Hello helpyou,
Very happy to chat any time - if you'd like, we could talk over the phone too.
Are you in the UK? Here's how our diagnosis came about, it might help you to hear about the whole process:
I first thought ds might have something a bit "special" when an adult close relative of mine was diagniosed with Asperger's. Cold shiver ran down my spine and I thought "Oh shit - I think this is what ds has too". They are v similar, and I can remember what my relative was like at this age - ie THE SAME. Ds was then about 3 but I tried to shelve the idea for about a year in denial/hope. It wasn't till he started school that I really had to face up to something being up with him.
I then got a letter written by my health visitor, who was brillant, to a consultant paediatrician asking for an appointment. Tthe consultant met with me and ds and gave him a working diagnosis on the spot. And we took it from there, through the hospital route, rather than school. I've found that a much better way, as a letter from a consultant paediatrician seems to cut more ice.
Since then, the school has been reasonably helpful but insist no point in even trying for a statement as ds not nearly bad enough. They did organise for the ed psych to see ds on three occasions. She was the one who did intelligence tests on him and found out that he was in the 97th and 99th centile for verbal and non-verbal reasoning. She's said to me he might genuinely not have Asperger's but just be looking at the world in an unusual way given the intelligence he has.
However, I've found it very very helpful to think of him as having Asperger's because:
A The ASD strategies seem to work with him
b Sad but true, I "mentioned" his Asperger's to some of the more tutting and judgemental mummies at the school gate. It has meant they have stopped giving me the evils when he is kicking off on one.
I was v v upset for about a year after the diagnosis. But I feel much better about it now. I have to admit that it was immediately a help in how to deal with ds. At 4/5/6 he was - looking back - really unmanageable and a huge parenting challenge. He is now much much easier to cope with.
If any consolation, my lovely consultant says he thinks of Asperger's as more a personality type than a medical condition. He said, very sweetly: "People with Asperger's are very focussed and driven and often go on to do very well in life. Several of my colleagues have definitely got it."
I spend money on childcare just to give us all a break - so ds goes to our local day nursery one or two days a week for tea until 5.30pm after school. It makes all the difference to the rest of the family and our often shredded nerves. My mum too has ds for occasional respite weekends when we are all getting completely frazzled.
One thing I haven't done is get involved with the National Autistic Society, but they have lots of information days etc. I've preferred to read about Asperger's and implement ideas myself and with dh. But I've heard very good things about them.
Chin up, I can honestly say that at nearly 8 and after now three- to four years post-diagnosis, ds is a zillion times easier to handle than he was.