Wednesday, 27 January 2021

What is Pathological Demand Avoidance (PDA)?

Eleven years ago our youngest daughter was diagnosed with autism, and a few months later we stumbled across descriptions of Pathological Demand Avoidance. Since then I've been keen to 'spread the word' about PDA, to help both our girl and other families. 

I've published a short video on YouTube, answering the question 'What Is PDA?' and talking briefly about the main characteristics. It's only 6 minutes long because I think these days we all like to get our information as quickly as possible!


Ideally I'd have loved to be able to add subtitles to the video, to be more inclusive, but my tech skills aren't up to much. So instead I'm including a full transcript of my video below....

Hi I’m Steph and I’m mum of two girls who are now aged 15 and 13. I started to write a blog - called Steph’s Two Girls - over eleven years ago, on the day our younger daughter was diagnosed with autism. 

She was just two and a half at that time, so quite young. We hadn’t had any notable issues with her behaviour but her speech was slightly delayed. Autism did seem to fit in some ways, but in others she seemed quite different to other autistic children we began to meet. 

About six months later while I was browsing the Internet, looking for more help about why she did certain things in certain ways, I came across the words ‘pathological demand avoidance’.

It felt as if the descriptions of this type of autism had been written specifically about our girl. Everything fitted and that’s when I had what’s known as a lightbulb moment. 

I decided to help educate other people about PDA because knowing about it and being able to help her more made such a big difference to our lives.

So what is PDA?


There are six main characteristics of PDA.
 

Number 1 

People with PDA struggle with everyday demands, so they try to avoid them. Demands cause anxiety levels to rise, which can lead to overload. Not just demands that the average person might not want to do if they stopped to think about it, but a whole range of activities from difficult to easy, or boring to enjoyable. Simple tasks like brushing teeth, putting socks on, leaving the house, or school related demands like homework, or social demands like having friends, going to parties, having hobbies.
Pink and purple slide presentation with text 1. Avoids and resists everyday demands

Number 2

People with PDA can appear sociable and often seem to enjoy being with other people. But being sociable can hide a lack of understanding of social rules such as when to talk, what to say, how to act etc. Also, it may seem as if children with PDA don’t recognise hierarchy - so they think that rules apply to the other children but not to themselves.
Pink and purple slide presentation with text 2. Sociable but lack depth in understanding
 

Number 3 

People with PDA use what’s called ‘social strategies’ as part of avoidance. So that means there’s not always outright refusal to do something. Distraction techniques, like changing the conversation, sticking fingers in ears or talking nonsense might be used instead of simply refusing. Or giving excuses such as ‘my legs are too tired’ or ‘I’ve run out of energy’ is common too. It’s worth bearing in mind that this might depend on age or communication abilities though.
Pink and purple slide presentation with text 3. Use social strategies to avoid
 

Number 4

People with PDA experience intense emotions, mood swings and impulsivity – things can be great, until they’re not. Parents often express a feeling of ‘walking on eggshells’, not knowing what will cause the next upset. When PDA is better understood and fewer demands are used, this can help to keep emotions on a more even keel.
Pink and purple slide presentation with text 4. Intense emotions, mood swings and impulsivity
 

Number 5

People with PDA appear comfortable with role play and pretence. They often have great imaginations. This was a big indicator for us because Sasha‘s imagination has always been amazing. She did do a lot of role-play when she was younger and still does. These days she is constantly creating new characters and stories for a TV series. Some children pretend to be animals to avoid doing things which humans do (for example ‘cats don’t do homework’).
Pink and purple slide presentation with text 5. Comfortable with role play and pretence
 

Number 6

Obsessive behaviour is often found in those who have PDA, and this tends to be focused on people rather than objects. Many autistic people have intense and highly focused interests, often from when they are quite young. Trains is one such interest which people tend to think of when they think about autistic people. Pokemon is another - our girl can recognise and tell you everything about all 893 Pokemon characters. Or it might be something unusual like electricity pylons. But for PDA children the obsessive behaviour can relate to people. It comes across as wanting control of other children, or of their primary carer. But really that control is about managing away the fear or reducing anxiety. Because if the person with PDA knows what’s happening it means they are in control and that means the anxiety levels don’t rise so high. 
Pink and purple slide presentation with text 6. Obsessive behaviour focused on people

Extreme levels of anxiety


PDA is an autism spectrum condition, and people with this have extreme levels of anxiety. A phrase often used for those who have PDA is ‘can’t help won’t’, meaning they can’t help the fact that they won’t do something. It’s not a choice, it’s a need to avoid. 
What they are able to do depends on the environment as well as the individual’s own specific needs.
 
Our paediatrician originally used the word ‘oppositional’ when our girl was younger. PDA is not the same as ODD which is oppositional defiant disorder. 

I’ve written a blog post (The difference between Pathological Demand Avoidance (PDA) and Oppositional Defiant Disorder (ODD)) to explain the differences in more detail but in a nutshell ODD is not an autism spectrum condition whereas PDA is. 

ODD is about the child or adult not wanting to follow rules and directions but for those with PDA, underlying anxiety drives them to avoid the demands.

So that’s an introduction to PDA. If you’d like to know more about our personal story, or ways to help children with PDA, please watch my other videos and visit my blog website at www.stephstwogirls.co.uk or follow me on Facebook, Instagram or Twitter at @stephstwogirls.

The PDA Society has a fantastic website full of detailed information about Pathological Demand Avoidance and I recommend checking their News page out regularly. For more reading on PDA, I recommend several books in my post Books about the Pathological Demand Avoidance (PDA) profile of autism.



For more information about PDA, please read the book shown below: 
* this is an affiliate link and I may receive a small commission if you click and go on to buy anything. It won't cost you any extra.
Book cover for Understanding pathological demand avoidance syndrome in children, by Phil christie, margaret duncan, zara healy and ruth fidler

To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.


What is PDA (Pathological Demand Avoidance)?


Ten things you need to know about Pathological Demand Avoidance


Does my child have Pathological Demand Avoidance?


The difference between PDA and ODD


Strategies for PDA (Pathological Demand Avoidance)


Pathological Demand Avoidance: Strategies for Schools


Challenging Behaviour and PDA


Is Pathological Demand Avoidance real?


Autism with demand avoidance or Pathological Demand Avoidance?




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