Tuesday, October 29, 2013

Is it right to try to 'normalise' autism?

A controversial US teaching method, applied behavioural analysis, or ABA, is now being used in a few UK state schools. And parents are moving from all parts of the country to get their child a place.
A year ago, Julie Barber came close to a nervous breakdown. Her son, Jack, who is four, has autism, and she felt overwhelmed by his demanding behaviour. "He was having two-hour meltdowns nearly every day," says Barber, who lives with Jack in Thurrock, Essex. "I've got a bad back just from trying to manage him." Her greatest worry was that, since the age of three, he had regularly refused to eat anything except baby food and custard, and it had to be a particular brown colour. "It was horrendous – if I tried anything else he would be sick," she says. "Even if a drink was too cold, it would make him gag. I was scared that he'd deteriorate because he wouldn't get the right nutrients."
Today, watching Jack happily tuck into sausages and baked beans, she still finds it difficult to believe how far he's come. "He eats pretty much everything now. I can take him out to a restaurant, or a party. You have no idea what that means."

In September last year, Jack started at Treetops, one of a handful of state special schools in the UK offering a programme of applied behavioural analysis, or ABA.

First developed in California in the 1960s, ABA uses a system of rewards to change children's behaviour and teach them new skills. It has always been controversial – psychologist Ole Ivar Lovaas, who pioneered the use of ABA on children with autism, used "aversives", such as striking children or giving them a mild electric shock, when they did not comply. These punishments have long been abandoned, but critics still warn the method is overly demanding – some programmes involve 40 hours a week of contact time – and have likened the approach to "dog training".

However, ABA has seen a huge rise in popularity and is now widely used in the US as an approach for autism. Online, there is an abundance of ABA success stories, with consultants describing it as a highly effective way to "normalise" children with autism and help them communicate and function in the world.

Demand for ABA is just as high in the UK, but the majority of programmes are in the private sector, meaning schools like Treetops have become very oversubscribed.

"We are at absolute capacity," says the headteacher, Paul Smith, as he strides through the serene, spotless corridors at Treetops, decorated with haiku poems and summer holiday reports written by the children. "Families are moving from all over the country to get their child in. They are desperate. We know that the earlier a child starts on the programme, the better their outcome will be, but, unfortunately, we're getting log jams, which means families are left waiting."
ABA can be used for anything from improving behaviour to teaching curriculum subjects. The key tactic is to engage the child using individual rewards or "reinforcers".

At Treetops, which uses a type of ABA known as verbal behaviour or VB, each child is "paired" with an assistant who carries a bag of "rewards" – toys or props the child enjoys using. Whenever they perform a task correctly, or behave as they are being taught to, they get a few minutes with their reward. In one of the older year groups, a teenage boy is treated to five minutes on the Nintendo DS, while another runs a wooden toy up and down his arm. In the nursery, a teaching assistant simply blows bubbles around the room as a reward for her pupil correctly saying his numbers.

"It works because it's so individualised," says Jennifer Hubbard, an ABA teacher and manager of the school's VB programme. "Each child's programme looks very different and we make it specific to what's going on in their life.
Read the story at TheGuardian.com

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