father and son photo in the spectrum design, next to quote and running shoe icon

With spring in sight, we caught up with Will Coetzer, Team Autism runner, yoga enthusiast, and father to Austin, who is autistic.

Will is running the London Marathon to raise money for our charity. We chatted to him more about his marathon journey, challenging society’s perceptions of autism, and his experience of being the parent of an autistic child.

What inspired you to run the London Marathon with Team Autism?

My son was diagnosed as autistic at the age of three. That was my first official exposure to autism, so that’s my inspiration – as well as trying to figure it all out, to be a better parent, and learning about autism and realising just how common it is.

That’s all inspired me to not only spread the word about autism but to also try and raise a lot of money for future awareness. It’s the 40th London Marathon, I’m turning 40, and I’m trying to run it in 4.0 minutes per kilometre, which is two hours 48 minutes, and I’m trying to raise 40k.

It’s the 40th London Marathon, I’m turning 40, and I’m trying to run it in 4.0 minutes per kilometre, which is two hours 48 minutes, and I’m trying to raise 40k.

I have run a few half marathons. I used to be a competitive runner as a kid, although that’s about 20 years ago now. Having two small children, 17 months apart, drove me to run again – mainly running away!

Do you know anyone else with a connection to autism?

I’ve become more aware of autism since my son’s diagnosis.

Since I’ve started fundraising for the National Autistic Society, I’ve reached out to a lot of colleagues and professional contacts. Many of them have told me how much the cause resonates with them. Two close professional connections who are friends have told me they have autistic children the same age as my child, and I didn’t even know. It’s incredible just how common it is, and I suppose more and more people are being diagnosed with it – so maybe the rate has never increased, but our ability and awareness around diagnosis.

How did Austin come to be diagnosed?

There were two specific areas we noted. Firstly, there was a notable “social disconnect” emerging, which included a lack of eye contact and an unwillingness to play with his peers. Secondly, and perhaps most apparent with hindsight, there was a definite low body tone (or “floppiness”) we noticed quite early. He only started walking unaided at around 17 months, and at almost two and a half years old, he still struggled to climb up the stairs on the slide at the park or sit upright and come down it. It was at this point we thought, ‘hang on a sec’, and just knew we had to have it checked out.

We then had Austin independently assessed. I think they said there might have been a ‘global delay’, but also thought all his indicators were within the averages, so they couldn’t be specific because he was so young. They recommended assessment in a year. So we did that, and it got confirmed by a paediatrician.

What are some of the challenges you face as the parent of an autistic child?

I’m projecting my family’s experience (which makes either easy to relate to or impossible to relate to!) - I try and visualise or understand autism being like a fingerprint. Everyone has a version yet each is unique.

I try and visualise or understand autism being like a fingerprint. Everyone has a version yet each is unique.

For me, the biggest challenge is managing my expectations and frustrations based on how someone like me, a neurotypical person, assumes things are. What’s normal for me is not normal for another person. That seems obvious at face value, but it’s not that obvious in a neurotypical setting, because there are social ‘averages’ and things that everyone would just obviously do, which an autistic kid just doesn’t do. For me, that is quite tricky, since we all operate on autopilot most of the time, so there’s a real awareness, education and behavioural change required. But it’s a massive investment.

For the day to day things, the list is endless. For instance, potty training took almost four months to master. Cognitively, Austin is phenomenal. He’s pretty much taught himself how to read, albeit basic words. At the age of two, an assesser estimated that his vocabulary was nearly 200 words, for example. But due to motor skill issues, he finds articulating himself difficult.. So he’s above his age range in that sense, but his motor skills are severely behind. That affects speech, balance and confidence. With the help of occupational therapy and physiotherapy, he’s making enormous strides, but he’s still behind. Things like getting dressed or holding a toothbrush or a fork, are significant challenges. We have a three-year-old daughter who is neurotypical, so we can see the differences.

I always feel guilty calling these things ‘challenges’, but it is what it is. It’s a challenge for me in my world. Someone said to me a few years ago, ‘nothing’s a problem with kids if there’s no time pressure.’ I think this is amplified with an autistic child, because certain things just take so long such as getting ready to leave the house.

