" Like Margo before her, Jane realised that all the advice she had been given for handling Mollie was often counterproductive. “I had stood my ground for all those years because I thought insisting was the right thing for her sake. Actually that had caused more damage.”The key, says Christie, is to recognise the behaviour as a kind of panic attack. “If you believe the avoidance and control is about them being wilful, then you are drawn into a confrontation which escalates the child’s anxiety and refusal.”

Website link: http://alexcparsons.wordpress.com/2011/12/20/article-from-the-times-on-pda-extracted-from-pay-wall/

The children who simply can’t do as they are told

Giulia Rhodes

December 17 2011 12:01AM

A new condition on the autism spectrum may explain why some children are defiant

When Max Duncan was a toddler, simple requests for him to put on his shoes or sit down for lunch would lead to four-hour tantrums. Not normal toddler tantrums – he would throw and smash things, scream, hit and kick. His parents could only protect Max, themselves and their property from harm by strapping him into a car seat in the house. As he grew older, things only got worse – on his first day at school he was asked to come off the computer to give someone else a turn and punched the teacher in the face.

His mother, Margo, a GP from Sheffield, became increasingly desperate. “I read all the books and theories, we did sticker charts to death. We ignored the people who suggested he just needed a smack. We tried family therapy because I thought it might be our parenting. None of it got us anywhere.”

While most parents are familiar with the tantrums of small children, Max’s parents were sure this was something different. The school suggested autism, although he didn’t fit all the criteria. It was another three years before Max’s condition was correctly diagnosed. Fortunately for the Duncans, a member of his local authority autism support team – who help autistic pupils and their schools – suggested that he be referred to the Elizabeth Newson Centre in Nottingham. Max, they discovered, had a little-known but increasingly diagnosed condition called Pathological Demand Avoidance Syndrome (PDA), whereby children are unable to cope with any sort of demand.

PDA may currently be little known , but that seems set to change. Experts believe the reported number of sufferers is just the tip of the iceberg. “There are so many children out there with PDA who are not getting the right help,” says psychologist Phil Christie, Director of Children’s Services at the Elizabeth Newson Centre, where the condition was first defined. “It is severely under-diagnosed. We know that around one in 100 children is on the autistic spectrum, but we don’t yet know how many of them have PDA. It is a small but significant proportion.”

So what differentiates PDA from plain naughtiness? Children with PDA essentially have an in-built need to be in control and to avoid other people’s demands and expectations, which raises their anxiety levels to an extreme extent. Christie’s colleagues noted the striking similarities between a growing number of children deemed to have “atypical autism”. They all shared an unusual resistance to everyday demands – even when related to things that they would enjoy. The children were superficially sociable but were often manipulative and lacked awareness of unwritten social rules. Their moods could switch very suddenly and they often confused reality and fantasy.

Some demand avoidance is part of normal development in young children. But PDA is marked by the degree of the behaviour, and whether it continues beyond toddler years. For most children the demand avoidance phase will pass, or can be greatly improved through strategies such as rewards and sanctions (sticker charts, time out or a naughty step), reasoning, praise for good behaviour, peer pressure and routine. But these techniques do not work for children with PDA. Instead, parents need to reduce anxiety by avoiding or disguising demands – which can seem counter-intuitive.