The children who simply can’t do as they are told
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.
As for what causes it, scientists as yet have no definitive answer, although as with other conditions on the autistic spectrum, they know that the brain is wired differently – in many cases probably due to genetics – and that it is a lifelong condition, and one which is certainly not caused by bad parenting.
A major conference on PDA, run by the National Autistic Society, was held recently and a book on the condition, written by Christie and other parents of children with PDA, was published this autumn. The Institute of Psychiatry is undertaking a research project which should help develop clearer guidelines for diagnosis and support.
These are all firsts in the field and Christie is hopeful that they will raise acceptance and knowledge among medical and education professionals as well as the public. He believes that the future for children with PDA will improve immeasurably when this happens. “I’ve been around long enough to remember when there was a reticence to accept autism as a diagnosis. It takes time, but once you have proper recognition you can start to offer the correct support. The point of diagnosis is to help the child and the parents. People often talk about ‘labelling’ children as a bad thing, but a diagnosis is a signpost. We then begin to understand.”
Jane Sherwin, whose eight-year-old daughter Mollie was diagnosed with PDA in May, agrees. “It was such a relief. I felt I was being given my daughter back. We had a path to follow rather than wandering about in the wilderness, and I wasn’t to blame.”
Before the diagnosis Jane and her husband Lee were at “crisis point”. Mollie had been out of school for a year after countless exclusions. “She was totally dictating our lives – what I wore, if I could make a phone call, who could come round,” says Jane.
On one occasion Mollie’s older brother Jake had friends over. When they became sick of her attempts to control their games, Mollie had a five-hour outburst. “She was kicking, grabbing my hair, punching me, biting, throwing things at me. The doors are all broken from slamming and there are chunks missing in the walls.”
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.”
Like Max, Mollie is now back at school full time. She has two helpers and access to a separate classroom when she needs it. Family life is vastly improved and the “meltdowns” have become less frequent. “Things aren’t easy but I can make time for Jake and Lee. Everyone is happier,” says Margo. “We cut the demands right back. The ground rules are that Mollie cannot hurt people, damage property, or ruin Jake or other children’s games.”
Beyond this, nothing is ever directly demanded: a system Jane describes as “exhausting but gradually becoming second nature”. Tasks such as dressing, washing and going to bed are presented as a choice, and Jane accepts that the process can be slow and sometimes unsuccessful.
“If she won’t brush her teeth or eat her breakfast I leave it. I work out what matters most and I am more fine-tuned to when she is too anxious to cope with a demand.”
Jane is aware that many people would dismiss her daughter as plain naughty, and in need of a firmer hand. “People do tut and stare. I feel embarrassed but I also feel angry. They should live my life for a week,” she says. “People have asked me how it is that these children weren’t around 50 years ago. I say they were probably in an institution.”
Almost all parents of children with PDA experience this lack of sympathy and understanding, says Christie. “As awareness rises that will ease, but it is still very difficult. There are sceptics but we see these children. We know it is real.”
For Jane the proof, should she have needed it, is the change in Mollie’s behaviour. “We can have fun together, she is affectionate again. I feel hopeful for her future.”
PDA: the signs
A degree of demand avoidance and opposition is typical in all children, so identifying Pathological Demand Avoidance Syndrome (PDA) is difficult, particularly in pre-schoolers. The key is the degree of the behaviour, and whether it continues beyond toddler years. If your child has started nursery or school and is developing differently from his or her peers, with tantrum-style behaviour that is more appropriate for a two-year-old, it might be a sign of a problem.
Unlike other autism spectrum disorders, PDA affects boys and girls roughly equally.
In a child with PDA, simple requests to do everyday things can trigger outbursts. Most typically these include getting up, dressed, and ready for school, leaving the house, and joining in family meals. Even actions that the child might enjoy, such as playing a game, might trigger a reaction — anything where the child feels that control is being taken away from them.
The child may indicate its distress in the following ways: being distracted, making excuses, employing delaying tactics, retreating, arguing, or becoming violent. Initial research findings show that boys are more likely to react with aggression, and girls with manipulation.
Traditional parenting techniques involving rewards and sanctions, reasoning, praise and routine will actually increase the anxiety of a child with PDA.
For more information and advice on PDA see pdacontact.org.uk or autism.org.uk, or read Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy (Jessica Kingsley Publishers, £12.99).