Sam, and off you go. Yeah? And he finished that race. Now, one of the other things associated with autism is GI issues. Sam has IBS.

But with a lot of runners as well out there, when you do distance running, you get gut issues. It’s a quite normal thing. But he had it, plus. So we see him. He comes out of the water. He looks fine.

He comes back from the cycle, and his gut’s bloated, like that. He starts running, and he’s bent over like that, double. And Mum says to me, stop this now. And I went, nah. Let’s see how good he is and what he can actually achieve.

And he kept going. Now, he went to the portacabin about six times. Yeah? But he finished. Then we sat down as a family, and we thought, OK, we know the job prospects aren’t good for people who are on the spectrum with a degree. We know this makes you healthier, we think, except for the gut issues.

And we sat down at a restaurant. He was having his deep-fried calamari with chips, which he loves. Yeah? And I was having fruits de mer. And it was absolutely beautiful overlooking the sea in Cascais.

We had a discussion, and we said, Sam, do you want to keep doing triathlons, or would you prefer to get another job? And his answer was, definitely triathlons, Dad.

And then we made another decision. Is this a bucket list, or can he become a professional? Can he become an elite triathlete? And then I looked at the traits of leading athletes and Sam’s traits. It’s quite fascinating. Determined, relentless, committed, high pain threshold.

I could go through a whole list of them. And I went tick, tick, tick, tick, tick. He’s got all of these things. And all we have to do is challenge that energy and knowledge in the right direction. So I gave up my job. I gave up my career and became a coach.

I trained. Never been a coach in my life. But what I can tell you, it’s the most rewarding thing I have ever done, and I will never go back to the corporate world. Yeah? I’ve been a banker. I’ve been there. I’m not going to do that ever again.

Because this is our lives now. But I’m not only just a coach, I’m a taxi driver. I’m the bike mechanic. I book travel. I manage his nutrition.

He just gets up every morning, gets on his bike, goes for a run, goes to the pool and swim. I wish I had parents like me, right?

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So I’m going to finish with, what next? Because ‘what next’ is important. So at the end of this month, Sam will do his first full Ironman race in Frankfurt, in the European championships. OK? Again, he will be the first openly autistic triathlete to race there.

In October this year, we’re going to Hawaii. We’re going to Kona. We’re going to participate in the world triathlon championships. Again, to be the first. So adversity, glass ceilings, all sorts of things here.

The best bit about what we’re doing is how it motivates people, how it inspires others. I wake up every morning, and I look at my DM messages. And I have a parent in South Africa or Canada or the US or Jamaica saying to me, you have inspired me. You’ve given me hope for my child who’s autistic, that they can achieve something in life, that if you try and you work hard enough, good things can happen. Dreams can come true.

The last thing I want to talk about is talent spotting. It doesn’t matter if you’re in sport or in industry. If we didn’t do what we did as parents, Sam’s skills and ability would have been missed.

So to all the parents here or children or future parents, invest in your child. And I will tell you something else. It is the most rewarding thing you can ever do, to see your child cross that finishing line.

And it doesn’t matter if it’s sport. Doesn’t matter if it’s Oxford or Cambridge or Spelman or Harvard in the US. There is nothing like that. Thank you.

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