The wrong end of the stick

Imagine being told your child’s behavioural and social problems
indicate they have been abused – and that you are the prime
suspect. According to experts, more parents and carers of children
with Asperger’s syndrome are facing just this scenario, because
social workers do not understand the condition.

So seriously is the government taking suggestions of false
accusations of abuse against parents of children with autism that
last month education minister Lord Filkin said he would investigate
the issue.

Such misunderstandings have been around for a long time, says Paul
Shattock, director of the autism research unit at Sunderland
University. This is because behaviour commonly displayed by
children with an autistic spectrum disorder, such as Asperger’s
syndrome, mirrors that of a child who has been abused (see “Danger
signals”, facing page). And workers without the skills to
distinguish between the two are jumping to the wrong
conclusion.

“The social care profession has been over-sensitised to abuse,”
says Shattock. “Instead of abuse coming last on their list, it is
first.”

He cites a situation he encountered of a child with Asperger’s
syndrome being convinced by social workers that his parents were
“wicked and evil” and deciding he never wanted to see them
again.

Lorna Wild, a psychiatric consultant to the National Autistic
Society, says that, although some social workers are knowledgeable
about autism, it is not true of the entire profession. “Practice
varies from being amazingly good to appallingly bad.”

She agrees that it is possible for staff to miss a child’s
development disorder and think they have been abused because they
are not familiar with the disorder. But the consequences of
misinterpreting Asperger’s syndrome as abuse and the sequence of
events this precipitates can be devastating for all involved.

Wild says it is difficult to think of a more traumatic experience
for a parent or carer than being accused of abusing the child they
are desperately trying to understand and help.

She argues that, although children with Asperger’s syndrome do not
make emotional attachments like other children, they are still
attuned to their parents’ or carers’ distress. Removing them from
the family home because of concerns about abuse leaves them
bewildered because they react badly to change.

But it is utterly irresponsible for social workers not to
investigate their suspicions just because a child has Asperger’s
syndrome. Andrew Webb, the Association of Directors of Social
Services’ spokesperson on safeguarding children, says social
workers are right to be concerned if a parent or carer continually
presents a child for tests as some may be inventing
illnesses.

“If social services do become involved, we have to rule in or out
the fabrication of symptoms and whether this is being done to gain
the attention of professionals,” he says. “That is difficult to
do.”

The difficulty arises because parents may interpret a social
worker’s questioning about a child’s difficulties as implying
scepticism about their answers, with the result that they do not
trust the professional.

“We have to keep an open mind until we have evidence and this may
lead to defensiveness from some parents,” says Webb.

Details of the scope of Filkin’s investigation have yet to be
confirmed but Shattock welcomes the review “because it implies that
somebody is listening to what’s being said”.

Unlike the reviews that children and families minister Margaret
Hodge ordered social services to conduct earlier this year after
the convictions of Angela Cannings and Sally Clark of killing their
children were quashed, Shattock argues the need for an independent
inquiry. “We don’t want social services to mark their own
homework,” he says.

So how can social care staff ensure they are meeting the needs of
children with Asperger’s syndrome and their parents?

Developing their knowledge and experience of the condition is the
key to providing more comprehensive services, says Wild. She says
the National Autistic Society promotes training courses but “the
job is so huge we cannot change the attitude of every single social
worker out there”.

Shattock would like to see adults with Asperger’s syndrome help
deliver the training. “You can read about Asperger’s syndrome in a
book but coming face to face with a person with the condition is a
completely different experience.”

A PARENT’S NIGHTMARE:

When Jenny and Phil Taylor’s* children, 12-year-old Tom* and
10-year-old Jack*, were diagnosed with Asperger’s syndrome, neither
parent could have guessed the trauma it would put them through.  
Tom, who did not speak until he was three, had been diagnosed with
Asperger’s syndrome in 1999 while the family was living in the
South West. Soon after they moved to another area in 2001, in
search of a better school for their sons, Jack too was diagnosed
with the same condition.  The doctor who diagnosed Jack suggested
social services provide respite care. A month later a social worker
visited the family and offered them overnight foster care, which
they turned down. They had no further contact with social services
until April 2002 when Jack was admitted to hospital with flu and
had a series of scans.   When Jenny collected Jack from hospital,
to her horror the paediatrician called her a “bad parent”. A new
social worker visited the family and involved their GP, claiming
the doctor was “seriously concerned” about the children’s
welfare.   In July 2002 the social worker arrived on their doorstep
with her team manager and a child protection order. The social
worker also spoke to all the neighbours when the family was on
holiday and asked them to ring in and report if they saw anything
suspicious. When the family returned from holiday no one in the
local community spoke to them for 18 months.   “It was awful when
people weren’t talking to us,” says Jenny. “We were being watched
when we were in town.”  The local authority wanted to take the boys
into care and took the parents to court in December 2002. The
council was unsuccessful but in July 2003 the case went to court
again, where the judge described Jenny and Phil as “violent and
abusive” parents and granted an interim care order.   After the
parents took their legal battle to a higher court, a supervision
order was granted and the boys were removed from the child
protection register. The family hoped life would return to normal. 
But when Tom was rushed to hospital with suspected meningitis in
May the staff were rude and unhelpful. The parents discovered their
son’s medical records still contained claims that they had invented
fictitious illnesses, even though they had been reassured that the
claims would be removed.   Jenny is still concerned about how she
and her husband will be treated by professionals in the future. “We
were treated like criminals because the data were incorrect,” she
says. “None of the social workers understood Asperger’s syndrome.
They were just keen on child protection and Munchausen’s syndrome
by proxy.” 

* Names have been changed.

DANGER SIGNALS

• Autism spectrum symptoms that can be confused with signs of
  abuse or fabricated illness include:
• Delay in speech and language or motor development.
• Development of feeding disorders.
• Dislike of close physical contact and cuddling.
• Low self-esteem.
• Having poor quality or no relationships with peers.
• Under achievement at school.
• Development of abnormal attitudes to their own health.