Autism as an operating system

Alison Pilling, who has an autistic son, explains just how different his system is. It not better or worse than others, it’s just different.

Seeing the world through others’ eyes

It feels a bit odd baring my soul at Bettakultcha.

This was my 6th or 7th outing on stage and I don’t know if you ever stop feeling nervous. I always get to slide four and wonder why my mouth is drier than the day after a heavy, particularly dehydrating night out. So for every Bettakultcha I’m nervous, but my usual approach is to have a laugh, view day-to-day stuff from left field, find that one-liner to keep people smiling.

But when you’re talking about your child, it’s not so easy.

My son Matthew is autistic.

Autism Pic 1The health visitor mentioned that it’d be worth a check-up when at the age of two, maybe two and a half, he had no spoken language. It took a few months to work our way through the checks at St James hospital and the double checks and the questions and all that but that was the diagnosis.

I spent a few weeks in denial. The diagnosis for autism is not a straightforward one. You don’t do a blood test and there you are – positive or negative. It’s more a balance of probabilities thing. So I went to Waterstone’s, trawled the shelves and bought a book about autism and the symptoms. And I remember sitting at home with quiet tears streaming down my face because I’d read a perfect description of Matthew at play – self-absorbed, spending hours lining up toy trains with no interest at all in creating a make believe story around it, the trains themselves being all the fascination he needed.

The years from Matthew being a toddler until later in his Primary years are a blur because I stopped having an individual identity, no chance to meet friends and have adult conversation, I was just the ‘mother of the crazy child’.
Sixteen years later, the world is very different.

Matthew had great support at nursery school (looking back we might have been some of the first parents to extract pre-school support from Leeds City Council – not sure what trick we pulled there). Primary school had a speech and language unit and dinner ladies prepared to chase Matthew down the field when he made a bid for freedom. And his high school, Roundhay School, is rightly praised because their ability to support children with special needs in a mainstream school is just about the best set-up you’ll find for miles around.

Autism Pic 2We found Shannon, the outreach worker, who always has time for one more child. And at the Bowling Club Shannon started we found other parents facing the same challenges. We found the gymnastics club in Swinnow with coaches happy and willing to give up time and effort to teach our children co-ordination skills and following instruction. We found Verve, the club at Opera North, to bring out creativity and confidence. There are lots of other services in Leeds that I know a bit about and probably many others about which I know nothing.
And different autistic children and in time autistic adults need different things.

For Matthew gymnastics has been a revelation. He is an accomplished gymnast and has found that he has some skill in coaching younger children with empathy and a genuine desire to see them both enjoy it and improve.

He still loves trains and I accept (very ungraciously) the times when he asks if I can accompany him as we sit on some railway station and film trains bearing the brand of the latest franchisee, so that he can generate high numbers of hits for his YouTube channel.

My Bettakultcha story asked whether Autism was merely the same world viewed through a different operating system. I think that’s true and I get tired of it being described as a disability – about what autists can’t do – without seeing the other side of that coin.

Autism affects around 1% of the population and I read the other day that full time employment amongst adult autists in the UK is 15%. I can’t help thinking that the world is missing out on a whole load of skills and sensitivity, because the 99% are programmed to see the world through different eyes.

For more on what’s available locally, try
And nationally – the National Autistic Society
Want to talk more? Tweet me @anarchicali

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