You've got a year to get it right next time

Journalist Lisa Cherry-Downes, currently working on the Internet at the Derby Evening Telegraph, took a long, hard look at the way the media reported Autism Awareness Week. This is what she found.

One awareness week ends as another begins. They have become a ubiquitous feature of news gathering.

Last week it was the turn of Autism Awareness Week - always a good topic for newspapers looking for human interest stories.

As a journalist and the mother of an autistic child, I naturally take an interest in how the press deals with what is, even for me, an often unfathomable condition.

It is the often bizarre features of autism which make it, I feel, such an attractive subject for journalists who are forever on the lookout for stories about the quirkier side of life with which to tantalise their readers.

Much of the interest was originally sparked by Dustin Hoffman's portrayal of an autistic savant in the film Rain Man.

This film is a commendable portrayal of the condition, undoubtedly helped by the fact that the makers and Hoffman sought the advice of one of the leading autism specialists in the US, Bernard Rimland, and his savant son, Mark.

I watched it before I had an autistic son. But when I watched it a second time with a degree of inside knowledge, I realised how much significance I had missed in how the director used certain shots and camera angles to put across how the world must seem to an autistic person.

Rain Man certainly helped to bring autism to an audience of millions, but because many aspects of the condition were dealt with in such a subtle manner, which were probably missed by many, it did leave a rather indelible stereotypical mark.

Now the aspect of autism that people most remember, understandably so, is the savant phenomenon.

But these extraordinary skills are found in only ten per cent of the autistic population and only a small proportion of those can go on to use their strange talents for some useful purpose in life.

While it was refreshing to see that this was mentioned in some of the coverage last week, after five years of reading about autism in the press, I find I am growing increasingly tired of the way it is covered and now frequently avoid reading anything.

This year's theme, laudably, was the discrepancies in educational support that autistic children face across the country.

I wholeheartedly support any attempts to ensure that autistic people get what they need in their education - starting with an early diagnosis.

My son was fortunate enough to be spotted early. It breaks my heart when I receive phone calls from parents whose child has only just been diagnosed at the age of 10 or 11 after having a truly terrible time at school because of ignorance or lack of willingness on the part of so-called professionals to listen to parental concerns and address the obvious problems a child may be having.

But is an awareness week going to change anything? Personally, I doubt it.

It may be cynical of me, but authorities who are good at catering for autistic children, are going to be only too pleased to display in a regional newspaper how well they are doing in providing specialist units and substantial help in mainstream schools.

What about those who are not?

I cannot say to have seen every regional newspaper last week but I would be surprised if any of those who bothered to recognise Autism Awareness Week took a truly critical approach to the issue of educational provision.

At the end of the day, it is not journalists or newspapers which are going to change the quantity and quality of educational provision, but the hard work of unsung heroes in local autistic societies who will.

So if the press is not going to actually help change anything, what is the point of such an awareness week?

Answer: To make people aware of autism?

I think many people are already aware of autism - partly because of Rain Man, partly through the effectiveness of the marketing department of the National Autistic Society and a human fascination for the extraordinary.

I also believe there is an appetite for readers to hear about other people's tales of woe so that they can cheer themselves up with a feeling of 'there but for the grace of God go I'.

Unfortunately, too often, it is this side of autism that newspaper readers get.

For most journalists, under pressure to turn an idea round quickly, the way to tackle the subject is to feature a couple of nice pictures of autistic children (all the better that they don't actually look disabled), throw in a bit of statistical information and a few tales of how hard life is from parents X and Y.

The worse alternative to this is the omnipresent fund-raising tale (featuring smiley family portrait) to raise £X to send little Jonathon/Callum/Simon to swim with dolphins/have some ground-breaking 'miraculous' new treatment/visit therapy centre on the other side of world.

At one time all these stories did was make me feel like a bad mother.

But I realise now that caring for a new baby and a demanding four-year-old, who was seeing four different specialists, on top of trying to hold together a small business and fight a disability benefits tribunal, I had every reason to feel that it was a big enough struggle just to muddle through the day without trying to run around organising jumble sales on top.

As for my tale of woe, like every parent who is told their child has a life-long incurable condition, I went through a period of bereavement.

I realise that I am not in the same boat as the parents of a child who spends all day screaming at full pitch, will eat only chips and one flavour of yoghurt, and is still in nappies at the age of eight.

And sometimes, when my son has driven my patience to the limit or I have another lengthy benefits form to fill out, I do wish life had been different.

But I cannot imagine life with a 'normal' son any more and although coping with the initial loss was hard, I have learned to appreciate my son in a different way and believe that his differences have actually enriched my life by making me a more empathetic person and more tolerant of the weaknesses in others.

I am sure I am not the only parent of an autistic child to feel this way.

So next time an autism story crops up, it would be refreshing to see it covered in a more imaginative way, and one way would be to get the story from the horse's mouth.

Last year when I was studying for a university course, I did some research on how autistic people use the Internet and came across something which in many ways changed my view of this, to coin an over-used newspaper expression (which, I am the first to admit, I have used myself) 'devastating disability'.

The Internet has thrown up a new community of autistic people who are tired of others wanting to cure them and just want to be accepted the way they are. Some do not see themselves as disabled in the true sense of the word - just different.

Autism for them is a way of being - rather like a person's sexual persuasion. It it because of this that they like being known as autistic people rather than the politically correct 'a person with autism'. Would we describe a gay person as 'a person with homosexuality'? I think not.

Some of this new political breed of autistic person is also rather fed up of the way they are described by professionals and are challenging conventional wisdom about what autism actually is.

For instance, psychologists routinely describe autistic people as having little empathy or an undeveloped sense of humour. Some autistic people not only find these descriptions incorrect but also deeply insulting.

I certainly don't feel that my son lacks empathy - in fact I think he has too much and finds it difficult to distance his emotions from the distress others may feel - but he may appear to lack it because he sometimes becomes so absorbed in something that nothing else gets through.

It is these kinds of misinterpretation by medics and shrinks which people diagnosed as autistic are beginning to question.

But who do you believe - the doctor or the patient? Personally I side with autistic people - after all only they know truly what goes on inside their own heads.

Like any parent, I long to understand my son so that I can help him, and reading a piece by an autistic person is far more useful to that end.

But just because autistic people telling their own story has practical value to parents, it is not the only reason to use such features. They can also be a damn good read.

Although autistic people may struggle to string a sentence together, some can have a wonderful and inventive way with words. It is little surpirse to me that so many are poets.

The eloquence with which their thoughts and feelings can sometimes spill onto a page has the ability to move me and humble me in a way that a thousand interviews with parents would never do.

I hope next time Autism Awareness Week comes round, that instead of newspapers just sticking to the agenda set out by the National Autistic Society, they try to look at the subject a little more laterally.

Yes, it may take more time than the tried and trusted formula to find the right autistic person to write a first-person piece but the effort will be worthwhile - and you have a whole year now to organise it.

Tip: Use the Internet especially if you want to interview an autistic person. Many find face-to-face contact or even phone calls very difficult. I won't tell you why because then maybe you will be pricked to find out yourself.

Useful links:

• Ooops.... Wrong Planet! Syndrome
• On The Same Page
• Institute for the Study of the Neurologically Typical
• autistics.org