PDD-NOS does anyone else have this diagnosis? help/advice please

[steph007]

Hi,
my girl has seen a paediatrician once last month and autism was suggested. we go back for our next appointment this week. I've read a few books on it and keep changing my mind as to whether she has it or not.... in some ways she is no trouble at all, and it really is only her lack of speech development that stands out. She is fine emotionally and with people she doesn't know very well, so I'm wondering if she has PDD-NOS. But then I'm scared to suggest it in case that means she gets no statement and no help at all in school... any advice/thoughts?!
thanks

Hi Steph.
I'm not in the UK but my understanding is that PDD-NOS is not really a diagnosis given out in the UK anyway - more of an American thing.
My son probably comes under that banner, but he's been given a diagnosis of Aspergers, and actually I think its more like high functioning autism. His problems are mostly speech related.

Its easy to get bogged down in the terminology (I know I have) but worth trying to focus on getting her as much help as you can, whatever the label.

...i'd be cautious about mentioning specific dx to professionals. They like to make their own mind up about that. What you could do if you haven't done it alreday, is write down some notes about her development history, the delays you have noticed she has, anything that worries you,...
My DS is 4, going through the long winded dx assessment route since last april when paed told us her opinion was that he was on the mild end of the spectrum. My ds has a significant speech delay but he is now making nice progress. He also has other delays, his social skills and play are not age appropriate, his interaction with peers isn't either (he still does mainly parrallel play),he also has sensory issues and many challenging behaviours with eating, bathtime, nail cutting,... My own opinion is that he is indeed on the spectrum, but that he doesn't neatly fit an autism dx, so i tend to think along the lines of pdd-nos. But there are no way i will be suggesting that to the professionals who deal with him.

How old is your dd? Is she getting salt? or any other help atm?

PDD-NOS simply means something is amiss but noone is quite sure what.

Have never understood why this can't just be stated.

Actually, DS4 was verbally re-diagnosed last week with PDD-NOS...

First paed appt, he said "he [DS4] is autistic, and its very unlikely he will live an independant life, he will never move out"

I totally disagree with that statement BTW, I have every confidence that he will be EXTREMELY independant.

the second appt, DS4 got "downgraded" to ASD

And then the third? well now apparently he has PDD-NOS. In fact I am 110% certain that DS4 has Aspergers.

so, (sorry for the ramble) it seems that PDD-NOS is diagnosed here (in england!) but i suspect that the paed will have changed his mind again when we meet next.

Hi genie,
thanks so much for your post, that's a really good point and I'm glad I asked this before our next appt! You're right, I'll leave it to the professionals to decide....
my DS is 2 years 8 months, but sounds v similar to your son. Mild is how I would describe her. But something obv wrong with the speech. Wish I could retrain myself to understand it all and be some help! SALT has been approved but takes 6 months to start round here - a long time!

Hi Steph - I feel similar to you My DD (3.8)only has a few tratis (I feel anyway) - mainly with language- her speech is disordered rather than delayed - she is still getting her I, my, and You pronouns mixed up but has improved so much over the past few weeks. She seems to be learning her speech in phrases which she has heard rather than using original thought. She still has echolalia but that is diminishing. Her social skills with her peers are very poor. She is now sometimes happy to be led but cannot initiate any interaction or conversation with her peers. She has no problems being around her peers or adults though. She likes routine (but I thought most toddlers do) but is not ruled by it so if something changes she is usually fine by it she may whinge for a few seconds but she certainly does not tantrum on end. Only thing she is not too happy about is visitors to our house - then she cries a lot. Her imaginitive play is behind too but I would call it more unusual for example she used to talk to her bricks and pretend they were telebubbies rather than build with them! Anyway, I could ramble on all night! DD has been given a ASD diagnosis where as I feel it is probably more PDD-NOS but like Moondog has mentioned I don't think they tend to use that diagnosis much in the UK - I'm not sure why. From my experience professionals seem to give a general ASD diagnosis which I suppose you could say encompasses the whole spectrum including PDD-NOS.

I always thought pdd/nos was another name for atypical autism. which basically means you took, most but not all of the triad of impairments. This label isn't really very helpful and I do think that a general asd dx would be more useful as at least it would direct people working/helping your child in the right direction.