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Tuesday, 4 May, 1999, 09:00 GMT 10:00 UK
Autistic children 'let down'
Doctors are failing to spot the signs of autism
The families of autistic children are given "frighteningly inadequate" support by health workers, according to a survey.

The National Autistic Society (NAS) says 65% of parents of children with autism or Asperger syndrome had to see three or more professionals before their child's condition was diagnosed.

Forty per cent said they waited more than three years for a diagnosis and 10% waited 10 or more years.

The learning difficulties affect sufferers' ability to communicate with others and respond to the world around them.

The society says many health workers - primarily GPs and health visitors - appear to have little knowledge or awareness of the conditions.

Almost half of parents said that when their child was finally diagnosed they received little explanation of what the disability involved and no advice on where to go for support and advice.

Eighty-one per cent said there was little or no assessment of the severity of the disability.

Most parents said they became aware of autism through friends and the media. Doctors and health visitors were rarely mentioned.

Uphill struggle

Paul Cann, chief executive of the National Autistic Society, said he was not surprised by the survey's findings.

"This is a long, uphill struggle. People are most vulnerable immediately after diagnosis and need support and they are not getting it."

"Things are getting better in some areas, but the picture is patchy."

He said a change of attitude was required from everyone working in the health field, from government ministers to health visitors.

"People are living a nightmare."

He said it could be true that many of those who took longer to diagnose had more moderate disabilities.

Some autistic children appeared to develop the use of language normally, but used it inappropriately.

This was often difficult to pick up on health tests. He said teachers therefore needed to be aware of the problem to alert parents.

Slipping through the net

Many moderately autistic people sometimes slipped through the net or did not get the support they needed, he said.

"They are so near and yet so far. With severely disabled people it is easy to see there is a problem.

"But if you are moderately affected, for example, you become anxious if your routine is changed, you may just be seen as being naughty."

As part of Autism Awareness Week which begins on 4 May, the society is calling for increased recognition of autistic conditions among health workers and the adoption of good practice.

This includes the use of a checklist for autism in toddlers (CHAT) conducted when a child is 18 months old.

The test takes around 10 minutes and is thought to be a good initial indicator of autism.

The society believes early diagnosis and treatment can have beneficial effects.

"Individual programmes can be developed by understanding the child's needs," said Paul Cann.

"For example, a child may become anxious by walking through a door. Parents need to understand that and develop programmes to help the children."

"Autism is not a fixed state."

He said parents needed to be made aware of the different types of therapies so they could choose which was best for them.

The BBC's Simon Jones: Parents struggle to get an official diagnosis
See also:

04 May 99 | Health
Bringing up Edward
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