Trying to unravel the mystery of autism

Brain scan of four-year-old with autism Image copyright Spl

Autism affects as many as one in 100 of the UK's population. In my first blog as the BBC's disability correspondent, I've been talking to people affected by the condition.

"The thing with autism is nobody knows why. And there are all sorts of questions - is it something I ate when I was pregnant? Was it the birth? Is it genetics?"

It is only when the mother of a child who who has autism hits me with these relatively basic questions that I realise how little many parents of those with autism actually know about the condition. But for that matter, little is known about it, full stop.

We know it affects at least 600,000 people in the UK, but this could be just the tip of the iceberg. It is believed there could be another half a million people who are yet to receive a diagnosis. For this reason, many call it an invisible disability. So what do we know about autism?

It's a condition that affects how the brain develops which can then impact on how a person interacts, their ability to communicate and to make sense of the world they live in. It is complex and incredibly varied - from quite mild to so severe that a person may be unable to communicate. The full name for it is autistic spectrum disorder - ASD. It is a spectrum disorder because it affects every individual in a very different way.

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Media captionJack Parcell was diagnosed with autism when he was five years old

Jack Parcell, aged 11, can communicate but he is on anti-depressants and sleeping tablets to help him function at school. It took his mum, Claire Parcell, nearly five years to get a diagnosis. She says that as a baby, Jack would sit in his baby bouncer rocking forward and backward "so violently with his hands flapping".

"He'd be happy as anything, bouncing so violently he broke three baby chairs. What might work for one might not work for another, but when your child is standing up in a cot head-banging the wall there is no-one to help you," she says.

For a while he would communicate through his teddy bear. It was a trick Claire learnt while she struggled to get Jack diagnosed. Jack was confirmed as having autism at the age of five.

The delay in diagnosis is something the Royal College of GPs (RCGP) recognises as a problem. It has launched a three-year training programme to make doctors and all those who work at GP surgeries more aware of autism. Dr Carole Buckley, clinical champion for autism within the RCGP, admits the system is failing those who need support:

"We ought to be able to spot autism, but it is so complex and so difficult, a lot of it is about the GP just thinking about it - thinking about it as a possible diagnosis. There are areas of excellence - those people with autism who have found the right GP for them. For some, it's heartbreaking that they cannot access good care," she says.

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Media captionChris Goodchild: "Autism for me is a painful gift"

That delay in diagnosis is something that Chris Goodchild can relate to. He wasn't diagnosed until the age of 40.

For many years he struggled to make sense of the world - his feelings of being different led him to self-harm and depression. Now he understands his condition - something he calls a "painful gift" and organises his life around that.

The lack of good care is something Helena Scott also knows only too well. Her son Oliver, who is 21, has very complex needs and requires 24-hour support. She says she was given no other choice but to send her son to a residential unit in Stoke - more than 100 miles away from her home in London.

For people like Oliver, autism is complex and presents in behaviours that would challenge most mainstream providers. But now she has found Ambitious College - one of only a handful of schools which is specifically for those with autism - which is close to her home. Oliver is safe, he's protected and nurtured.

For Helena, it was a long hard fight to get him out of residential care and into Ambitious. "There isn't anything out there for adults with autism, which is why this place is great. It's fantastic, it's one of the only provisions I've found that would meet Oliver's needs," she says. "Most of the time somebody like my son would probably be living in a residential home."

Helena and the other mothers I have met don't want to change their children.

They just want to see more money being spent on support - the US spends about £75 per head on people with autism, compared with £6.60 here - and more places like Ambitious, better diagnosis and a greater understanding of this very complex condition, which affects so many people.

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