On the eve of Autism Awareness Week, David Newnham reports on the continuing failure to diagnose the disorder
PARENTS who suspect their children are autistic face a wall of denial from health-service professionals, while schools are failing to identify the condition even in five-year-olds, the National Autistic Society is to tell MPs next week. The society will mark Autism Awareness Week by warning that proposed changes to the 1994 code of practice on special needs could remove a crucial early-warning stage for children suffering from the lifelong developmental disability. A recent survey of more than 1,200 families by researchers at St George's Hospital, London, suggested that one in three parents with a child subsequently diagnosed as autistic was turned away on their first approach to a doctor or health visitor.
The St George's study revealed that parents often picked up on communication or other difficulties in the 18 months of their child's life. But in many cases, a final diagnosis of autism was made only after they had exerted sustained pressure on doctors over a number of years.
NAS chief executive Paul Cann is to warn MPs that two new studies have produced results that are equally grim.
"The figures show horrendous delays in diagnosis," he says. "What we've got is an unacceptable picture of confusion, with professionals playing pass-the-parcel with parents.
"Two separate reports now show that parents are not being supported and not being helped to identify the child with an autistic spectrum condition."
While the surveys focus on the failure of the health service to get to grips with autism, Mr Cann is concerned that too many autistic children are not being identified as such even when they start school.
"We're far from convinced that the current arrangements pick up the child with subtler forms of autism - the child with plenty of language, perhaps, but with a social impairment - the so-called Asperger's Syndrome.
"I'm very, very concerned that those able children of four or five are not going to be picked up by baseline assessments, or by other forms of scrutiny early on arrival in school."
Mr Cann is alarmed that the Government intends to remove stage one of the five-stage code of practice, which he says was particularly valuable in cases of autism where early diagnosis can significantly reduce the stress suffered by parents and families. "This is the stage at which you flag up the fact that you have a child who seems to have special needs that may require additional support," he says.
"It was one of the excellent innovations in the 1994 code of practice. The code was flawed in that it made no reference to the word autism - and they are now going to put that right. But at the same time, there is a clear intention to remove this crucial stage of identification."
The National Association of Schoolmasters Union of Women Teachers has already expressed these concerns to Education and Employment Secretary David Blunkett, and is soon to meet Charles Clark, the minister responsible for special needs. The society will argue then that the tribunal system is having to deal with more cases of autism than any other special need.
"We need an NHS initiative to ensure the health professionals are trained and aware of autism," says Mr Cann.
"And if that happens, and if that can then flow on to the education system, we will be a lot further forward."