Attention, please

For a condition that was first identified in the 18th century,
autism has received remarkably little attention. It is only
recently that public awareness of the condition has started to
increase. And this is thanks in no small way to literature.

First there was Mark Haddon’s The Curious Incident of the Dog in
the Night-time. The novel tells the story of Christopher Boone, a
15-year-old who has Asperger’s syndrome, a form of autism. The
nature of his condition, and its impact on his family, is described
through Christopher’s eyes in an unsentimental but endearing way.
Although you are left in no doubt of the challenging circumstances
faced by Christopher and his family, in many ways their lives are
unremarkable. They are a “normal” family trying to cope with
autism.

Haddon’s book has introduced a mass readership to Asperger’s
syndrome, opening our eyes to the condition without bombarding us
with too many details or too much sentimentality. It has already
sold more than 1.5 million copies.

Then, during Autism Awareness Week in May, Charlotte Moore’s George
and Sam was published. Her book is an honest, funny and deeply
affecting account of life with three sons, two of whom are
autistic. The close-up insight into the highs and lows of living
with her sons is possibly the best introduction to autism
available.

The success of both books has sparked considerable media coverage
and public debates. Moore, a Guardian journalist, had already
chronicled her life with George and Sam in her highly acclaimed
Mind the Gap column.

But the popularity of her and Haddon’s books has encouraged TV and
radio, broadsheet and tabloid media to wake up to autism.

Last month, BBC Radio 4 devoted an entire series of programmes to
the subject. This surge of interest has been extraordinary. Haddon
has confessed to being astonished at the publicity surrounding his
“story of a disabled boy living in Swindon”.

The arrival, in quick succession, of two best-sellers dealing with
autism must have delighted the National Autistic Society, which has
been campaigning for more than 40 years to improve support for
children with autism and their carers. These two books have
probably done more to increase public awareness about the condition
than the charity’s entire collection of publications.

But story-telling is not always a helpful way to bring an issue to
public attention. Novels and screenplays can sentimentalise and
simplify issues to such an extent that they hinder, rather than
increase, understanding. It is no coincidence that the National
Autistic Society has a section on its website devoted to countering
the notion that all people with autism act just like Dustin
Hoffman’s character in the 1988 film Rain Man. (They estimate,
incidentally, that at most one or two in 200 people with an autism
spectrum disorder demonstrate his kind of extraordinary
ability.)

Being better understood is what people with autism and their carers
need most. Society’s ignorance about its symptoms and consequences
has resulted in considerable anguish for many families. Even
getting a diagnosis can be a long and difficult process; 40 per
cent of all children with autism wait more than three years. And,
after that, support and services for families are patchy at
best.

Lack of awareness about autistic spectrum disorders not only makes
life difficult for families, it may even lead to tragic
consequences. The announcement of Lord Filkin’s investigation into
claims that some parents of children with Asperger’s syndrome have
been falsely accused of abuse seems to suggest this.

The lives of children who have autism and related disorders will
improve only if society understands their conditions better. Haddon
and Moore have provided a view into the experience of two families,
one real, one fiction, each living with autism. But while their
experiences will be familiar to many, some families will not see a
reflection of themselves in Haddon’s and Moore’s portrayals. Their
books will have done families no favour if they encourage us to
think that all children with autism are alike.

The challenge for campaigners is to get across the point that many
people experience common difficulties associated with autism – as
many as half a million people are now affected in the UK – yet
individual experiences can be very different. We need to improve
our understanding of the shared experiences of those who have
autism and at the same time recognise that they will not all be
like Christopher, George or Sam.

Lisa Harker is chairperson of the Daycare Trust