Jamie, autism and me

by Cambridge News

Hearing her son start to scream, Karen Clark's heart sank. Standing right in the middle of the supermarket, 11-year-old Jamie was having a huge tantrum. And, as his mum knew only too well, he was about to lash out.

"Now he's bigger he gets quite aggressive: he hits me," explains Karen. "When that happens in the supermarket people sometimes feel they should come up and say: 'You shouldn't hit your mum, you know' - and then he'll shout at them too.

"Because he looks normal, people expect him to behave like a normal 11-year-old. But you don't have to spend very long with him to realise something's not right."

Like 500,000 other adults and children in the UK, Jamie has autism. A lifelong developmental disability, it affects people to very different degrees - which is why doctors describe it as a "spectrum disorder". Impacting on a person's ability to communicate with and relate to others, the condition is also associated with a range of learning difficulties.

"We first noticed a problem when Jamie was about two," explains Karen, who lives in Cambridge. "He wasn't speaking; in fact, he wasn't making any sounds at all. He didn't even respond to his name. And then, when we went for his two-year check, he just lay on the doctor's floor and screamed."

Referred first for hearing tests, little Jamie was then sent to the Child Development Centre at Addenbrooke's - where he was immediately diagnosed with autism.

"It was devastating," remembers Karen, 38. "Ok, his development might have been a bit slow, but to be told your child has a lifelong disability when he's only two . . . It's a real shock.

"I can remember going back to the doctor with a long list of questions: What will he be like as an adult? Will he ever speak? They can't really give you any answers, because every case of autism is different, basically.

"I cried and cried; I cried for about a week. And then I thought: 'Right, pull yourself together. He's still the same child he was a week ago'."

Soon after his diagnosis, Jamie was given an educational statement. As a result, specialist teachers came to visit him at home. And then he started mainstream nursery, with one-to-one support.

Jamie began, little by little, to make progress. But, even now, his speech is limited. And, at almost 12, he is still prone to throwing tantrums, needs help getting dressed and he never sleeps through the night.

"He goes to bed really late, about 11.30pm," explains Karen. "And then he's up again at 2am. I have to get up to make sure he's all right - you have to keep an eye on him - and then get him settled again.

"It is exhausting; I have to doze off on the sofa for an hour in the evenings, otherwise I just can't do it."

Karen and her husband Alan have an older daughter, Abby, now 14. And Karen is the first to admit Jamie's condition puts a strain on the whole family.

That is, explains Karen, part of the reason she's decided to do the London Marathon: she's running to raise cash for Cambridge Joint Playschemes (CJP), a charity which she describes as "an incredible source of support".

CJP runs events specially for children with disabilities. There's a cinema club, which meets every other Saturday, a four-day playscheme over Easter and a 10-day scheme in the summer holidays. Jamie attends them all, giving his parents and sister a much-needed break.

"It means Abby and I can go to the pictures, go out for lunch, pop to the shops - all kinds of simple things that we really can't do with him," explains Karen. "If you go out shopping with Jamie you're only allowed to go into DVD shops, which gets very boring! And it's nice to know Jamie's going somewhere he loves - where people really want him."

With the marathon just six weeks away, Karen has really thrown herself into training; last weekend, she completed an 18-mile run. "I do really enjoy the running," she adds. "It's a release for me, to be honest. It gives me time to think. And it's something I do just for myself."

There is, laughs Karen, never a quiet moment when Jamie's around. Keen on climbing, he knows no fear: at three he managed to scale the garden shed. "He found some things, dragged them over and climbed up onto the roof," she explains. "We've now got really high fences right round the garden, and trellis sloping in at the top.

"There have been times when we've lost him - he'll just wander off. You have to try and hold on to him but he won't hold hands: he doesn't like to be touched, so he's likely to throw one of his tantrums."

Getting Jamie out of bed in the morning, in time for his bus to Granta special school, can be a challenge. And he likes to stick to a strict routine: dinner at 4.15pm, followed by watching a DVD, a bath at 6pm, then a snack before bed at 11.30pm.

Like many people on the autistic spectrum, Jamie has certain fixations; in his case, it's an obsession with DVDs. "At the moment he's into My Family, of all things," says Karen, rolling her eyes. "He likes to play the same little bit over and over again . . . Fortunately I'm quite good at tuning it out!"

Jamie is also keen on trampolining, attending a weekly club for kids with special needs at Impington Village College. "He can do it on his own," explains Karen. "He likes that because he doesn't have to interact with anybody."

There are, adds Karen, highs as well as lows. Always reluctant to be cuddled as a little boy, nowadays Jamie will sometimes come to her and ask for a hug. And she says hearing him speak for the first time was a real thrill.

"When they're first diagnosed you wonder if they'll ever speak, whether you'll ever hear their voice," explains Karen, who taught him a basic vocabulary using a picture card system. "To start with he called me mum, I think, but now it's Karen; I think he heard other people calling me Karen and got confused."

Having Jamie has, adds Karen, changed her life in many ways. Thanks to her son, she is now a teaching assistant - who specialises in supporting children with special needs.

"I can't ever see Jamie living independently," Karen concludes. "And every parent wants their child to grow up and lead an independent life. But I'm OK with that.

"I realised a long time ago that you have to take one day at a time; you have to take each step as it comes along."

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