Seeking a PDA Diagnosis
It’s quite common within the Pathological Demand Avoidance (PDA) community to hear about ‘the lightbulb moment’ that exists among many parents when, after racking their brains searching for an explanation for their child’s behaviour, they come across information about PDA that describes their child perfectly.
Following this lightbulb moment, parents naturally set out to obtain a PDA diagnosis for their child with the hope that this will lead to the help and support they so desperately need.
Those seeking a PDA diagnosis in Australia, however, can often come up empty handed after a visit to the specialist due to Australia’s limited recognition of the Autism behavioural profile known as Pathological Demand Avoidance.
Why is getting a PDA diagnosis so tricky?
Firstly, I think it is important to emphasise that Pathological Demand Avoidance is not a stand-alone diagnosis.
It has been identified as a behavioural profile of Autism Spectrum Disorder (ASD). Behavioural profiles are patterns of common symptoms, characteristics, and likely behaviours within the Autism Spectrum. Essentially, you must have ASD in order to have PDA.
ASD behavioural profiles do not appear in the current diagnostic manual for Autism (the DSM-V) and there is no requirement for any specialist to specify a behavioural profile when diagnosing Autism in Australia.
The best PDA diagnosis you could ever hope to get would state “Autism Spectrum Disorder with a Pathological Demand Avoidance Profile”, and this would be at the discretion of your diagnosing specialist.
Secondly, the very nature of Pathological Demand Avoidance makes it hard to diagnose.
Common characteristics of PDA such as good social interaction and communication skills, the ability to roleplay and pretend play, and skilled masking of Autistic traits means the PDA profile may not always ‘look like’ what many people think Autism ‘looks like’.
Demand avoidance in itself can be dimensional – varying according to a person’s tolerance for demands at any given time, or varying in different environments or with different people, for instance – so the presentation may be quite variable, unpredictable and confusing.
PDA Society Website
Consequently, children presenting with PDA are often misdiagnosed, or incorrectly denied an ASD diagnosis.
Thirdly, there is limited recognition of Pathological Demand Avoidance in Australia. While awareness is increasing, many practitioners are not on the lookout for PDA characteristics simply because they are unaware of them.
There are many sad stories amongst the PDA community of parents who have dragged their highly anxious PDA children to a specialist’s office to enquire about PDA only to be met with a quizzical look, or a bemused raised eyebrow, or (my personal favourite) a dismissive statement that “all Autistic children are demand avoidant”.
If PDA weren’t a rare and complex condition that requires careful and specific support for positive outcomes, perhaps it wouldn’t matter so much. Unfortunately, this is not the case.
What can you do if your child’s specialist won’t confirm a PDA diagnosis?
The key purpose of any diagnosis is to gain an understanding of the condition and to provide access to suitable services and support.
If your initial quest for a PDA diagnosis is unsuccessful, consider the following alternate avenues to gaining a diagnosis and/or support.
1. Seek a PDA diagnosis from a specialist who is PDA aware
‘PDA Aware’ is a term given to professionals and therapists who are aware of Pathological Demand Avoidance and open to discussing and even diagnosing PDA.
If you are seeking a diagnosis for, or clarification around, PDA then talking to a specialist who is PDA aware is a great place to start.
Volunteer PDA awareness groups in Australia go to great pains to maintain and regularly update lists of PDA aware professionals in each Australian state and territory.
You can find lists of PDA aware professionals here:
2. Focus on obtaining an ASD diagnosis
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 child with PDA among the complex PDA behaviours that will also be present.
While this may not gain you the full PDA diagnosis that you desire, a diagnosis of ASD is still correct and will open the door to government and NDIS supports, providing help for your family.
Ask around on PDA Facebook Support Groups to find good practitioners who have helped other PDA families with an ASD diagnosis and avoid specialists who say your child is too social or makes too much eye contact as these things alone do not rule out an ASD diagnosis.
3. Start implementing PDA strategies
If you have a long wait ahead to see a specialist, or a diagnosis seems out of reach, then the best thing to do is to start implementing PDA strategies with your child straight away.
Fortunately, there are great online resources that detail helpful strategies for supporting a child with PDA.
The PDA Society’s ambassador is the giant panda and the word PANDA also serves as a helpful mnemonic to remember the key PDA strategies:
Pick Battles
Anxiety Management
Negotiate & Collaborate
Disguise & Manage Demands
Adaptation
You can read about these PDA strategies in more detail on the PDA Society website.
If you start to see positive results from the implementation of these strategies, then you will know that your child may very well have PDA with or without a diagnosis.
The key to positive outcomes without a PDA diagnosis
On a positive note, I want to emphasise that positive outcomes for your PDA child are possible without a firm PDA diagnosis.
This is largely due to the indefatigable efforts of the professionals, charities and support groups who volunteer their time and energy to share everything they know about PDA in order to help others to hear and learn about it.
Parents of PDA children all over the world are becoming their own experts on the subject. They’re writing blogs and starting support groups in order to educate and further raise awareness.
At this point in time, the key to positive outcomes for PDA children is learning from others who are living with it.
The PDA Resource website is a great place to start.
Do you have any helpful information to share about obtaining a PDA diagnosis in Australia?
Share your comment below.
