Pathological Demand Avoidance: Misunderstood condition where kids can’t follow demands

Thousands of WA children are living with neuro-divergent condition characterised by an extreme, involuntary need to avoid everyday demands and expectations. An inaugural national conference in Perth on Tuesday heard how a lack of awareness and support for children with Pathological Demand Avoidance, and their families, is leading to self-harm, crippling burnout, mental health issues, trauma and refusal to attend school. PDA, which was recognised as a subtype of autism in the Federal Government’s landmark autism strategy released earlier this year, involves the pervasive, persistent and extreme avoidance of even simple or routine requests. Demands such as brushing teeth, eating a meal, getting dressed or going to school are perceived as dangerous or threatening by children with PDA, triggering an involuntary nervous system response which can include meltdowns, aggression, anxiety or withdrawal. More than 700 parents, educators, doctors and therapists who gathered at Optus Stadium heard how PDA children were often labelled as “naughty,” “spoiled” or “manipulative” when rather than wilfully showing defiance, they were experiencing a deep involuntary panic. Convener Heidi Brandis said the conference was a watershed moment for families who for years had been judged, blamed, criticised, misdiagnosed and inadequately supported by the education and health system. “It’s our dream for everybody to understand PDA, and also the subsequent trauma that occurs along the journey, so parents don’t feel like they’ve got to walk on hot coals to prove their case every single time,” she said. “Our hope is that medical and allied health professionals, educators and families can work collaboratively for the benefit of children.” Mrs Brandis said depression, self harm, marriage breakdowns and financial stress were rife among families of PDA sufferers, with thousands of parents quitting their jobs to become full=time carers or home school their children. Others were unable to access treatment for autism, due to the “unacceptably long wait lists” in the public health system and the shortage of private specialists. In the opening address WA’s chief psychiatrist Nathan Gibson said while State governments had an increasing appetite to better understand and support neuro-developmental issues, he understood that kids were struggling. “I’m aware that kids, parents and adults can find the general mental health system in WA often unprepared for autism, PDA and neurodevelopmental disorders generally,” he said. Dr Gibson acknowledged in some cases, mental health services contributed to secondary trauma experienced by PDA children and their families. “When there is a concept that is not yet fully understood or accepted; (mental health) services are not set up to understand and support,” he said. But he said the conference, and the ongoing advocacy of families, would spread knowledge, connection and hope and change would happen. Keynote speaker, American author Amanda Diekman, who has PDA, explained how a perceived loss of autonomy could trigger a “fight, flight, freeze or fawn” response in children as their nervous system went into survival mode. She said PDA children were at increased risk of secondary mental health conditions, school exclusion and being under or over medicated. “For so long they’ve been forced to live in the shadows. But now is a chance to change that story; PDA does not have to be the destructive diagnosis that it is currently. “It could be life changing if we peel away the layers of isolation, trauma and misunderstanding and we simply recognise that some people live with a different neurobiological reality, some people move through the world with a brain that is wired differently.” Attendees were also guided on strategies to support PDA children, as conventional parenting and teaching methods are ineffective and can be damaging. Strategies include a “low demand” approach, which involves reducing and adjusting demands to suit a child’s tolerance level.