Autism: Child diagnosis in Wales can take seven years

Lisa Phillips from Pembrokeshire set up a support group on Facebook for parents waiting years for their child to be diagnosed

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Some parents in Wales are having to wait longer than seven years to have their children diagnosed with autism, BBC Wales has learned.

A leading charity says almost half wait more than three years for diagnosis, compared to one-third in England.

The Welsh government says work is under way to improve the diagnosis of children and adults.

It commissioned a report which found a "lack of consistency of services (postcode lottery)".

Start Quote

If Pembrokeshire is world-leading then I dread to think what the rest of the world must be like, because we are floundering”

End Quote Lisa Phillips Parent

The report, commissioned 18 months ago, sought the views of clinicians.

It also found a lack of understanding by senior management of the time and resources needed for diagnosis and "a lack of ring-fenced resources for ASD (autism spectrum disorder), lack of commissioning and waiting lists".

The Welsh government claims to have a "world-leading" autism strategy, launched in 2008, and has ring-fenced £7.4m to support it.

ONE MOTHER'S EXPERIENCE

Jill Grange, from Bridgend, whose son Matthew is now 14, said: "I think I noticed something between 18 months and two years of age because he seemed to be doing OK but then he lost the speech he'd already started to develop which in itself was a little slow.

"He also became much less interested in other people although he was still quite sociable with us.

"It was the development of his sensory behaviours and the fact he never stayed still. I knew there was something wrong and I did keep asking people but they reassured me he'd be OK.

"We were living abroad and by the time he was three and at nursery it was obvious he had a problem. When we came home I thought I'm going to try and see what the problem is.

"He had a test at three-and-a-half and I knew he would fail the speech and language. We had a meeting with the diagnostic team when he was nearly four.

"They talked about autism and I didn't mind the label as I was coming round to it. The diagnosis finally came at four-and-half."

One in every 100 children is born with ASD, a lifelong developmental disability that affects how people communicate and relate to others. It also affects how they make sense of the world around them.

The National Autism Society Wales says 47% of parents in Wales wait longer than three years for a diagnosis, compared with 34% in England.

The charity's head of external relations, Neil Ingham, told BBC Wales' Dragon's Eye programme: "We know that with the right support and intervention a child can have chance to thrive and develop and reach full potential, but if it's not good enough you're going to fall short of giving that child the best start in life and incur bigger cost in the long term in terms of mental health and employment and range of services older person will need."

Lisa Phillips, who waited two years to have a diagnosis for her child, has set up an online support group for parents.

"I've heard a lot that we have a world-leading autism strategy, and that sounds fantastic... how lucky we must be," she said.

Start Quote

I fully recognise the importance to parents and children of receiving a timely diagnosis”

End Quote Gwenda Thomas AM Deputy Minister for Children and Social Services

"That's all very well, but we're not seeing the benefit in Pembrokeshire. If Pembrokeshire is world-leading then I dread to think what the rest of the world must be like, because we are floundering.

"Parents are desperate. I've been in contact with one mum who had to drop her working hours from 30 hours to seven because her child needs constant watching as she is suicidal... a child is suicidal."

In a statement, Deputy Social Services and Children's Minister Gwenda Thomas said: "I fully recognise the importance to parents and children of receiving a timely diagnosis.

"Diagnosing ASD is complex, involving multi-agency, speciality assessments and this can take time.

"Work is ongoing to improve diagnosis in children and adults, while ensuring greater consistency in its application throughout Wales."

She added that accessing services did not always depend on completing a formal diagnosis "and I expect professionals to ensure families receive appropriate support at the right time".

Conservative AM Mark Isherwood, the chair of the assembly's cross-party group on autism, said there were questions to be asked about whether the strategy was "actually doing what it was supposed to: to produce better outcomes to children and adults on the spectrum, rather than simply being a document to boast about because 'we're the first in the world'".

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