‘I’m running for my autistic son’

Jon Barbuti and his son Dylan

Jon Barbuti is running the London Marathon for his autistic son Dylan

Yesterday was a fairly typical day for my son.

He swore at his teacher (using a particularly offensive word he just happens to like the sound of), he went over to a bigger boy in the park and licked his ice cream, then he told a woman out walking her dog that he doesn’t like dogs except when they are turned into hot dogs.

All quite amusing really – Bruce Willis language aside – and all quite typical.

Dylan is autistic, you see, and so sees the world a bit differently. He finds it a stressful place; there is too much going on so he is prone to sensory overload, he also doesn’t really get social interaction – how to act with other people, how to build and maintain friendships, how conversations work. I’m with him on that one, to be honest.

What autism needs isn’t a cure, quacks claiming gluten causes it, or jabs or whatever; what it needs is simply greater awareness. No two autistic kids are the same, but there are similarities – the differently-wired brain, the sense of unease with a world which isn’t autism friendly and is becoming less so, with brighter lights, more noise, just busier.


Jon is running the London Marathon in support of the National Autism Society

One of the best ways to think of it is with your own stress levels.

Maybe they’re at one or two out of 10 right now. If something annoying happens – the wifi drops, you spill tea on your desk – maybe it goes up one. An autistic kid starts far higher, maybe at seven out of 10 – they go into a supermarket, a toy makes an unexpected noise and they’re going up a notch to eight and you’re soon into full-on meltdown.

For Dylan, a hand dryer can cause a meltdown, or the sound of an ice cream van, or a dog barking. As a parent, what you have is a kid who can’t control themselves at this point. To anyone else watching, you have a six-year-old having a massive tantrum and parents who are weak, or flawed, or whatever.

That’s the negative side, though. Autistic kids can also have a unique sense of humour and a different take on the world.

Dylan is without doubt the funniest person I know, even if I’m the butt of his humour sometimes – like when he told the entire queue at the cinema that his dad is a bad man who sells tickets for the circus. Who knows where that one came from.

On Sunday, I’m going to be running the London Marathon in support of the National Autism Society.

They do great work raising awareness and generally supporting both people with autism and their parents. My wife and I went on one of their courses which was incredibly valuable – it’s the sort of course which used to have council funding but is one of the first things to be cut in the name of austerity.

The more awareness there is, the more kids like Dylan can just be themselves. People will realise they are different, not naughty; their unique viewpoint will be valued not stifled.

Next time you see a kid have a meltdown you might see it differently, when a random kid grabs your arm to ask you if you know what Minecraft is you might see it just as their way of trying to engage in conversation.

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