Novel has shed light on Asperger's Syndrome but
families still find themselves under investigation
Mark Haddon's poignant story of Christopher Boone, a teenager suffering
from Asperger's Syndrome, in The Curious Incident of the Dog in the
Night-Time sold close to a million copies and won the Whitbread ook of
the Year.
But its success has led to charities and experts on
Asperger's saying that increasing numbers of parents are contacting them
to report harrowing cases where childcare proceedings are being brought
by social services. The government is now to investigate the
allegations.
It is estimated that 48,000 children in Britain suffer from Asperger's,
a form of autism, yet despite it being a medically accepted condition
local authorities are accused of disregarding scientific opinion in
favour of diagnoses of abuse.
Professor Simon Baron-Cohen of Cambridge University has accused the
local authorities of 'turning the clock back 50 years'.
The situation has arisen because, like Christopher, the child detective,
Asperger's sufferers often possess very high IQs yet can be almost
totally lacking in social skills. This can lead to apparently odd
behaviour being misinterpreted.
'The fact that the book came out means we have increased recognition of
Asperger's,' said Baron-Cohen. 'But this has revealed that schools and
social services have been misrecognising it and putting it down to bad
parenting.'
Parents have been contacting charities such as the National Autism
Society, which is helping a mother accused of Munchausen's By Proxy, a
controversial diagnosis where mothers are accused of deliberately
harming their own children. 'This is despite the fact that the child had
been diagnosed with Asperger's and the very existence of Munchausen's is
being questioned,' said a lawyer involved with the case.
Education Minister Lord Filkin told BBC Radio 5 Live that his department
would urgently investigate the allegations.
At her home in Essex, former insurance clerk Debbie Storey is still
trying to make sense of the traumatic events of the past few months when
she and her husband, Michael, came desperately close to having both
their children taken into care.
As is common with Asperger's children, they removed their sons, Ben, 15,
and Sam, 10, from school after they fell prey to severe bullying. 'Ben
once came home with a huge bruise after someone hit him and he had his
tuck-box rammed into his face,' says Debbie. 'It got so bad he
self-harmed and took a big chunk out of his own flesh.' She now teaches
both boys at home, which she says caused increasing tension, first with
the Essex education authority and then social services.
Debbie says that her constant battles to get provisions to which they
were legally entitled led events to take a more sinister turn. Last year
a confidential report prepared for the council accused Debbie and her
husband of psychologically abusing their children. The report concluded
that: 'Mr and Mrs Storey are consciously or unconsciously using their
children to meet their own needs. They appear to lack an appropriate
awareness and consideration of the children's needs and this in our view
has and continues to negatively affect both Ben and Sam.' Debbie
believes this was a veiled hint that they suffered from Munchausen's.
This summer Ben had to give evidence before a child protection panel,
where he says he counted 22 people sitting around a table waiting to
question him. His speech is clear and logical, peppered with the formal
phraseology reminiscent of 1930s news broadcasts, which is typical of
children with Asperger's.
'I only had five minutes to say why I didn't think I should be taken
into care, which I don't think is very fair,' he said. Minutes later the
chairman of the panel came out to see him with some shocking news. 'He
said, "Right you're on the at risk register because your parents are
abusing you emotionally and physically". At first I was numbed by that
information, just the way that it was said, quick, sharp.
'The next words out of his mouth were, "It concerns me you are not into
sport and fashion like normal children of your age". Then, after that
gem, he said: "Oh, it's the decision of the panel that you've got to
lose some weight". No offence to the panel, but half of them were
overweight.'
The family's legal team challenged the decision and last week Debbie and
Michael received a letter from Essex County Council to say their
children were no longer being considered for care proceedings. A council
spokesman said the authority never commented on individual cases.
Such incidents are becoming increasingly common, said Baron-Cohen. 'It
risks turning the clock back 50 years to when parents of children with
the related condition of autism were blamed for having caused their
child's condition,' he said.
Social workers say they face a particularly sensitive task when trying
to assess children who may have special needs. 'Just because a child has
Asperger's doesn't necessarily mean there isn't a problem with
parenting,' said John Coughlan of the Association of Directors of Social
Services. 'Some studies have shown the children who suffer from
disabilities are at potentially greater risk of abuse, so we always have
to look carefully at every case.'
·Matthew Chapman's investigation, The 5 Live Report: The Curious Battle,
can be heard on the Worricker Show on BBC Radio 5 today at 10am.