Can fiction succeed where facts haven’t?

A murder mystery novel told through the eyes of a boy with
Asperger’s syndrome has won the Whitbread Book of the Year
Award. The Curious Incident of the Dog in the Night-time
by Mark Haddon has already been judged a classic.

Christopher Boon, 15, is outstanding at mathematical
calculations but hopeless at reading people. A dead dog is found on
a neighbour’s lawn, impaled on a fork. He discovers why as he
struggles to cope with the crumbling of his parents’
marriage.

The judges said Haddon had “used disability to throw a light
upon the world” in the novel. Accepting a cheque for £30,000,
Haddon said he regretted attaching the Asperger’s label to
Christopher, preferring to describe him as a mathematician with
behavioural issues.

Perhaps it’s fortunate that Haddon didn’t make the
change since the book, apart from its inherent merit, provides a
powerful opportunity to highlight the woeful lack of support in the
UK for teenagers and young adults with the syndrome.

Many of those who have it have awkward motor skills. They may
adhere to inflexible routines and behave inappropriately; the
“geek” in the playground. For years, they can copy the behaviour of
others to “pass” in society. At adolescence, it becomes much more
difficult.

Young people are diagnosed very late or not diagnosed at all –
shunted, instead, into prison; left isolated or sectioned. They
fall through a large hole in the welfare net, deemed outside the
scope of learning difficulties and the mental health services.

The National Autistic Society suggests that every trust should
have a senior manager responsible for setting up a strategy. It
should include proper diagnosis (few families are offered care
assessments), respite care for parents, day provision, supported
accommodation, outreach teams, training and alternatives to acute
psychiatric wards where those with Asperger’s are often
temporarily placed – in spite of their intense distress when faced
with chaos and disorder.

Some parents of young people with the syndrome are under huge
pressure. They are trying to cope unsupported with someone who may
become frustrated and violent as their alienation from society
becomes more and more apparent. They are unsure of the future and
exhausted by the incapacity of the system to recognise and meet
their needs. Seventeen reports in eight years have detailed the
disastrous lack of help – perhaps it will take a work of fiction,
to make people sit up and listen.