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Lack of awareness of Pathological Demand Avoidance in health and education systems leading to family breakdown, self-harm and trauma
A lack of awareness and support for children with pathological demand avoidance, and their families, is leading to self-harm, burnout, mental health issues, trauma and refusal to attend school.
It’s estimated that thousands of people around Australia are living with a little-understood neurodivergent condition known as PDA or Pathological Demand Anxiety, which causes extreme nervous system responses to everyday requests.
Perth hosted Australia’s inaugural PDA conference on November 11, bringing together more than 700 delegates to hear the latest research from academics, psychiatrists, occupational therapists and educators in efforts to generate better understanding of the condition and help for families.
PDA was recognised as an atypical subtype of autism in the Federal Government’s landmark National Autism Strategy released earlier this year.
The strategy defines PDA as: “An extreme need for control and autonomy driven by high levels of anxiety or an automatic nervous system threat response, which results in demand avoidance, emotional regulation difficulties and a heightened reaction to stress”.
It involves extreme resistance to and avoidance of routine demands of life, caused by overwhelming anxiety and need for autonomy.
While the condition has long been recognised as a specific autism profile in the UK it has only recently been gaining wider recognition in Australia.
Conference Convenor Heidi Brandis said she hoped the conference would lead to wider understanding of PDA, so parents are less traumatised by the education and health systems which often blame them for their child’s extreme behaviour.
Mrs Brandis said often parents had to quit their jobs to home-school their children with PDA, with the stress of becoming full-time carers and a shortage of private specialists causing immense financial and emotional stress for families.
She explained that without proper diagnosis and support, children with PDA suffer significant mental health complications, explosive meltdowns and often end up dropping out of school. This causes families to become socially isolated as traditional parenting approaches do not work, bringing judgement on parents and often leading to depression and marriage breakdowns.
WA’s chief psychiatrist Dr Nathan Gibson said in the conference’s opening address that the historically slow process of accepting new concepts and diagnoses meant that mental health services had caused added trauma for families.
“As chief psychiatrist, I’m aware that kids, parents and adults can find the general mental health system in WA often unprepared for autism, PDA and neurodevelopment disorders generally,” Dr Gibson said.
“Behaviours can be labelled naughty or bad rather than understood as a complex picture where everybody is struggling.”
“Individuals can be diagnosed as having personality disorders. Individuals can be blamed, as we’ve heard, parents can be labelled as responsible and parents can be judged negatively.”
“In these situations … there can be further secondary trauma for both individuals and families contributed to by the interaction with the mental health services.”
He commended the positive awareness change driven largely by the advocacy of individuals and families.
“It’s hard to be patient when our kids and families are struggling right now and not all the experts seem to understand change,” he said.
“Although slow ,it will happen, and strategic advocacy does work, and the time is right to continue to sow the seeds and spread the discussions around PDA.”
Nance Haxton was a journalist at the ABC for nearly 20 years. She’s also worked as an Advocate at the Disability Royal Commission helping people with disabilities tell their stories and as a senior reporter for the National Indigenous Radio Service.
In that time she’s won a range of Australian and international honours, including two Walkley Awards, and three New York Festivals Radio Awards trophies.
Now freelancing as The Wandering Journo, Nance is independently producing podcasts including her personal audio slice of Australia “Streets of Your Town”.
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