From autism awareness to the need for understanding

I’ve a son called Joshua.

Joshua is 4 years old and diagnosed as being on the autism spectrum. He has precious little in the way of language. He struggles to make sense of the world around him. The sights, sounds,  smells, tastes, touches, colours – he has no way of filtering it all.

He has difficulty with social communication and interaction. He can’t decipher facial expressions, tone of voice, body language. If he spills a drop of juice on his clothing, he’ll strip naked, regardless of where he is. Sometimes, the sensory overload is so unbearable that it causes him real anxiety and distress.

When it all gets too much, the shit doesn’t half hit the fan. The other night, I spent an hour laid on cold laminate flooring in the hallway with him, trying to restore calm after a meltdown that saw him trash the living room in seconds and land a couple of impressive right hooks on me.

“Your child is a fucking brat” 

We’re used to it by now. We understand it. But when it happens in public, that’s when the size of the shift needed to ensure autistic people are accepted, respected, included and supported  really hits home. Put simply, leaving the house can be a hell of an ordeal.

It’s the kind of behaviour that leads to disapproving scowls in the swimming pool; tutting and raised eyebrows in restaurants; sniggering at the school gate.

My wife’s been told to her face that “your child is a fucking brat” while he was mid-meltdown over the colour of a balloon in a shop that had thrown his world out of kilter. A woman in the supermarket has helpfully told me: “You can get grants for kids like him.” 

Even some family members want nothing to do with him.

His first nursery effectively told us they didn’t want him there. He doesn’t get invited to birthday parties. He can often be found playing alone with a tin opener.

From awareness to understanding

I mention all this as today, April 2nd, is World Autism Awareness Day and because there’s a brilliant new awareness-raising campaign under way to help people better understand those on the spectrum.

There’s a real need for it, too. According to the National Autistic Society, 28% of autistic people have been asked to leave a public space because of behaviour associated with their autism. Nearly 80% of autistic people and 70% of parents feel socially isolated. 50% of autistic people and their families sometimes don’t go out because they’re worried about how people will react to them. 

In a 2015 survey, 99.5% of people said they had heard of autism. So awareness has arrived – what’s needed now is understanding.

Understanding that, in Joshua’s individual case, he’s a beautiful child with a beautifully different mind. He can have us in fits of laughter. His meticulous attention to detail will, I’ve no doubt, serve him well in the world of work one day (seek out BBC2’s inspirational Employable Me to discover how those with neurological conditions can bring immense value to employers prepared to not judge a book solely by its cover).

Understanding that it’s a spectrum. An invisible and lifelong disability. Not everyone with autism is Rain Man. The way it manifests itself varies dramatically. If you’ve met one person with autism, you’ve met one person with autism.

So the next time you see a child seemingly going crackers in the supermarket, do us a favour. Stop and think for a second before judging. Maybe they’re not a brat. Maybe it’s not a standard tantrum over a chocolate bar. Maybe there’s just too much going on for them to process all at once.

And maybe they and their parents are in a daily battle that, with some understanding from the world, it’ll be that bit easier to fight.