Sophie Petit-Zeman on the man who is helping speed up diagnosis of a condition which affects over 2,000 British children a year
The front room of the Darwin family’s house in Barnet, north London, is full of the paraphernalia of domestic life. Books line the walls, jostling for space with wedding photographs, a television and computer workstation. In the middle, a large bouncy castle is occupied by three attractive, lively, children, Miranda, five, Owen, seven, and Camilla, 10.
Their parents Andrea and David explain that they have to have the castle for Owen. On the wall, one of Owen’s drawings shows a fairground with a bouncy castle. In breaks from bouncing, he is making a book entitled The Teletubbies and their Bouncy Castle.
David says, “If we go to a fete where there’s a bouncy castle, Owen makes us stay until it’s packed away. We go on holiday to the same place every year because there’s a bouncy castle.” Andrea says Owen often gets obsessed with things he likes. It’s all part of his autism, diagnosed last year. Andrea explains how her experience with her eldest daughter Gemma, now 12, left her sensitive to Owen’s difficulties.
“Gem’s problems at school started when she was five. I knew she was bright but the teachers said she was slow. She was struggling, and got a statement of special educational needs, but we still didn’t know what was really wrong.”
For five years, Andrea and Gemma ricocheted around local health and
education services. By then, Andrea says, “Gemma wanted to be dead. The
strain of school was awful and we were begging for a proper assessment”.
Andrea hadn’t considered autism until a neighbour, hearing Gemma’s
tantrums, suggested it.
Andrea contacted the National Autistic Society
which said that Gemma’s flapping, spinning and other behaviour was typical of
the condition. They suggested that David Skuse, professor of brain and
behavioural sciences at the Institute of Child Health, could help.
Gemma’s GP referred her to Skuse’s clinic at Great Ormond Street
Children’s Hospital. Within two months she was diagnosed with Asperger’s
syndrome, a form of “high-functioning” autism.
After her experience with Gemma, when Owen’s teacher mentioned
autism, Andrea swung into action. “The GP suggested our local psychiatric service,
but I said, ‘No, I’ve not got five years to wait like with Gem.'” She
wrote to Skuse and within weeks Rebecca Chilvers, his roving clinic
psychologist, had assessed Owen at home.
Chilvers has seen children aged from two to 16 in 80 families across
Britain, cutting waiting times for new appointments from five months to
just two weeks.
As she explains: “A few other clinics see children with
high-functioning autism, but none offer a pre-clinic home visit and
follow-up assessment at school. High-functioning autism can be very hard to
spot. It’s often mistaken for conduct disorder because affected children
get intensely frustrated and no one asks why.”
Chilvers’ home visit involves filming the child doing a structured
autism assessment and an IQ test. Within about four weeks families see
Skuse, whose computerised system asks parents 140 questions about their
child’s strengths and difficulties in a standardised, quickly analysed
way.
He usually makes the diagnosis the same day.
Skuse says that many parents ask, “How autistic is my child?” and
that the computer programme allows him to answer. “I assess children who have
autism but also those who are developmentally normal or have other
problems.
I can tell parents quite accurately where their child is on the autism
spectrum and offer clues about their future.”
Many children such as Gemma and Owen have autistic problems which
are sufficiently subtle to be missed or mistaken for something else, and Skuse
too is looking to the future.
He believes that those working in local mental health services must
be better trained to detect autism. Later this year, a new member of staff
joins the Institute of Child Health dedicated to doing just this. Skuse
says “We haven’t advertised the course yet, but about 80 paediatricians,
psychiatrists and clinical psychologists have already signed up. We hope
to train 150 annually, enabling them to spot high-functioning autistic
children younger and identify the help that can revolutionise lives”
But Skuse is not optimistic that children always get access to the
necessary care and support. “We have a psychologist who offers a short
course in survival social skills, and children benefit enormously. But we
can’t provide continuing care for all those we see, and they need to be
confident in local education and health services.”
Andrea says that these dismally failed her children. Chilvers agrees
that getting appropriate support in school is often difficult. “Not all
education authorities give children statements of special education needs,
so it’s hard to see how some will be helped.” Her comment reflects last
year’s audit commission findings that children are often let down by
patchy, inefficient services.
Back in the crowded bouncy castle room, it’s difficult to imagine
that it feels as if something’s missing. But it does. It’s Gemma. Owen and his
sisters talk about her a lot. Gemma has spent the past five months in a
psychiatric unit, with obsessive compulsive disorder. Andrea says she’s
sure that this is a result of the years of trauma before Asperger’s syndrome
was recognised. “How many 12-year-olds do you know in mental hospital? It was
fight, fight, fight all the way to a diagnosis.”
Skuse agrees that Gemma’s current problems are probably distinct
from her autistic disorder, saying that “co-morbidity” – conditions existing
alongside autism – is not uncommon.
Andrea is worried that Owen may go down the same route as Gemma. “He
was diagnosed quickly, but that’s no good if he can’t get the support he
needs.”
It’s easy to forget that Owen needs help. He burrows his head deep
into the sofa before dashing back to bounce, and Andrea looks tired. She’s
only missed the trek into central London to see Gemma twice in five
months. Andrea and her husband want to put the bouncy castle in the garden when the weather gets better. With any luck, Gemma will be home to enjoy it.