How identification of a little known syndrome opened up new possibilities for my child
“Have you thought of pathological demand avoidance syndrome (PDA)?” said a member of the autism team, after numerous meetings discussing why my son was failing to settle at school.
He was in his second mainstream school, with a statement of 22 hours, and we were all tearing our hair out. “What are his triggers?” they asked.
“Just not doing as he is told, mainly”, I said, dismissing this as insignificant and feeling like a rubbish parent. “All children do that”, they said.
“Yes, they do”, I replied, “but not to the ridiculous extent my son does.” He had some sensory issues and didn’t seem to fully understand social rules, but he had more empathy than most children with autism spectrum disorder (ASD) that I had met.
A quick internet search on PDA revealed a little known syndrome first recognised in the early 1980s. As I read on, this syndrome seemed to describe my son almost perfectly. We had always felt that he didn’t fit the criteria for autism or Asperger’s syndrome but the doctors said ASD was the best fit they could come up with and it would get him some help at school. For years, we couldn’t understand why he would find the normal everyday demands of life, like getting dressed or getting his coat/shoes on, so difficult to comply with – even when it meant he would be rewarded afterwards.
We had tried and tried with all the positive parenting techniques, reward charts, naughty step and time outs, but he never seemed to learn from consequences and could battle with us for hours having awful meltdowns and smashing up the house, even when he was only three.
Things went from bad to worse when he started school and was excluded from the first one several times. The second mainstream school was more sympathetic and flexible, but the staff didn’t understand why the techniques for classically autistic children seemed not to work for him.
Now, this syndrome seemed to explain it all. It suddenly made sense. Children with PDA seem to be fuelled by an anxiety led need to control, have impaired empathy – but with much better social skills than more classically autistic children – and they often fail to respond to praise. They are manipulative and extremely skilful at avoiding any demands, even just perceived demands they feel they can’t meet.
He was diagnosed at age eight and I moved him to an integrated resource within a mainstream school, which already had a child with PDA and staff with PDA training. He was there for four years and, using many of the recommended techniques, they were gradually able to integrate him into the school. He left there having managed to get some Y6 SATS.
He is now at a secondary special school, where they are just beginning to get to grips with him and work him out for themselves. However, with their flexibility and willingness to succeed, I am confident that he is in the best place to learn the skills he needs. It won’t be easy and he will have lifelong problems, but I’m thankful that he was diagnosed early enough in life for it to have made a difference.
The National Autistic Society now recognises the syndrome, and our local child development clinic diagnoses it too, so things are changing slowly. My hope is for every clinic in the country to understand the usefulness of diagnosing PDA so that these children are better understood from as early an age as possible.
Further information
Margaret Duncan runs the PDA Contact Group Forum:
www.pdacontact.org.uk
My son was diagnosed with PDA just over a year ago at 18. He was previously diagnosed with Autism age 2, but there was always a big question mark as he was very sociable from being a baby. When he was 4 months old I took him to see a circus. I remember him jumping up and down on my knee, it was as though he wanted to get down into the ring to where the clowns were performing. When he was diagnosed with Autism I remember asking the specialists “are you sure it is Autism and not ADHD?” Up to the age of 11 months he was progressing normally then I noticed he seemed avoidant, it was hard to engage him in play with toys. When he was young people would comment I was too soft and should be stricter. When he was thirteen I struggled to keep him under control, he rebelled – he needed to have control. Things got worse when he lost his support at college, he destroyed furniture and was frequently arrested. My son is now 20 and has been in a mental health hospital for the past 15 months.
Hi Katymay27,
Thanks for sharing your experiences. The author of this article has just written a comprehensive article on PDAS for SEN Magazine. It’s in the March/April 2014 issue and will be posted on this site in the next few weeks. It is designed to inform people about the condition and how it affects children and young people. Hopefully, it will help spread a little more awareness about the condition.