Patricia Hewitt and Mary Black have lodged a petition at the Scottish Parliament to highlight pathological demand avoidance (PDA) syndrome, which is recognised as part of the autism spectrum.
Appearing at the Public Petitions Committee at Holyrood, both women spoke about being branded “unfit mothers” and sent to parenting classes as a result of their children’s rare behavioural condition. Ms Hewitt’s son and Ms Black’s daughter have been handcuffed and restrained as a result of outbursts.
Children with PDA resist and avoid the ordinary demands of life, and can suffer from extreme anxiety and mood swings, MSPs were told.
Both women, from the Borders, said health and education professionals had failed to recognise the rare behavioural condition, and that many children with PDA are simply labelled as “naughty”.
They said the health and well-being of their families had been impacted, as they called for rare behaviour condition training for professionals to enable them to diagnose the condition, therapeutic programmes for those with the syndrome to be made available, and support for families and carers.
Ms Hewitt has two sons, both now adults, who she says were “failed by the system” because they were not diagnosed and treated at an early stage. One of her sons was handcuffed by police after he trashed his bedroom, and her parenting skills were called into question. She had not heard of PDA until she read an article about Ms Black’s daughter Hannah, 13, in a newspaper. She told MSPs she still does not have an accurate diagnosis.
“Had there been early intervention at the start… I wouldn’t have had police at my front door and my child in handcuffs – his whole life has been absolutely destroyed,” she said.
Ms Black said she was sent to parenting classes when Hannah’s behavioural problems emerged.
“After that it was just like being on a hamster wheel going round and round in circles,” she said. “For 11 years I have been blamed and quizzed about my family.”
In 2015, Hannah attended a specialist residential school, where the rare behavioural condition was diagnosed as PDA within weeks. Aside from the school, Ms Black said: “Here in Scotland I cannot find a professional who understands PDA and is able to diagnose this disorder.” Mrs Black further informed that there are several specialists in England who have been trained to assess and diagnose this disorder, which she and many parents feel needs to be available in Scotland.
“Even though Hannah hasn’t yet been diagnosed officially for PDA, I and my family have been using the management and behavioural strategies for children with PDA and we have seen how much this has made a difference to Hannah in this past year.”
Former Lib Dem MSP Euan Robson, who attended the committee alongside the women, said: “Until the syndrome is recognised there will be endless cases of people who could have achieved so much and might have done so much, and are not able to do so.”
The committee agreed to contact the Scottish Government, Scottish autism organisations, and a range other relevant bodies.
