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 assessor 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.
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.
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!
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.
