Twelve years ago I worked in the press office of the National Autistic Society. It might seem difficult to believe today, but at the time, autism was a condition that few people seemed to understand or have any experience of.
‘Oh yes - just like Dustin Hoffman in Rain Man?’ people used to say when I told them where I worked. Or sometimes: ‘I know - like the boy who draws photographically accurate images of buildings - Stephen Wiltshire, isn’t it?’
‘Well, yes…but then again, no’, was my usual answer as I went on to patiently explain that even though Hoffman’s character accurately reflected that way that people with autism found it difficult to relate to the world, it wasn’t automatically true that they are always numerical geniuses, gifted artists or human computers.
In fact, in my opinion, Rain Man distorted the public’s perception of autism in ways that weren’t entirely helpful.
I remember one mum who broke down in tears in our office because people always said of her little boy: ’But he’s got a special gift, hasn’t he? What is it? Is he good at maths?’ The sad truth was that her child was profoundly autistic. His mum would have been delighted if he just managed to look her in the eye occasionally or do up his coat, so any talk of his ’special gift’ was at best patronising and at worst ignorant.
Working with families affected by this complex and challenging condition was often a humbling experience.
Desperately worried parents who had sometimes fought for years for a diagnosis of their child’s apparent inability to interact or communicate, were usually relieved to be able to give a name and identity to the condition.
But then the real battle began as they struggled to find strategies to help their child make meaningful connections, not just with them, but with the rest of the world.
As there is no ’cure’, this battle would always, to some extent, be destined to last a lifetime.
Autism is a condition affecting the way people socialise, empathise and imagine. It is a spectrum disorder, which means that some people will be more seriously affected than others.
At one end of the autistic spectrum, many people are able to live and work happily and successfully. Indeed it’s sometimes the case that neither they nor their friends, family and colleagues even suspect that they have autism or, more likely, Asperger’s Syndrome, attributing their occasional idiosyncrasies, obsessions or compulsions to eccentricity.
At the other end of the spectrum, some people will be so badly affected and so totally unable to interact that they will probably never be able to live independently.
Jane Asher was one of the patrons of the National Autistic Society when I worked there and I remember accompanying her to the opening of the Society’s new state-of-the-art residential centre for young, profoundly autistic adults in Cambridgeshire.
She was compassionate, gentle and attentive, and I often think of the conversation she had with one of the parents of the new residents.
“It’s so hard,” the dad said. “When they are children, you can cope, but when they are in their twenties and stronger than you, that’s when you need a place like this.”
A small child having a violent tantrum because they are terrified and locked out of the world is one thing, a young man behaving in the same way and for the same reasons is something very different.
These days autism is much more recognised.
Sadly, I know several families where children have been diagnosed with an autistic spectrum disorder, but I hesitate to say that it is becoming more common because I don’t think that’s actually the case. Looking back at my first primary school, I remember one particularly disruptive and troubled boy in my class who was almost certainly autistic, although that was not a word teachers or parents ever used.
This weekend I was reminded of the two years I spent at the National Autistic Society and of the absolute commitment and dedication of parents with autistic children when we visited a friend in London who was holding a yard sale in her front garden to help fund specialised treatment in America for her small son.
She and her husband have already transformed a room in their home into a ‘therapy’ zone and next week they, and a team of helpers, are flying to Boston to undertake a week of training to help them to help six-year-old Sam.
He is already responding well to intensive - and intensely sociable sessions involving lots of laughing and tickling! - designed to engage him and draw him out of his locked world. The training trip to America will help them all to develop and extend their skills.
On Sunday, my friend’s front yard was filled with relatives, pals and neighbours all pulling together to make this project a success.
I’m still a bit amazed at what they managed to squash into a such a small space.
Delicious cupcakes - far better than the ones at swanky London bakeries - were on sale, Christmas decorations were available, boxes overflowed with bargain books, mountains of china and bric-a-brac toppled precariously on a rickety trestle table and a caricaturist was scribbling instant sketches in a corner.
Under duress, I forced my husband sit for him and the result - making him look like a youthful cross between Elvis Costello and Charlie Brooker with a hint of Joe Pasquale thrown in - is now attached to a kitchen cupboard.
About half an hour into the event, there was an orderly queue at the gate as passers by, intrigued by all the laughter - and the sight of those cakes - waited to get in.
Despite the fact that the heavens opened at 3pm, nothing could dampen the enthusiasm on display.
And if what we saw on Sunday afternoon was just a fraction of the group’s determination for this project to succeed, then Sam’s future must surely be bright indeed.
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