Saturday, 25 January 2014

Pathological Demand Avoidance

Pathological Demand Aviodance.
So I accidently came across a facebook page with PDA title. I flicked onto it for a very brief read, just out of curiosity. It turns out it is a form of autism. Along side, but not anywhere as well known as Aspergers. I looked into it more.
Main features...
  • obsessively resisting ordinary demands
  • appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
  • excessive mood swings, often switching suddenly
  • comfortable (sometimes to an extreme extent) in role play and pretending
  • language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
  • obsessive behaviour, often focused on people rather than things.
The description of 'a lightbulb moment' is not far from the truth.
My daughter resists every normal routine demand she can. From put shoes on, to get dressed, go to bed, have a bath, the list goes on. However, she normally only does so at home, something which I later find out to be typical of a PDA child.
My daughter has never mixed as well as other children, struggles to make friends and cannot play fairly.
My daughter has HUGE excessive mood swings. And always has done.
My daughter lives, mostly in her role play world. She gets very frustrated if you dont 'go with it'
I cant say I noticed a language delay, however, she chose not to speak to anyone much of her early years.
My daughter has obsessive behaviours. She is obsessed with her teddies, friends clothing and other issues.

The problem with PDA is that whilst it was first diagnosed 30 years ago, its only been recognised within the National Autistic Society for less than 10 years. And its not recognised within the NHS nationally at all. In fact, if you are lucky and find a peadiatrician who happens to know of it, you may get a diagnosis. If you dont, well, that just tough luck really.
I dont know if PDA is the correct diagnosis for my daughter. However, I do know its not recognised in this area. I also know its often misdiagnosed as seperation anxiety. (Yep, we already have that diagnosis) and Obsessive Defiance Disorder.
So the fight moves on. Now I have a suspected 'condition' that isnt diagnosed that my daughter may have.
I have written to my MP to get him to investigate the situation, he has forwarded my concerns to the East Berkshire NHS trust. Again, I wait.
I have started an e-petition to get this situation changed. Why should hunderds of families live with no diagnosis because the NHS fails them. Even if my daughter isnt PDA, it doesnt change the situation for hundreds of others.
Here is the link. If you have not already, please sign and share.
For now the fight goes on. I have written all I can for now. Updates will be regular. Along with ranting about the support situation.
If anyone wants more info on PDA, here are 2 links for you.

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