Wednesday, 15 January 2014

Private Diagnosis..... How can it be Ignored?

Pathological Demand avoidance is apparently still an emerging concept, for us who live with it has readily emerged and is literally slapping us in the face on a daily basis! The problem is many of those working in direct contact with our children either haven't heard of it or know very little about it.

This lack of awareness makes it very difficult for us parents. Children who present with PDA are challenging and it is easy to see the behaviour with out seeing the underlying struggles. So many of us parents have been on parenting courses, despite the fact we are successfully raising other incredibly well balanced children ( in fact more well balanced than most as they live with PDA sibling). I believe it is true that you do not get to see many of the more "recognised autistic traits" until you have the PDA under control with behaviour management. Which is why to most behavioural difficulties is the first and only concern. What us PDA parents know is that typical behavioural management wont work and the Autistic related difficulties underneath will remain unseen and undiagnosed.

I am sure it is true for many parents that when we first heard about PDA it was literally a "eureka" moment. For the first time we had discovered something that truly represented our child. For us Isaac was diagnosed with aspergers and ADHD, as had our eldest son a few years before. In our naivety we expressed how different two children could be with the same diagnosis. What we know now is that this diagnosis is totally incorrect for Isaac. So as Isaac was traumatically failing in mainstream a SALT mentioned PDA, I read up and I knew from that instant that was him. BUT I was a damaged parent who had my parenting, life and family looked at by many who thought they could teach me how, with a bit more effort I could sort this child out. I mentioned PDA to other professionals in meetings, non of them had heard of it and I was literally told, there there love don't fixate on something that is unlikely. The anger I still feel towards these people is massive but I do intend to go back to each one of them with information in the run up to the next PDA awareness day ! As a result I was reluctant to put my head above the parapet and shout about PDA as it was not "professionally diagnosed". Last PDA awareness day I struggled to put the PDA aware logo on my personal facebook page as I was paranoid of looking like a Munchausen mum!!!!! this year we are still unofficially diagnosed but I damn well know what we are and I damn well know what "they" don't!!!!

So coming back to diagnosis....... still not got it....yet!!! What I have now got is agreed funding from the clinical commissioning groups to fund a diagnosis at the Elizabeth Newson Centre in Nottingham. I was refused first time round but I wrote a long essay on PDA and related it to many aspects of Isaacs life and struggles and the second time of asking they have agreed to fund the private diagnosis. I don't know if it will be PDA but if it isn't I will run naked through Hull with chip spice tied to me (its a Hull thing!!)

So two days ago I had an apt with a psychiatrist from CAHMS re Isaac. I don't take Isaac as it is too stressful for him. It is actually regarding medication but as Isaac doesn't currently take any it is a bit of a waste of time! Isaac has been on the emergency psychology waiting list for over a year and has not yet got an appt. In a much appreciated frank expression from the Dr he said he doubted if CAMHS would even exist very soon as he thought caseloads would be outsourced to private companies and during the disintegration he had no idea where this left Isaac on the list to be seen. I asked the Dr if he knew much about PDA and he said no, as it was not recognised in their assessment criteria.  I then explained to him from a parenting perspective the management differences between aspergers and PDA. I stressed that a diagnosis of high functioning autism was a spectrum within itself required totally different and specific management. Now I had the confidence to tell him that I strongly believed my child had PDA and I did not feel like a paranoid neurotic mother doing so! I did not mention to him that I had CCG funding to Elizabeth Newson Centre but he suggested to me that I could look for a private diagnosis. I then asked him that if CAMHS did not see PDA as a diagnosis what good would my private diagnosis be? At this point he shrugged his shoulders and said he did not know!!

So the CCG are funding a private diagnosis as they see it is in the best interests of my child but when I take the trust funded private diagnosis back to the trust they wont recognise or act upon it. Errrrm, is it just me or does this not add up???? 

I now realise I have some questions to take back to my Trust and with the forth coming PDA awareness day I feel ever more empowered to do this. Seriously, we really need to stop this miscommunication and all sing from the same hymn sheet. Come on PDA awareness... lets bring it on!!!!


  1. I agree with all of this. As parents, why would we bother making all of this up and making our lives more difficult?! I still feel massively grateful that we have a sibling who is not on the Spectrum, as that does help prove to me that it's not my fault OR my imagination. Bring on the awareness indeed, am right beside you :)

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