World Autism Day – Breaking Butterfly Jars

I hope World Autism Day goes some way to changing the perceptions society has about people with autism.  People like Mark…

Mark is in his late thirties.  Part-anarchist, part-musician, part-wannabe politician and, given the chance, he’d be a very good MP.

Mark is highly intelligent, highly articulate and very, very  quick-witted.  A complete snob, he would snarl at the few Teesside phrases or expressions that still crept into my manner of speech and, as he generally wore a waistcoat accompanied by an antique pocket-watch, he also felt that my style of dress was common; however neatly my shirt was tucked into my jeans.

Long before I met Mark, I knew a little boy called Ross.  Ross lived a very chaotic lifestyle with no order or routine whatsoever.  Some days he would eat, some days he wouldn’t.  Some nights he would sleep, most nights he wouldn’t.  Ross used to self-harm, picking huge bloody welts into his flesh.  He had no sense of danger at all and his diet included normal food, raw food, leftover food, soil, stones and much, much more. 

Ross had outbursts that he couldn’t control, he would often harm other children, or himself, which made social situations difficult.  Difficult, but not impossible.  Ross needed constant care and supervision.  His parents were exhausted from not sleeping, managing his behaviour and worrying about his future.  Ross was, most likely, blissfully unaware of the outside world, his contentment in life stemmed mainly from having his most basic needs met; eat, drink and play.

Ross loved swimming, he would stay in the water for hours.  He loved tactile toys and scrunching up bits of paper – crisp packets were like little crunchy bits of heaven!  He loved the space and freedom of being outside in the park.

You couldn’t meet two people more different than Mark and Ross, but, while they were both living completely different lives, they shared one thing in common – Autism.

Ever since I started working with disabled people as a teenager I’ve been fascinated by Autism.  I don’t mean in the voyeuristic sense that some people are fascinated by it, I mean that I’m fascinated by the challenge of enabling people with Autism to enjoy the same opportunities as others when the breadth of this development disability can be as wide as the enormous chasm that existed between these two very different people.

I enjoyed a brief stint at the National Autistic Society in the early 2000’s and had never seen the whole of the autistic spectrum as vividly as I did at that time.  One day, I could be in a far-flung London borough advising families or schools how to support their kids with a range of issues; sleeping, diet and toileting were generally some of the most common causes for concern.  Then, the next day, I could be in the House of Commons with a group of people with autism, like Mark, who had formed their own parliamentary group to campaign for better rights and services for people with autistic spectrum disorders.

Autism, in my view, is one of the most fascinating and often misunderstood of all disabilities.  Even when I started working at Out & About ten years ago, there were only a handful of kids with autism being supported by the charity, whereas now they account for about 50% of all children we include in leisure activities.

Anyway, why Autism?  Why today?  Well, today is World Autism Awareness Day and I am reminded of the many people with Autism that I’ve met through my work and I hope that having the spotlight on Autism for the day will create better awareness of their needs, understanding and acceptance.

But I’m also reminded of something Mark said to me once when he was describing that some days he forgets about his diagnosis and carries on as normal (whatever “normal” is!) until he finds himself in social situations and freezes.  He said that some days he feels like a butterfly trapped in a jar, he can see and hear people all around him, but he can’t break through the glass.

I hope days like World Autism Day (today) help to break a lot of jars.

NB: I haven’t used Mark and Ross’ real names.

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