Every parent lives in dread of the so-called ‘terrible twos’ – the unruly behaviour and ill-timed tantrums.
We’ve all witnessed the car seat struggles or mid-supermarket outbursts that come as part of the learning curve of parenthood, but an increasing number of youngsters are being diagnosed with a condition that means their meltdowns run deeper.
Pathological Demand Avoidance Syndrome (PDA), which is recognised as part of the autistic spectrum, is an in-built need to be in control and to avoid the demands and expectations of others.
First identified in the 1980s by Professor Elizabeth Newson, little is known about PDA and its causes but experts believe it is severely under-diagnosed.
Parent-turned-author Jane Sherwin, 44, gave a presentation at Age UK Leeds to parents from the Jigsaw Tree and ABC Leeds support groups on her experiences in seeking a PDA diagnosis for her 11-year-old daughter Molly on Saturday.
“You could be in a car park and get stuck, and if you forced her in she would just undo the car seat and attack you while you were driving,” she said. “You had to wait until she did it on her own accord.”
She faced daily backlashes which “exploded” at school. Ms Sherwin said: “I was being hit, kicked, beaten and having my house trashed every day.”
Her book ‘My Daughter is Not Naughty’ documents her struggle to get the Molly’s condition properly diagnosed where she lives in Stoke as well as strategies that helped her lessen her daughter’s anxiety such as masking demands.
Behaviour that might be considered naughty comes as a result of a PDA child not being able to cope with demands, which increases anxiety and can cause them to lash out.
Clinicians at the Elizabeth Newson Centre, in Nottingham, have found striking similarities between children deemed to have ‘atypical autism’, where they shared unusual resistance to everyday demands, even linked to things they enjoy.
For most children avoiding demands is a phase but this continues with PDA children.
Mum-of-four Jen Beaumont, from Rawdon, said she was seen as a parent who worried too much when she first flagged up her seven-year-old son Callum’s issues three years ago.
She said: “I have three other children and they refuse to be told and push the boundaries but this was to a degree that was so intense. He just couldn’t do it. It’s frightening to watch.”
The 28-year-old read up on autism and with help from her Leeds GP, local NHS and the Special Educational Needs Co-ordinator at Callum’s school got a PDA diagnosis last week.
“It’s about awareness, if you don’t know about PDA you start to blame yourself,” she said. “The more people are aware the more they can make informed judgements.”
- The Jigsaw Tree support group co-organised the Jane Sherwin presentation.
- The organisation, which is based in east Leeds, is an online resource and community set up by Helen Teasdale in September 2014 for families touched by autism.
- Around 30 people are involved in the organisation. Visit www.thejigsawtree.org for further information.
- For more on Jane Sherwin visit understandingpda.com.
- For more on PDA see www.thepdaresource.com or www.pdasociety.org.uk.