A couple of years ago, Gold Coast clinical psychologist Stephanie Georgiou’s TikTok followers started bombarding her with questions about an acronym she’d never heard of.
“That’s how I learnt about it myself,” she said.
Her videos on the profile now have tens of thousands of views. Google search traffic for PDA has been growing by 40 per cent a year, with Australia now the top country in the world for searches – an interest some experts put down to a rise in the number of children refusing to go to school after lockdowns ended. And there’s less stigma around mental health diagnoses now.
Increasing numbers of worried parents are turning up at paediatricians’ and psychologists’ offices, kids in tow.
“They come in all the time: the parents say, ‘Oh, I’ve looked it up, he’s got PDA’,” said Professor Mark Dadds, co-director of the Child Behaviour Research Clinic in Sydney.
Georgiou said some adults even look at the symptoms and say, “Oh my gosh, I think this is me! I’ve never related so much, I feel so seen. Their whole life, they just thought they were lazy.”
Rhodes has become a missionary. She’s set up support groups in Australia, New Zealand and the US. She’s been “bombarding” autism researchers with letters. She signs up 10 families a day to her Facebook support group. The growth had been exponential, she said.
PDA was coined by British psychologist Elizabeth Newson in the 1980s to cover a group of children with atypical autism symptoms: social, imaginative, and with “an obsessional avoidance of the ordinary demands of life”. Importantly, these kids seemed to be really struggling at autism-specific schools that emphasise structure, routine and direction, she found.
Newson’s work started a worldwide movement – but the original study has been criticised by other researchers for lacking robust proof that PDA really was any different to autism. And autism often co-occurs with oppositional defiance disorder in children, evidence suggests.
Key features of a PDA profile
- Child resists or avoids everyday tasks and requests.
- Child often has autism diagnosis – child may be sociable and imaginative.
- Child has a high need for autonomy and control.
- Child becomes overwhelmed with internal and external demands, or loss of autonomy, which can lead to meltdowns or shutdowns.
- Child may turn to social strategies to avoid demands.
Source: Dr David Moseley
Children with PDA have an “anxiety-driven response” – similar to a panic attack – when their “sense of autonomy is threatened”, said Dr Nicole Carvill, who works extensively with childhood PDA at Think Psychologists.
That includes doing chores or going to school, but also doing things the child wants to do, “like responding to body cues, hunger, thirst, going to the toilet”.
“In a highly anxious state, the brain of a child with PDA is frantically assessing, questioning and buzzing until, eventually, it goes offline and shuts down. When this happens, it’s a matter of can’t complete tasks versus won’t complete tasks,” Carvill said.
Kristy Forbes, who shares the PDA profile with some of her children, describes a nervous system that is “highly attuned … and very, very fragile” and a “pervasive need for autonomy”. For a decade, she struggled with her desire to plant roses in her garden – “but I could not bring myself to plant these roses”.
“When you’re young, you don’t understand it yourself, so you internalise the labels that are given to you, like lazy, selfish, bludger, no-hoper, self-centred,” she said.
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Forbes has set up a practice supporting children with PDA. The label is vitally important, she says, because it allows parents and teachers to focus on what helps these kids – and avoids blaming and shaming parents or pushing children into traditional autism treatments that “absolutely can be harmful to PDA kids”.
Over time, the DSM has dramatically expanded the definition of autism spectrum disorder, with diagnoses such as Asperger’s syndrome now folded in.
Autism diagnoses have also jumped, up 42 per cent between 2012 and 2015, with more than four in every 100 children now diagnosed.
In a large group of people with a broad diagnosis, significant individual variations are a given. Parents, researchers and autistic people wrestle over when to give those variations a label. Anxiety disorder? Oppositional defiance disorder? ADHD?
Trying to pick out individual diagnoses within the spectrum of autism was “silly”, Dadds, of the Child Behaviour Research Clinic, said. “These kids show overlap as a rule.”
He argues that PDA is an unsubstantiated label for children with a mixture of mild ASD (autistic spectrum disorders), anxiety, and oppositional defiance disorder, rather than a unique hypersensitivity to demands.
“Is there any evidence it’s different from any other variation in these kids? No. But it caught on. And it’s got a big presence on the internet,” he said.
Carvill finds the label eases the worry and confusion of child and parent and focuses their minds on solutions. Without it, “there can be a tendency to see behaviour as a choice”.
People have a right to self-identify – especially given waiting lists for a diagnosis can run several years, said Forbes.
A label can validate – but it can also undermine, particularly when the P stands for pathological.
Said Dr David Moseley, an autism researcher at Monash University: “It’s a very heavy-sounding title which can make it sound like the child’s behaviour is intentional,” Moseley said. “That’s definitely unhelpful.”
Frank Oberklaid, a professor of paediatrics who specialises in child development at the Murdoch Children’s Research Institute, said a label could become a self-fulfilling prophecy for a child.
“Labels stay with kids. It’s a perfectly normal part of behavior for two and three and four-year-old kids to push back.”
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What is helpful? As with many profiles within autism, modifying the environment is key: removing or reducing the demands that trigger overload, or giving children time to prepare for a demand such as going to school.
“Everyone thinks it’s your discipline that’s lacking,” Rhodes said. “Do not be influenced by traditional parenting advice.”
All experts offer the same piece of key advice: if you think your child’s behaviour or emotions are unusual, seek help from a GP or psychologist.
“Challenging behaviour can also be normal, developmental behaviour. It’s important to not just look at social media or the internet, but to ask a professional for advice,” Davis-McCabe said.
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