The Ragged Road to Adult Autism Research

I'm one of the relatively lucky ones - I'm articulate, I managed to work for about twenty-six years and became a successful published author; but the hard and terrible lesson I learnt along the way is that there is a crude and xenophobic core of creatures in our society who care nothing for others and turn on anyone perceived to be different.

History is seldom neat. More often it's as ragged as Amy Pond oft accused the eleventh Doctor of being; so please excuse this raft of quotes regarding Autistica's new Research Centre for Ageing with Autism at Newcastle University as the inevitable by-product of history's march:

"In Vietnam we spent five million dollars a head to kill the citizens of that country, and our profit was the undying hatred of everyone there, both north and south, and the loathing of the civilised world. We've made our mistakes, now let's profit from them.

"For far less than one thousandth of the cost of killing a man, and making his friends our enemies, we can save a life and make the man our friend. Two hundred bucks a head, that's what this operation costs."

(Commando Raid. Harry Harrison. 1970)

That quote was fiction. This next one is not.

"You know, I'd have been willing to work with you, to have been some sort of autism ambassador.

"But now, after what you've done, after the way you've treated me, you can whistle for it."

How do I know this quote was real? I said it.

The organisation to whom I was quietly and bitterly talking, the last one for which I worked, most certainly earned my absolute and utter undying hatred. I'd also been becoming aware that far less appeared to be being done for adults with autism as opposed to children on the spectrum [see (Lette) Kathy Come Home] and that many of those grown-ups, often therefore unable to contribute to society, would (according to my arithmetic from that article) need at least three million pounds worth of support during their lifetimes.

As there are about 500,000 adults with autism in the UK, the total bill for our upkeep may be about £150 billion. And counting.

I'm not good at sums, but Ruper Isaacson, the father of an autistic son, just mentioned in The Mail on Sunday of 22nd June that:

"...if almost every group of people that predates industrial society has a way of integrating neurologically different individuals into the core of their culture, then why haven't we?

"We had better answer these questions. If the current figures for autism are true - one child in 88 over the age of eight, and one boy in 56 - then if you tried to institutionalise all these people, the economy would implode."

So institutionalisation won't work, but it's not easy to unlock adult Autists' talents. I should know. As I recently mentioned, I have my limitations, could never have worked full-time in journalism and took a decade or so to reach my peak. But being literally tortured by selfish little bigots while I struggled at work? No, that was not okay.

Although I'd still like to see such bigots lowered into molten lava an inch or so at a time, it was with a cautious sense of hope that I heard about Autistica's research centre.

Autistica's figures (added up and boiled down better than mine, most likely) still front up the same hard facts:

1% of the UK population (600,000) has autism. This will certainly go up, many remain undiagnosed.

Only 60 pence per adult per year is spent on research into adults with autism. If I've got my sums right, that means only £300,000 is spent on us per annum.

Whereas...

Autism is estimated to cost the UK economy £32 billion every year, largely in the form of adult care costs and lost earnings.

At the moment, only 15% of adults with autism are in full-time work and a quarter of us cannot speak.

I'm one of the relatively lucky ones - I'm articulate, I managed to work for about twenty-six years and became a successful published author; but the hard and terrible lesson I learnt along the way is that there is a crude and xenophobic core of creatures in our society who care nothing for others and turn on anyone perceived to be different.

That brave new world which would place us far from such ugly attitudes and provide platforms for other potential Newtons, Jeffersons, Lawrences and Einsteins (all probable Aspergers) may seem as remote as a sunlit city on the edge of forever, but if that city's name is Newcastle I hope the research to be undertaken there will benefit that jobless 85% and mute quarter of adult Autists who, today, are not as lucky as they should be.

James Christie is the author of Dear Miss Landau. He was diagnosed with Asperger Syndrome, a mild form of autism, at the age of 37 in 2002. He lives in the Scottish Borders.

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