PDA syndrome: 'We thought she was naughty - it turned out she was ill'

The symptoms of Pathological Demand Avoidance syndrome, a little-known relative of autism, include compulsive disobedience. Catriona Wrottesley meets parents of children who can't do what they're told

At four years old, Hayley frequently squared up to her nursery school teacher. Knee-high to the adult who towered above her, her tone was deep and authoritative. She demanded respect. At the end of her first week at nursery, her parents were informed she talked down to her teacher and behaved dictatorially with other children.

Over the years, this compulsion to dominate, coupled with an obsessive avoidance of doing what is asked of her, has got Hayley, now 14, into endless trouble. Intelligent, vivacious, articulate and charming, she struggles to grasp the usual boundaries of human behaviours, interactions and relationships.

Consultations with child psychologists and other mental health professionals failed to come up with an explanation. Until last Easter. At a group for parents of children with behavioural difficulties, Hayley's father Jim, 46, a teacher from Richmond, Surrey, met a parent who suggested it sounded like Pathological Demand Avoidance syndrome (PDA). "When I read the PDA diagnostic criteria, I felt this could have been specially written about Hayley," he says.

PDA is a condition first identified by Professor Elizabeth Newson, former head of the Child Development Research Unit at the University of Nottingham, now consultant in developmental psychology to the Early Years Diagnostic Centre in Ravenshead, Nottinghamshire. "During the Eighties, we tended to get very puzzling children at the research unit," she says. "We specialised in non-communicating children. People would say this child's behaviour reminds me of autism but can't be because these aspects don't fit. To begin with I'd describe these children as 'non-typical autistic'. As time went on, however, I began to realise that although they were not typical of autism, they were typical of each other.

"By the time I had eight children who fitted this pattern, I began to think I might have another syndrome. I now have 150 PDA children on my database."

More than 20 years since Professor Newson identified PDA, word is spreading about the syndrome and Professor Newson is publishing a paper on it this autumn. As yet, however, it does not appear in the diagnostic manual used by paediatricians and child psychiatrists. Why the delay?

"The diagnostic manual is a working document," explains Professor Newson. "Diagnosis is movable. Many of my colleagues are taking PDA on board, before it reaches the manual." Obviously the problem with PDA and similar conditions is that they may be difficult for parents and professionals to recognise. It is natural to hope that your child is having a few behavioural problems rather than suffering from something more serious.

Jill Curtis, a child psychotherapist, is about to publish Does Your Child Have a Hidden Disability?, which looks at PDA, ADHD, autism, Asperger syndrome, giftedness, dyspraxia, dyslexia and a number of other "hidden disabilities". "Often parents know in their bones that this isn't just a naughty or hard-to-settle child," she says. "One mum told me she'd realised something was wrong when her child was four days old, because he didn't seek her face or eyes, like other babies."

Curtis's recommendation is to seek professional help when you are sufficiently worried to want an outside opinion. But even then there are many hurdles. "One mum read her child's medical file and was horrified to read a note in it saying 'this mother has Munchausen syndrome by proxy'. Some parents find themselves referred for marital counselling. The assumption is that the child's behaviour is caused by conflicts in the marriage and over-parenting."

PDA is a pervasive developmental disorder. This means it affects every aspect of a child's life and development, and, unlike an illness, there is no cure. PDA is in the same family of disorders, but different from, autism and Asperger syndrome. A key difference is that those with PDA are superficially socially skilled and even manipulative, unlike those with autism and Asperger syndrome. "Children with PDA often maintain steady eye contact as a means of getting others to do what they want," says Professor Newson. "They are often governed by obsessions. The predominant obsession is avoidance of demands placed on them. Even the most ordinary requests like getting into a car may throw them into panic."

Fran Mitchell, 31, a student from near York, and her husband John Green, 44, a lift engineer, have two daughters, Sophie, nine, and Vicky, seven. Vicky was diagnosed with PDA when she was four. "It's very difficult if I need to go somewhere and Vicky has to come," says Fran. "Getting her into the car can be a major problem. She'll say, 'I can't at the moment. I've got to do something or other' or 'I'm poorly. I've got tummy ache. I need to go to the toilet.' Sometimes she'll flatly refuse. If I can introduce the idea of going out early enough, we can get that refusing over with earlier. When it suits her she'll say, 'Come on, let's go.' That way it has become her decision and that's fine. Everything has to be on Vicky's terms."

Lack of a sense of self means these children will imitate the behaviour of others. Often they find it difficult to understand that they are not an adult. In class, a child with PDA will frequently try to take the role of teacher. "Vicky's come a long way," says Fran. "If you met her you'd think what a lovely child – depending on what she's like at that moment. The hardest thing is that I can't describe her. One minute she can be very loving but within a minute she can be totally upsetting. It's always extremes. There's no middle ground. I don't know who Vicky is."

Handling guidelines for schools are available from the Diagnostic Centre, or the PDA support group website. "The guidelines are quite expensive to put into place and difficult to follow," says Professor Newson. "Whereas autistic children like and respect rules, PDA children like variety. What works today may not work tomorrow, but might work again next week. It is important to remember they do not choose to behave the way they do. These are defensive manoeuvres, stemming from anxiety."

Jim has experienced the benefits of diagnosis and guidelines. In July, last year, Hayley's PDA was diagnosed. By September, an educational statement had been drawn up to meet her needs. She now attends school less than half the time, studying her four favourite subjects, with her favourite teachers. The result is a much happier, more settled child.

The long-term prospects for those with PDA are not positive. The original eight children diagnosed by Professor Newson have not fared well. "The eldest is now 33. They cause tremendous problems because nobody knows what to do with them. They are very manipulative and resist the ordinary demands of life. I only know one in a job. They live with their parents and a few live in communities of one sort or another. One of the earliest girls was placed in an adult community of autistic people but she was excluded in the end and is now in a secure unit. These people appear very robust but they are not. Their panic attacks can be violent. The ray of hope is we now have handling guidelines, so children with PDA should be managed better."

Jim is optimistic. Since Hayley's diagnosis, he says she is easier to be with. He focuses on her positive sides, which far outweigh the negatives. "Having seen what we can achieve, I hope Hayley will go on to study the subjects she has a real flair for. She has a very scientific mind and wants to be a marine biologist."

'Does Your Child Have a Hidden Disability?' by Jill Curtis (Hodder and Stoughton, out 19 September, £7.99). The Early Years Diagnostic Centre (01623 490879). PDA support group: www.pdacontact.org.uk