I always feel guilty calling these things ‘challenges’, but it's a challenge for me in my world.

Austin also has specific interests, so when he’s focusing on something (like a TV show), you can’t get him away from it! That said, any mention of the word ‘chocolate’ or ‘snack’ snaps him out of it pretty instantly. While that’s a light hearted example, it also taught us that he clocks everything we say, but just doesn’t respond in a way we expect a child to. So in his world, it’s probably not a challenge, but in my world, it is, because I need to go to work or want an answer!

All kids have meltdowns, and Austin has surprisingly few, but when he has them, he really has them. He’s verbal, but because of his motor skills delay, he can sometimes struggle to string sentences together, which can cause him frustration. He also engages in some ‘stimming’ behaviour – for example, flapping his hands, but not that often. It actually usually happens when he’s excited. For example, when he watches the washing machine in a spin or hears a song he loves.

If you could destroy one myth about autism, what would it be?

I asked my wife this question, and she said, ‘not every autistic person is like Rain Man you know!.’ Maybe that’s a global analogy based on what we’ve been fed, but it makes it quite powerful if you think about it. If that’s the narrative everyone has been fed over the last 20 years, it seems like that myth has to be debunked.

A big myth for me is that autism is uncommon. There are substantially more people on the spectrum than you think, all around you, almost certainly in your workplace! The myth is ‘it doesn’t touch me. It isn’t connected to me.’ It is totally connected. You just don’t know about it.

A big myth for me is that autism is uncommon.

Why do you think raising awareness of autism is so important?

Autism is, in some ways, as ‘normal’ as anything out there. Even in the building you work, when you go on public transport, there are many people around you who are on the spectrum. I’d encourage people to just reflect on that. That’s why trying to understand more about autism and embracing neurodiversity is so important.

How do you think the general public can better support autistic people?

Just try to understand it more and make an effort to learn about autism – for your own good as well. For me, having more patience would help, especially with my son, and understanding that his method of learning or thinking is different from mine. There are different ways to get to the same destination.

Any tips for fellow fundraisers?

On the running front, for me, getting a coach has been invaluable, and has undoubtedly saved me from myself. I would recommend TrainingPeaks, which is a website where you can find coaches from all over the world for cheap rates. I’m also (almost) teetotal this year, and have a specific nutrition plan. That might be a push for most people, but I am trying to run a 2h 48 min race while running a company, travelling, etc.. so I need to “buy” time by being healthy. Starting was hard, but two months in I feel amazing!

I started getting up an hour earlier every day, so I have time to work on my fundraising. I’d also really recommend doing yoga. I now do more yoga than running actually – it helps on all fronts!!

In terms of fundraising, I realise I’m trying to raise a substantial amount - £40k. So I have to think big.

What helped me was making lists of everyone I knew – friends, colleagues etc. Be smart about who you contact, as it can be incredibly time-consuming to send personalised messages to everyone. And have a system! Keep a real-time spreadsheet so that you can mail everyone at the same time! Also, don’t leave home without a diary... you will get inspirational thoughts about who to ask for money in the most unexpected places… and be ready. I even had my business cards printed with a London Marathon message, including my donations link, I’ve been liberally handing these out. People love chatting about it (well, I think so anyway. Haha).

Just have fun with it – the energy and personality will show. Be cheeky. As a successful fundraiser told me – embarrass people into giving you money!

Just have fun with it - the energy and personality will show.

I have aimed to “engineer” having an hour or so a day to work on fundraising - easy to say but not so easy to do! But taking these micro-steps has had a compound effect. I realise that might not suit everyone, but it’s worked for me. I think putting in the time would be my main tip.

You can keep track of Will’s London Marathon adventure and help him reach his fundraising goal here.

World Autism Awareness Week is on its way

If like Will, you’re up for a challenge, why not follow in his footsteps and take part in one of our fundraising events for World Autism Awareness Week?

Find out more