PDA stands for Pathological Demand Avoidance
Or as many in the autistic community prefer, a Pervasive/Persistent Drive for Autonomy.
It is a behavioural profile of Autism.
PDA was originally identified in the 1980s by Elizabeth Newson. She identified a group of kids that didn’t quite fit the DSM-IV categories for Classic Autism, Asperger’s or PDD-NOS (this is where they previously ended up because it was the closest fit).
The PDA Society UK have an excellent documents titled “Identifying & Assessing a PDA profile – Practice Guidance” which can help distinguish PDA from other presentations of marked demand avoidance.
PDA is not listed in the DSM-V as a stand-alone diagnosis.
PDA has been officially recognised in the Autism CRC’s National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in Australia.
“A client may avoid demands and expectations in everyday life to an extreme extent. Rather than being viewed as the client being oppositional or defiant, practitioners should consider whether the behaviours are instead driven by an anxiety-based need to be in control. Pathological (or extreme) demand avoidance refers to a set of characteristics that can co-occur with autism and is recognized as a behavioural profile within autism. This profile is also referred to as persistent drive for autonomy, emphasising the function the behaviours serve.”
PDA Characteristics (as described by The PDA Society UK)
PDAers might…
•Avoid every day demands e.g. dressing, bathing, eating, toileting, leaving the house etc.
•Use social strategies as part of avoidance e.g. politely declining, distraction, negotiation, making excuses, physical incapacitation, withdrawing into fantasy.
•Appear sociable, but lack some understanding. They have a tendency to use eye contact and have reasonable conversation skills which can mask underlying difficulties.
•Display intense emotions and mood swings e.g. difficulty with emotional regulation, impulsivity and unpredictability dependent on where their tolerance levels are at.
•Seem comfortable in role play e.g. taking on the persona of an animal, communicating through pretend play or using fantasy as an avoidance strategy.
•Focus intently on other people. Sometimes their ‘restrictive, repetitive interests’ are people orientated.
•Have a need for control which is driven by anxiety or an automatic ‘threat response’ in the face of demands.
•Have a tendency not to respond to conventional approaches in support, parenting or teaching. In fact, they can make things worse.
What this list of characteristics doesn’t capture is the amazing strengths of our PDAers:
•They are self-directed learners and have extraordinary memory.
•They have unique thought processes and can come up with outside-the-box solutions.
•They have a strong sense of justice and will stand up and advocate for others.
•They are expert negotiators and problem solvers.
•They can be incredibly charismatic and charming, have this hilarious sense of humour and endearing mischief.
•They have a strong moral compass, are not easily manipulated and won’t blindly follow societal conventions that don’t make sense.
What has helped our family:
(of course, this might not be true for all families of PDAers)
•“Kids do well if they can.” Dr Ross Greene. Everyone wants to do well. Our kids aren’t going out of their way to be intentionally defiant or naughty or aggressive. If our kids aren’t doing well there is a reason.
•Behaviour is communication. The beahviours that we see are an autonomic nervous system response and are communicating to us that their nervous system isn’t coping.
•PDA kids have highly sensitive neuroception, the subconscious surveillance system that detects whether we feel safe or under threat. It is our job as parents to create environments where our kids feel truly safe, at a nervous system level.
How do we create safe environments?
(again, this is what works for us and our PDAer)
•By building trust and connection.
•By accommodating sensory preferences.
•By eliminating as many demands as possible.
•By setting up our week to include sufficient rest and recovery time.
•By using Declarative Language.
•By intentionally creating opportunities for our PDAer to engage in regulating activities.
•By providing as much choice, control and collaboration about the things that impact our PDAer.
•By tuning in and recognizing the subtle early signs of escalation and diffusing situations before they reach the point of a meltdown.
•By being selective about the situations we place our PDAer in and ensuring that they match his capacity.
•By exploring alternative schooling options.
•By utilizing parent education sessions rather than face-to-face therapy sessions. For us, the energy cost of getting to therapy outweighed the benefit of face-to-face appointments.
•By considering the whole family’s needs when generating sustainable solutions.
If you need more guidance, I can support you in 3 ways.
For all caregivers:
My PDA for Parents, on-demand, online course provides 3.5 hours of information that you can work through at your own pace.
For mums:
My Mums Who Get It Program is a 10-week online education and support group for mums of Autistic PDA kids.
For professionals:
My PDA for Professionals course is a 2 hour CPD webinar suited for all professionals supporting families of Autistic PDAers.
