I'm certain my daughter has PDA, where do I go from here??

[mummyloveslucy]

Hi I've only recently found out about PDA through another parent. I've researched it was like reading a book about my daughter! She is 9 years old and also has a learning disability. We've thought there were autistic tendencies from the age of about two, but because she is sociable and shows empathy, the specialist ruled it out. These demand avoidance, needing to be in control kind of behaviours and pretend play/ fantasy completely dominate her life, and mine.
She has a full time one to one at school, but is genially very good at school, then explodes at home. If we had a diagnosis, it would help everyone understand her better and we'd know how to deal with it all better.
We've refused to see her Paed again as she is just awful. Is there anyone else we could see, even if it's private? Where could we go from here? And how do we go about getting a diagnosis?
Thank you.

[notapizzaeater]

Depends where you live, certain areas do not recognise it at all (huddersfield being one)

We also think my ds has it but can't get "the label" as we don't recognise it

[Ineedmorepatience]

www.pdacontact.org.uk/

Have a look at this MLL

[mummyloveslucy]

Thank you, that's brilliant. I'll read that later.

[notapizzaeater]

Their are a couple of Facebook groups about PDA which has lots of help.

[Jacksterbear]

My ds has a dx of ASD with a PDA profile from the Elizabeth Newson centre. We went privately (via referral from a private paed) although I understand it is possible (although difficult) to get NHS funding for assessment there.

On the NHS, we have the agreement of both CAMHS and the CDC that he shows symptoms of PDA but no formal NHS dx (yet).

[mummyloveslucy]

Thank you, I'll try through the NHS but might have to go private. It'll be well worth it to get a proper dx and learn how to manage it.
I'll have a look on facebook too.

[Jacksterbear]

Can't work out how to link to a FB group but the one I'm on is called "PDA (pathalogical demand avoidance) UK Group".

Also, have you read the book on pda by Phil Christie? Lots of management techniques in there.

[Jacksterbear]

And here is the first in a series of YouTube videos which are really useful (there are about 9 in total - you'll be able to find the subsequent ones from the first one).

[HaveAcuppa]

Someone mentioned PDA to me last month whilst I was expaining difficulties DD has. She has a statement and diagnosed with lots of different difficulties, all still a big jigsaw that cannot be completed. In my area there is no support for even dyspaxia diagnosis or auditory processing, been told by OT who then discharged that she is likely to have these, and I am certain that she does.
The more I read about PDA, is like reading about my DD who is 13. I would be interested mummyloveslucy how you get on.

[SilkStalkings]

Luckily it was our paed who mentioned PDA to us as other ASDs weren't quite right but then the local autism panel refused to assess. I wrote a strong letter back point by point explaining why they were wrong or didn't understand the problem and they invited us in to chat and meet him. They don't recognise PDA here but agreed to assess - I said I didn't care what the DX was I just needed proof there was something innately awry.
They did the assessment and said he was autistic anyway, with or without the PDA. Because I was concerned that teachers etc would assume they could treat him to a standard ASD model (PDA needs a whole different set of skills), they officially DX'd him as 'Atypical Autism with traits described as PDA by Dr Elizabeth Newson.'
HTH - sometimes you have to work out what you want and negotiate down to what you need iyswim. You also have to be able to pull off a Margaret Thatcher impression so they realise you're not going away.

[SilkStalkings]

NB you would never guess he was autistic, you would just think he was a Jeckyll & Hyde type monster. He looks to all intents and purposes like a child who has been through some horrible trauma or is being abused. Unfortunately the trauma is the ongoing demands of real life as everyone else knows it. When he's relaxed and things going his way he is a very kind and sensible little sweetie.
Get the Phil Christie Book to understand PDA and The explosive Child by Ross Greene to work out how to handle them. You need to stop doing regular parenting (siblings benefit from this too) and stop seeing your kids' behaviour as a reflection of you.