It never quite fit, the PDA autism label. It runs through our entire family, but my father and daughter’s behavior is much more extreme than the rest of us. I’ve been trying to figure out what exactly is going on for a long time. Online, when I was actually looking for something else, I found a description of autism with a PDA profile. ‘That’s it,’ I thought immediately.
You are probably also looking for an explanation for the behavioral problems of your child, yourself, or a client. Before you end up with PDA autism, you have often tried everything and you have the feeling that nothing works. If there is a lot of recognition when reading the features of the PDA profile, then you are in the right place. Welcome, here you will find information about what PDA autism exactly is and how you can best deal with it.
What is PDA?
PDA stands for Pathological Demand Avoidance. Loosely translated, this is Pathological Demand Avoidance. This is a profile on the autistic spectrum.
The official description of autism with a PDA profile is:
1. Individuals share characteristics of autism, namely:
Persistent problems with social communication and interaction and restricted and repetitive behavior patterns, activities or interests.
Often another sensory experience involving sight, smell, taste, touch, hearing and internal sensations such as hunger or thirst.
2. And have many of the key features of a PDA profile, namely:
resisting and avoiding the ordinary demands of life
using social strategies as part of avoidance
appear social (e.g. making eye contact) but this masks underlying differences/problems in social interaction and communication.
experience intense emotions and mood swings
are comfortable in role play, pretend play and pretend play
have an intense focus, often directed at other people (real or fictional)
have a need for control, often driven by fear or an automatic ‘threat response’
conventional approaches in parenting, education or support are not effective
This description comes from the website pdabelgienederland.org . They have taken the trouble to translate the information from the English website into Dutch to make the information more accessible. You can find more about this in the PDA brochure that has been translated into Dutch by pdabelgienederland.org. You can also print this out and/or forward it to care providers, family, etc.
Why a separate PDA profile?
If PDA is a profile on the autistic spectrum , why do we want to name it separately and not just call it autism? We especially want this because all standard approaches to autism in upbringing, education or support do not work for PDA people. So the well-known regularity, structure and predictability that benefits so many autistic people do not work for autistic people with a PDA profile. They benefit much more from an environment that focuses on trust, flexibility, collaboration, careful use of language and balancing demands.
How is PDA Autism diagnosed?
The EDA-8 is used for this . EDA stands for Extreme Demand Avoidance syndrome, which we know as PDA. The name EDA was proposed by The National Autistic Society and has been adopted by a number of researchers including O’Nions, Happé, Viding & Noens, the developers of the Extreme Demand Avoidance Questionaire (EDA-Q) and the EDA-8.
No diagnosis can be made because EDA (PDA) is seen as a behavioral profile. The EDA-8 is therefore a screening instrument to determine the level of EDA characteristics in children between the ages of 5 and 17. For adults there is the EDA-QA .
How do I find the right help?
There is no specialized PDA help yet, but that does not mean there is no help. If you need help with PDA there is no need to look for a PDA expert. What you need is someone who is open to PDA and the approach that goes with it. Customization is especially important with PDA. So you are looking for someone who wants to provide customized solutions, learn about PDA and work together to find the right approach. This is often someone who has experience with autism and fits the profile of a PDA counselor .
More information about fellow sufferers, websites, books, etc. can be found via more info .