Amy, I'm glad you're on the road to having answers. It really helps to know what you're dealing with-- that way, you will flounder less and make decisions that really help.
We started asking serious questions at age 2, tried hard to find the right people to talk to, but didn't get a diagnosis for DS until age 5. I think that gifted kids on the spectrum tend to present quite differently from others in certain key ways (language skills aren't always noticeably deficient, for example) and that this tends to delay diagnosis.
You may also find the parent forum at
http://www.aspergersyndrome.org/Forums.aspx useful-- some good folks over there with lots of experience.
DeeDee
