April is an interesting time for Autism. There are several campaigns happening for ‘Autism Awareness,’ like the ‘Light it Up Blue’ campaign.

However, autistic individuals have spoken up against April Autism Awareness month, as many of these campaigns have been created by non-autistic-led organizations who present their own idea of what autism can look like without regard for actually autistic experience.

Some autistics also believe that April should instead be deemed Autism Appreciation month, while still others believe April shouldn’t be related to autism at all.

No matter what you call it, April seems to be a time that we discuss autism and, in recognition of this, I want to discuss a particular profile of autism that has been recently recognised called Pathological Demand Avoidance or PDA.

First things first, what is demand avoidance?

The term demand avoidance sounds pretty self-explanatory avoiding a demand. However, when you look at this concept through a neurodiversity lens, the definitions of demand and avoidance change significantly. 

A demand within this context can be something like a deadline for a project, a responsibility to a friend or similar. But it can also describe things like feeling hungry, tired or thirsty. And everything in between! That paints a very different picture of demands, doesn’t it? Demands are EVERYWHERE!

Then there’s the avoidance. Again, simplistically this can look like procrastination about a task by scrolling on social media rather than doing the thing. But avoidance within the demand avoidance feature of neurodiversity actually presents as the flight/fight/freeze/fawn response. 

To some extent, everyone can struggle with demand avoidance to this extreme – feeling anxiety and wanting to run when trying to finish a project for example. But it’s the extent this impacts your life that matters in regard to this framework. Think of it like this: in an individual struggling with intense demand avoidance, demands are everywhere from the moment they wake up and each and every demand can automatically trigger an intense reaction of anxiety. This has a tremendous impact on how this individual experiences life compared to someone who gets only gets anxious from having to deliver a speech or similar.

Recognition of the PDA Profile of Autism

In the recently released Autism CRC’s 2023 National Guidelines for the Assessment and Diagnosis of Autism and Diagnosis of Autism in Australia with endorsement from the National Health and Medical Research Council, Pathological Demand Avoidance (PDA) was recognised as a behavioural profile of autism.

PDA is not a stand-alone diagnosis and will not be included in the DSM or ICD. PDA is also called Pathological Demand for Autonomy as another way to explain how PDA presents and feels. 

Why does this matter?

If an autistic individual experiences PDA, it helps explain how they are experiencing the world and what behaviours we can observe confirming that. It gives the context and reason for the behaviour, rather than placing the blame of the behaviour on the individual themselves. In other words –  behaviour is communication and PDA can help explain what that individual is trying to communicate.

Plus, as I’ve said in the 2e Corner before, in my opinion, a label means power – the power to find both your tribe and your resources. For gifted and/or neurodivergent children, an individualised and responsive approach is considered best practice for support. Having this label recognised allows for creating a more suitable approach to support the individual.

For more information on PDA check out:

• The PDA Society – they are based in the UK but provide amazing resources.
   

• Both Kristy Forbes and Christina Keeble are autistic Australian neurodivergent consultants based in Victoria with passions for discussing PDA. You can find them on their websites and on Facebook and Instagram where they both blog and share resources.
   

• Pathological Demand Avoidance Australia and New Zealand

With best wishes,
Sabrina, author of the 2E Corner