Innovation needs heroism
Imagine being trapped in such an anxious state that normal everyday routines and requests were monumental challenges, and a need to control everything and everybody dominated your waking life...
These days autism is widely acknowledged but it's a different story for PDA, which stands for Pathological Demand Avoidance.
PDA is a subset of autism that isn't currently formally recognised as a subset of autism by NICE or the NHS.
One of the pioneers leading a movement to change this is Dr Hilary Dyer, a Worcester-based independent Specialist Consultant Educational Psychologist.
One of only a handful of professionals in the UK who assess and diagnose PDA, Hilary works with children between the ages of three and 16.
"I'm the only one who travels to assess and observe children in their own home and, where possible, school setting," explains Hilary.
Re-framing the three 'r's
Hilary practised as a special needs teacher for a decade before becoming a psychology university lecturer, and later gained a Doctorate from Surrey University.
Her teaching background feeds into her PDA work; she regards the three r's as resilience, resourcefulness and reflexivity, and suggests that she herself needs them in her mission.
"I need resilience to the anti-PDA brigade, resourcefulness to design bespoke creative child-focused intervention packages, and I also need reflexivity - I am constantly evaluating whether I am doing this in the best way," she explains.
Hilary's services are routinely commissioned by local authorities, clinical commissioning groups (CCGs) and by parents directly who are looking for a specialist assessment and diagnosis of PDA.
Owing to the lack of formal recognition of PDA, Hilary also regularly takes the stand as an expert witness in appeal cases to the Special Needs Tribunal, explaining her clinical reasoning and outlining her professional opinion of the required interventions and programmes to help youngsters with PDA.
A voice in the wilderness
"The difficulty with PDA is that it's not a stand-alone condition - it has to be seen within the autism spectrum," says Hilary. "It requires a pre-existing presentation and diagnosis of autism."
It was Professor Elizabeth Newson of Nottingham University who first identified that there was a group of children who didn't fit the typical autism spectrum disorder "triad of impairment', (rigidity of thinking, repetitive and stereotyped behaviours and problems with eye contact and social interaction).
"Some children don't fit the classic autism spectrum but they have a clear presentation of PDA," explains Hilary.
"Children with PDA have good eye contact and they use language to manipulate and control. There is no particular gender dominance. The main differentiation is the level of anxiety they present with which prevents them from engaging in activities," she says.
"The anxiety comes from the child having tremendous internal pressure. They need to be in control of a situation and one of the drivers for this is an underlying belief that everything has to be perfect."
PDA can manifest in a range of behaviours from mild passive avoidance to the most violent outbursts of challenging behaviour.
Children with PDA are routinely misdiagnosed with ODD (Oppositional Defiant Disorder,) Attachment Disorder, Conduct Disorder and often parenting style is blamed.
The innovation underpinning Hilary's practice is founded on her acknowledgement, recognition and full understanding of PDA.
"I think the lack of recognition is resistance driven - if recognised it would involve training of clinicians and other professional staff and investment of resources.
"You've made a world of difference to our child and our family"
"When educational or clinical staff don't understand PDA, their frustration with the child can make the situation worse," says Hilary.
During 2017, the desperate parents of a seven-year-old with PDA on the Isle of Wight commissioned Hilary to work with their son. He had been excluded from several schools including a specialist Autism Resource Base and parents recognised that his existing ASD diagnosis wasn't reflective of his problem.
Hilary spent a day with 'Freddie' and his parents, observing him in structured and unstructured activities, and looking at how he interacted with his parents. Since he was no longer in school, she looked at school records which documented his numerous exclusions to see the problems he had engaging in school activities and how he interacted with peers.
"I look at how a child engages in an unfamiliar task with an unfamiliar adult, and I evaluate the shifting dynamic and control. Part of the assessment involves seeing how youngsters respond to an unfamiliar adult. I'm often told to get lost- or worse! - which is an anxiety-driven response that comes out as anger," explains Hilary.
"I assess the anxiety-driven need to be in control, and the extent to which language is used to manipulate everything and everyone. Freddie exhibited extreme lability of mood - switching from calm to hyper-aroused and back down again as soon as he perceived he had lost control of the situation."
At the heart of Hilary's work is the innovative concept that since PDA centres on the anxiety-driven need to control, the child with PDA needs to be given the control to become the designer of their own learning environment, learning experiences and educational package.
"I worked with Freddie (through his parents) to create an individual bespoke package that included forest school, one-to-one swimming sessions and video and film-making sessions. It's about creating a package that reflects his interests.
"The most notable feature of an individualised package is that it is not what is offered as a standard package in the education system. "It's always hugely rewarding and satisfying when parents email me - and I've had three recently- telling me I have made a world of difference to their lives, and their children."
The way forward
Hilary's aim is to use her clinical diagnostic practice to draw out and move the field on - building on Professor Newson's original work. As part of this, she is working on a book, New Insights into PDA, due to be published later this year.
"I had the great pleasure of meeting Elizabeth Newson in the 1980s, and for me she has been a guiding light. Now we are 30 years on from her original research and the condition is still not yet recognised in the diagnostic manuals - it's my aim to get PDA recognised within the diagnostic framework.
"I'm hugely honoured and privileged that parents, local authorities and CCGs place their trust in me to assess, diagnose, and give evidence in court. As I see it, It's not a service I offer, it's not even a job - it's a calling.
"A child with PDA is no different to any other child but they have different needs - they're just wired differently," says Hilary.
One thing is for sure, Hilary is the Joan of Arc for children with PDA - fighting for recognition and for better understanding so the world is a little less threatening and hostile and they can find their place in it more easily.
If you want to find out more about PDA and Dr Hilary Dyer's innovative work visit www.drhilarydyer.co.uk
© Copyright 2018 Dr Hilary Dyer
© Copyright 2018 Naomi Snelling
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