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Last Updated: Wednesday, 5 January, 2005, 15:08 GMT
Even a GP can miss her son's autism
By Jane Elliott
BBC News health reporter

Dr Sylvia Bond and son James
James had problems with language
When Dr Sylvia Bond's son James was slow to speak she worried about his development.

She decided to have his hearing checked, but what the GP of eight years - and practice lead in child health services with a diploma in child health - did not expect to hear was that her little boy was autistic.

Just after his third birthday, however, that is the diagnosis she was given.

Despite her experience she had missed all the signs and says it showed her just how easy it can be for the professionals as well as lay people to miss the subtle signals.

Unlike many autistic children James was affectionate to his family and a very happy little boy.

And although he had no proper speech by the age of two his mother was sure there was another explanation.

Tell-tale signs

It is very difficult to put a date on when I first noticed there was a problem, she admits.

If I had not been a GP I would have probably taken him to the doctor sooner.
Dr Sylvia Bond
"He was not speaking. I think he might have said dog and duck once, but a trip back to the park to see if he would say them again had no response.

"And he never pointed at anything.

"He did not develop speech and he was a child who did not understand speech. I thought he could understand the word 'no', but he just understood the tone of voice that I used.

"He did understood the word 'pop' as in ice pop.

"I did not see the lack of eye contact, you don't when your child is cuddled into you. It takes someone else to discover it.

"As a parent you know something is wrong, but you do not know what.

"If I had not been a GP I would have probably taken him to the doctor sooner.

"If I had not been a doctor I would have asked for him to go for speech and language therapy."

So she referred him to an audiologist.

"I thought he had a hearing problem.

"I referred him myself to the hearing clinic as I was aware there were waiting lists for the speech therapists.

"I thought he needed intensive speech therapy."

Solo play

Dr Bond, a GP in Romford, Essex, said James would sit for hours playing happily with his Thomas the Tank Engine babbling to it in make-up speech like Star Trek's Klingon.

Autism
Autism(including Aspergers syndrome) is a lifelong development disability.
It is a spectrum condition, which means it can occur in different degrees of severity.
It affects about 530,000 people in the UK.
It is characterised by three main impairments: difficulty to form social relationships; problems with verbal and non-verbal communication and the development of strong narrow obsessional interests.
He could do complicated jigsaws and soaked up hours of television, but was unable to respond to his name.

To him 'James' was merely Thomas' red friend, the number five engine.

The audiologist confirmed that James was able to hear and referred him to the community paediatricians, who highlighted his high intelligence levels, total lack of language and mixed social skills.

Dr Bond became aware that James might be autistic, although there was still no official diagnosis.

"Despite being a GP my experience was of children who are extremely autistic, whereas James is at the mild end of the spectrum.

"But these are the children for whom an early diagnosis can be most useful."

Home help

While waiting for his diagnosis James was signed up for the home tuition service for pre-school children (known as portage) and speech and language therapy (salt).

Dr Bond was taught how to communicate with James without the use of verbal language through symbols and signs.

His final diagnosis was made after he was observed not reacting in the assessment centre when another child hit him.

James, at the age of three, learned to read, say and then finally understand words - in the way in which someone might learn a foreign language.

Now aged six his reading and writing are above average.

He is in a mainstream school and he shows academic potential.

And as a high-functioning autistic boy there is every hope that James will go on to have a very successful academic life.

Struggle

But as his mother explains it has been and still often is a struggle as it is difficult to keep him focussed and he needs his full-time teaching assistant support on a one-to-one basis.

"As he started getting older I noticed other signs of autistic behaviour. Loud noises would upset him.

"He loves salt and certain foods, but is also very finicky about eating foods with certain colours or tastes and will not wear silky type clothing because it distracts him.

"He has had to have the labels cut out of his clothes because they distract him, but as he has grown older he is becoming more tolerant."

James now has a gluten/casein-free diet and takes omega 3/6 oil supplements.

If they stick to this they have a happier and calmer child.

But even the smallest diet changes can leave him distracted and obsessive and waking at 3am.

Social side

Although lessons are rarely a problem for James the social side of school sometimes is.

He often finds it difficult to interact and play time and lunch time can still be a bit of a struggle for him, so he only has three school lunches each week.

But Dr Bond says James' problems have made her much more sensitive to autism and she can now make a diagnosis in ten minutes, although she would always refer a patient for a full assessment.

She also tells affected families about James as she hopes she can help them relate to the problems.

Diagnosis vital

A spokesman for the National Autistic Society (NAS) said that a speedy diagnosis often made a big difference to the help and support a child could receive.

"Once a child is diagnosed it's desirable to access an early intervention programme as this will help the child and the whole family.

"There is no cure for autism it is a lifelong condition.

"However, there are various interventions or therapies available that can make a real difference and help the person achieve his or her full potential.

"There is evidence to suggest that intensive early intervention can result in a positive outcome for some children with autism."

The NAS said that the first port of call for parents worried about a child was the local GP, who they could ask to refer their child to a local diagnostic and assessment expert like a paediatrician, clinical psychologist or child development team.

But they said that there was still a 'widespread lack of understanding' about autism among professionals who often missed the signs and they called for better training into the condition.

In a 2002 NAS survey 'GPs on Autism', four out of ten GPs said they didn't have sufficient information to make an informed assessment about the likelihood of a patient having an autistic spectrum disorder.

Over one in eight said they would not know how and where to refer a patient with autistic spectrum disorder.




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