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Wednesday, 18 March 2015

This is Our PDA Story (week 9)

Welcome to week 9 of 'This is our PDA story', where I've been asking other families living with PDA (Pathological Demand Avoidance) to share their thoughts and experiences.

This time it's the turn of another mum to a young girl with PDA, and she is talking about the unpredictability of PDA. For more of her thoughts and words, please do visit her blog Bean Soup which covers many different situations.




A Week in the Life of PDA

Steph asked me to share my twopence worth to her wonderful “PDA in the spotlight” section of her blog.  We agreed on something along the lines of a typical week living with PDA.

I sat down to write. 

I realised that there is no typical week.  There is no typical day or hour and every time I think there might be…it all changes on the flip of a dime!

You see, my experience of being a ‘PDA parent’ is that you rarely reach a plateau of predictability such as you might do parenting a child with a more typical form of autism.  My daughter’s original diagnosis letter states “Pathological Demand Avoidance Syndrome: a-typical Autism Spectrum Condition” and we learnt fast the a-typical bit!!

That is what makes PDA kind of like Autism on some form of mind-altering drug in my humble opinion!  It takes many of the typical autism traits and fires them out randomly. 

For example, just yesterday, my daughter (Bean) was ever so tired and emotional (not necessarily PDA-related, she is five, five year old girls bring that to the table sometimes, don’t they, but her responses were violent and controlling to a degree that would be considered above and beyond appropriate for her age!) and nothing I said or did was ‘right’ in her eyes. 
I was making her tea and despite it being her very favourite meal that she herself had requested that morning, it was all “wrong, wrong, wrong” even the sound of my voice, the way I looked at her, her brother’s breathing, her dad being near her. 
She had attended a weekly ‘forest school’ session at school that afternoon and she is generally challenging/emotional/angry/anxious in the three days leading up to it and the evening following it.  So it was expected and I reserve favourite dishes, special books, novelty/new items such as pens, trinkets, stones I’ve found in the garden etc for Tuesdays.

It was going as it generally does on a Tuesday (oh, maybe there is a typical day evolving here!): involving a lot of patience, calm, fast-thinking, routine and being as available as I can be on my part with a lot of tears, anger, hitting and volatility from her, both of us trying to navigate through the myriad of emotions and responses.
Then we received a call from our neighbours to ask for my husband’s help with delivering a goat kid and instead of this out-of-the-ordinary event upsetting the apple cart further, it completely twisted the situation on it’s head dragging a instantly happy, easy-to-please, compliant five year old girl with it! 

The child went from screaming at her father to stop looking anywhere near her to subsequently spending the following half an hour outside tending to baby goats next door followed by a walk around our own farm checking on animals with him.  She then came inside happy for Dad to help her get her ready for a bath (something she usually refuses to allow), chirpy, amiable, a downright pleasure to be around. 

Granted, food consumption may well have helped the situation (lord knows I can be a troll when I’m over-hungry!) but essentially, the challenging behaviour that is so indicative of PDA can vanish/appear in the blink of an eye at times and that is what makes it so tricky to manage and support.

Something about my daughter that continues to surprise me is that she struggles to cope with changes in routine at times or for periods of time yet positively thrives on novelty and new experiences at other times and I have no bloody idea what reaction will be brought to the table at any given time.  It’s as confusing as it is complex but somehow I kind of relish the challenge.  I myself thrive on a sense of ever-changing, having Bean in my life affords me the opportunity to never get stuck completely in a rut, to always have to think ahead of the game and outside of the box.  Her needs can be 24/7 and while we try to promote a sense of empowerment to live with and, indeed, overcome her challenges, it is an intense process and one that can be suffocating and exhausting.

Bean’s PDA, nay, parenthood per se, takes me to places I never knew I had let alone could cope with at times due to it’s sheer unpredictability and volatility (driven largely by acute anxiety) but at the same time I am learning all the time, at a speed of light at times, ensuring that my experience of parent-child relationships is truly a mutual learning experience*!

*Disclaimer: This sentiment is written with a slight (and extremely rare) hangover which I wonder is making me view the wondrous challenge of parenthood with ever so slightly rose-tinted glasses!!  Perhaps I should add a footnote of: “Granted, there are days (or weeks!) when I consider having gin for breakfast!”


In short, there is no such thing as a typical day for us here at Soup Towers at the moment except for the fact that each and every day we prepare for the unexpected and carry a toolkit of distraction techniques in our pocket along with a good deal of diplomacy and patience…and a cupboard full of gin and chocolate!

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As always, please do leave any comments of support below as they are much appreciated.

For more reading, and different experiences, please check out previous weeks in this series by clicking below:



Please do also visit the website for The PDA Society where there is much more information, and also www.thepdaresource.com.

Linking up with the lovely Jenny from Let's Talk Mommy for #ShareWithMe.



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