Is the Autism Profile, Pathological Demand Avoidance (PDA), Recognised in Australia?
Recognition of Pathological Demand Avoidance (PDA) is very limited in Australia, and the current level of awareness of the condition is often inadequate for those seeking support for PDA.
Thankfully, awareness of Pathological Demand Avoidance (PDA) is increasing worldwide.
For the most part this is due to the tireless efforts of The PDA Society who campaign continuously to provide information, support and training for people living and working with PDA.
From their base in the UK they have curated a large range of PDA resources including translations of information about PDA into other languages, websites and Facebook Support Groups in numerous countries to grow awareness about PDA.
In Australia, the PDAANZ (Pathological Demand Avoidance Australia & New Zealand) group raises awareness for PDA, and has a number of useful resources available for those living and working with PDA in Australia.
A Brief History of Pathological Demand Avoidance (PDA)
While every Autistic person is different, sometimes patterns of common symptoms, characteristics, and likely behaviours emerge within the Autism Spectrum. These are known as behavioural profiles.
Pathological Demand Avoidance (PDA) is one such behavioural profile of Autism Spectrum Disorder (ASD). This profile primarily describes the extreme resistance or avoidance of ordinary, every-day demands and the use of social strategies or approaches that are social in nature as part of the avoidance.
The profile of characteristics and behaviours common to PDA were first identified by psychologist Elizabeth Newson in the United Kingdom as early as the 1980’s. However, the first peer reviewed paper on the subject of PDA wasn’t published until 2003.
The study of PDA is still in its infancy and researchers are learning more every day and updating and adjusting the relevant resources and strategies as they go.
More information about the history of PDA is available on the PDA Society website.
How is PDA recognised in Australia?
In 2018 the National Disability Insurance Scheme (NDIS) commissioned A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia from the Cooperative Research Centre for Living with Autism (Autism CRC).
It is a document intended to provide health professionals with a nationally consistent, step-by-step process to follow when diagnosing ASD.
PDA is very briefly mentioned in Section 12 in a table of ‘Special Considerations’,
Pathological (or Extreme) Demand Avoidance refers to a set of symptoms that can co-occur with ASD, and is recognised as a behavioural profile within ASD in the United Kingdom. It is typified by an avoidance of everyday demands and expectations to an extreme extent, and is driven by an anxiety-based need to be in control. Typical signs and/or symptoms include the resistance or avoidance of ordinary demands of life and the use of social strategies as part of the avoidance (e.g. distracting or giving excuses)A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia
The mention of PDA in this national guideline, as short as that mention may be, is actually an incredibly positive step towards increased awareness of, and support for, PDA in Australia.
It is a gift that those campaigning for PDA recognition in other countries are yet to be blessed with.
Can I get a PDA diagnosis in Australia?
Pathological Demand Avoidance is not a stand alone diagnosis. It is an Autism Behavioural Profile.
Yes it is possible to obtain a diagnosis of Autism Spectrum Disorder (ASD) with a PDA profile in Australia, BUT you will need to find a PDA aware specialist in order to do so. Unfortunately such specialists are rare.
So it’s important to remember that the primary diagnosis will be Autism Spectrum Disorder and an ASD diagnosis is the key to accessing government supports and the NDIS.
If you can’t find a PDA aware specialist for a diagnosis, then seek out an experienced ASD specialist who will be able to identify the ASD traits inevitably displayed by a person with PDA among the complex PDA behaviours that will also be present.
Why it’s important that PDA is recognised in Australia
PDA is a behaviour profile of ASD and not a stand-alone diagnosis. So why does its recognition matter so much?
PDA is an extremely complex behavioural profile. Lack of awareness of the condition has deprived people of an ASD diagnosis in the past and continues to do so today. In turn they are also deprived of the early intervention and support they need for positive long-term outcomes.
Furthermore, research has shown that common strategies used to support the more commonly known behavioural profiles of Autism such as Classic Autism and Aspergers do not work with PDA and may even be harmful.
So proper recognition and identification of PDA is important to ensure positive outcomes and prevent the years of frustration and trauma that can arise from a misdiagnosis.
You can read more about the benefits of understanding the PDA profile on the PDA Society website.
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