Jayzmummy, some of your problems sound familar to me too!
Sam was born small after Hyperemesis and Pre-Eclampsia (he lost a pound in utero apparently), then his trace during labour showed heart irregularities, but my blood tests had been lost and so no anaesthetist would attend. Obs were all busy. Sam didn't grow, instead he got down to 4lb 4oz before we tried soya milk (couldnt get a referral) and he flourished- now know after five years he is lactose intolerant.
We had behaviour prbs with Sam until he went to playschool, then it went quiet and we thought he 'grown into his skin', until I went to visit the group and actually he was running it- telling them their routine, what to do, picking on the other kids. Health visitor decided to refer to paeds as we had other worries still. Got a home visit by the community assessment team who filled in forms, etc. Then told me that they couldn't provide me with a diagnosis until they had confirmation of his problems from another agency. We gave them address of playschool. Playschool wrote and told them it was our parenting- they had long been funny that DH and my Mum did the childcare whilst I worked, they catered mainly for income support famillies and just couldn't get it. So end of paeds for us. We put Sam in a Montessori nursery, which helped a LOT.
Anyway, about a year later Sam started school and immediately flew! Reading, maths- the lot. Except socially. Eventually, by last term we were called in to be told school just couldn't do anything with him during unstructured time, although in class he was A1. I knew this I guess, I'd been having this problem for years. So I took Sam to doctors last week and old Dr i've known forever flicked through the file and said 'ah yes I see- we had a letter from community assessment before, they were sure he ahd Aspergers, but without back up'...
Except, now we have back up don't we? So Sam isn't EXACTLY diagnosed- due to a technicality I guess- but we have been unofficially told the outcome. We know we need help; Sam responds less and less well to me, perhaps because he is being really badly treated at school by female teachers (has to sit at back despite visual loss with kid who has dyspraxia and wets pants a lot, that sort of thing). I've done every AS test I can find on Sam, same result every time, every symptom too. As he gets older it becomes easier to see that what I thought of as emotional intelligence was really intelligent language- he has no concept of emotion in other people, or really of differences between people (especially status). He is obsessed with junk modelling and aliens, he is SO literal, sleeps little, hoards old food (yuck!) in any place he can, NEVER plays role play games. He is also quite aggressive and has become hard to take anywhere, although I have understanding friends. There was an attempted child snatching in a local restaurant last week, and I know of at least another two suspicious attempts in the same time frame, so with his behaviour I just can't go out the house unless DH is with me. Sam cannot socialise with his own age at all, adults and little kids only. His brother who is 13 months younger hs a horrid time of it! But he doesn't get the concept of reward charts, and he just does not feel guilt.
I am going to go see the school SEN on their return, she is not even aware of Sam despite repeated conversations with his teacher and the fact he has only 50% vision. I heard she was surprised when a friend mentioned his name, in that the teacher had never introduced her.
I know the school will back me up this time, and I am keen to get it sorted but I think dh will take a LOT longer! My Mum and MIL too, they only see the Sam in an environment where he is stimulated kid, or the Sam interacting with adults kid. My Mum just say 'well, what are you doing to him at home then?' every time I say anything! Dear Mum!