Follow up apptmt at CDC, have private ASD dx, what to ask for / expect

[Jacksterbear]

I'll try to be concise! DS is 7.5. His assessment/diagnostic history is as follows:

June 2013 private neurodevelopmental paed dxed SPD and anxiety. Conducted 3di interview; concluded he did not meet ASD criteria but acknowledged tests designed to pick up typical autism and referred to Elizabeth Newson centre for 2nd opinion re PDA.

Aug 2013 NHS SALT assessment - scored very highly.

Sept 2013 saw NHS community paed - agreed with SPD & anxiety dxes; concluded (on basis of informal chat / observations) that did not meet ASD criteria but did show symptoms of PDA.

Oct 2013 assessed at ENC. Their report concluded ASD with a PDA profile in addition to the sensory and anxiety problems. Included S&L assessment which showed profile consistent with ASD.

Dec 2013 seen at CAMHS. They discharged him on basis of their conclusion that his profile strongly pointed to ASD/PDA, and not a separate MH condition, as the cause of his anxiety.

We have now received a follow-up appointment at the CDC and I'm not sure what we should be asking for. Further assessment for ASD and/or a rubber-stamping of the private ASD dx?

I still feel confused and at sea over the conflicting opinions we've had and would like a consensus! Also, although school haven't openly doubted the private dx, I can't help feeling that an NHS one would carry more weight, now and in the future (and would get rid of my paranoia that people are thinking "well if you pay enough money you can always get someone to give you a dx").

I don't know if a consensus is going to be possible because from what I can see and what I've read and from talking to the ENC, his presentation is not very typical and is in parts very subtle. Am I chasing an unrealistic goal?

Sorry that was a bit of a ramble after all! Any thoughts welcome.

Hopeful bump.

Thanks Polter. I suppose it's mostly peace of mind I'm after. He has had private OT assessment and sensory diet so we're good on that front. I don't think further assessment is necessarily going to help us find out anything more about him or how to help him. If NHS paed says again that they still don't think he meets ASD criteria I'll feel pretty confused and lost. Especially now we have told him he has ASD and started to talk to him about it.

Argh. Sorry more rambling!

Phew. Appointment went well. DX accepted without question, referral to autism outreach team and re-referral to CAMHS being made, sleep diary given and melatonin to be discussed at next appointment if sleep strategies fail.

So so relieved. Had been terrified that paed would dismiss, disagree with or show scepticism of the private dx, which would have thrown me into a complete tailspin, having just got my head around it!

Also, interestingly, DS kicked off during the appointment (got upset when I was describing some of his behaviour, thinking he was being criticised/told off, starting shouting, kicking furniture, then hid under a chair snarling and refusing to come out) - first time he has been anything other than calm, polite and charming in the presence of a medical professional! Felt so relieved tbh to have it witnessed!

Ah, yes, this paed's previous report was full of "parents report that..." And although school have seen the full extent of his behaviour, their letters to the profs are full of bland understatements eg "gets distressed", which don't really convey the full picture!

Glad your assessment was useful too.