Hi--I'm very happy to have found this group! I have a three year old son and we have been on a diagnostic journey since he was about 18 months old. It's pretty clear at this point that the verdict is going to be PPD-NOS.
So, my son Pierce hit all his motor milestones on time, said his first word "dog" at age one, but then never really acquired much language after that. At 18 months he wasn't pointing or waving, his eye contact was present but extremely low, and he only said a handful of words (but not "mama" or "dada"). He was evaluated and accepted into the state of Arizona's early intervention program and started speech therapy about once a week. Now at three and half, his speech has improved dramatically, but he's still delayed compared to other three year olds. His eye contact has also improved dramatically, but it's far from normal. He also tends to stick with parallel play and his social interactions aren't normal. It's hard to get his attention and he has an excpetionally short attention span. When he was younger he "tippy-toe" walked and I saw him flap at least twice. He's very sensitive to being over-stimulated and, when he was younger, would cover his eyes or ears.
What keeps him off the Autism spectrum is the fact that he does not "over-focus" on activities, has no repetitive behaviors, only very, very mild repetitive speech, plays with toys normally--engages in imaginative play, and he's very affectionate.
We just saw our second developmental ped yesterday and she confirmed that he is not on the spectrum, but neither is he normal. she thinks he'll probably qualify for preschool services and we are trying to get him into the school system, but so far no luck with the hearing test (he flat refuses to cooperate).
So that's where we are. I'd be very interested in meeting other parents who kids have similar issues or even other kids with different symptoms because at some level I think the coping skills are transferable!
I happen to be a Ph.d and I work for a major national charity that covers a different set of diseases so I may have a slightly different perspective. I already checked out Autism Speaks and didn't feel like they had a lot to offer those of us dealing with PDD-NOS, although their materials looked better for Aspergers.
Anyway, sorry this is so long--whoever started this group, thanks so much! I'm glad I've found you.