General Non-Fiction posted December 22, 2016 Chapters: -Prologue- 


Pathological Demand Avoidance

A chapter in the book A Word in your Ear about PDA

Introduction

by fairydancer

PDA, Pathological Demand Avoidance syndrome, is a rare form of Autistic Spectrum Disorder (ASD.) It was first identified by Dr Elizabeth Newson in the early 1980's, in England.

PDA is a lifelong condition which requires very different strategies to be used by care-givers, than for its more well-known brother, Asperger's syndrome (AS.) This is because PDA is very different from AS, although both are caused by the same factors, including genetics and environmental factors.

In fact, PDA and AS are virtually opposite ends of the spectrum in certain traits. For example... People with ASD people struggle with social interactions, because they lack the skills necessary to be able to interact "neurotypically." However, whereas people with AS TEND to avoid social interactions because of this, people with PDA TEND to be overly friendly, and desperately want friendships, even though they find it hard to maintain them.

Example 2... People with ASD struggle with anxiety, because they lack the skills they need to not be anxious. However, whereas people with AS TEND to need structure and routine to help overcome this anxiety, people with PDA TEND to avoid the expectations, rules, and demands of everyday life.

This book will, I hope, help people to understand what PDA is, how it affects sufferers, and their families, and how it can be managed, initially by care-givers, and eventually, by the sufferers themselves.

My eleven year old son was diagnosed with PDA in May 2015, two months after the British "National Autistic Society" officially recognised it as being part of the Autistic Spectrum.

That is also when I fully accepted that I too have PDA. This moment of acceptance changed my life forever, as it had a very unexpected side effect -- my self-confidence went from the floor to the ceiling in a split second. All my life, I have struggled with my self-confidence, but over the last twenty years I have kept trying different ways of boosting it, but nothing has truly worked. In fact, I had reached the point where I was questioning WHY does nothing work? That was the point at which I finally received my answer.

So, why did this moment of accepting I have PDA change my self-confidence? Because now, finally, I had the REAL answer to my life-long question "WHY do I do such stupid/inappropriate/un-socially acceptable things?" (And WHY do I keep repeating them over and over again?)

...NOT an excuse, but a real REASON.

I do these things because I think differently, because my brain formed differently, due to the fact that I was born with PDA.

So, finally, I can now cut myself some slack! I can understand myself better, and therefore, FORGIVE MYSELF, and, plan better for the future.

Life over the last two years has been an absolute roller coaster of emotions, and changes, and believing in myself and my son.

I have had to change the whole way I parent my son too. I have had to push so far away from "conventional parenting" strategies that my own family and partner have struggled to keep up with it. In fact, they have not. I have had to not only push the frontiers only recently carved out by the British PDA Society, but also, try to maintain my own strength and resolve against huge odds. But, I would do it all over again for my son.

I LOVE my son.

And I have been hit, punched, spat at, kicked, pushed down the stairs, screamed at, sworn at...

This is PDA. Welcome to our world!

I LOVE my son because he has a heart of gold. He is clever, funny, loving and beautiful.

He also has PDA. This can make him not be the person he wants to be, sometimes. This is NOT his fault.

Did I say funny? He is utterly hilarious! His sense of humour is astounding. And, finally, there is another person in this world who TRULY understands me.

I truly hope this book will help you understand us both too, along with the at least 9,000 other PDA sufferers in the UK, and the hundreds of thousands, if not millions, of sufferers, worldwide.

Thank you for reading.




Thank you to Dick Lee Shia for this beautiful artwork.

https://www.youtube.com/watch?v=QwtkzBoY01M
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