Thanks so much everyone. Very interesting and entertaining to read all of these responses and I feel a lot better now.
There is so much I still don't understand about my son. I did ask him some lightly probing questions about synesthesia stuff, but I got hilariously mundane answers. I asked if numbers ever have a color to them when he thinks about them, he said "Only if I'm using colored pencils or crayons." I asked if he ever sees anything while listening to music (I went with this one because when he hears music he freezes and stares into space until it stops) and he said "Well, if I look, I see the CD spinning." That answer was somewhat odd to me as we don't own a CD player where you can see the disc spinning, plus I don't recall ever mentioning that the CD's even spin in the player. Guess it's just something he picked up on.
My son has moments where he seems so bright and capable and then moments when we wonder if he will ever be able to live independently.
We went to a restaurant yesterday and after we finished eating I asked DS to give me his hand (to wipe it off as he tends to eat with his hands, even with constant reminders to use utensils). I had to ask 5 times. While staring in the distance he slowly moved his right hand over and lightly wiped it on the napkin I was holding. I prompted for the other hand. He did it with his right hand again. Repeat 2 more times. I tapped his left hand and he wiped his left hand. Then he picked up his water, which wobbling disturbingly in his hand. He bumped it against the table twice when drinking it. He hit it against the table again when trying to put it down. I got up to leave and asked him to meet me on the other side of the table. With prompts (and lots of readjustment of the table position) he got up and started towards me, then decided he needed another drink and stopped for that along the way. He then went to leave the restaurant with the cup still in his hand. When I pointed it out he seemed surprised and put it back. His dad said "It's like he's drunk." I had to agree. Then on the way home he talked about one of his latest interests, mold spores, for 20 minutes, asking and answering questions and attending to us with no issues.
Occasionally on a good day he will do something amazing, like go get himself dressed and get his shoes on with no prompts when we are going out. Normally I have to force him into his clothes even if he really wants to go where we are going. There are days he takes his plate to the sink as if it is nothing or gets up and brushes his teeth first thing in the morning like it's the norm around here. Then there are days he spends the whole day being difficult, throwing tantrums, giggling maniacally while terrorizing my home, screaming in frustration about every little thing, hitting us when we end up having to pick him up and move him, and generally making me think none of this will ever work out.
Everyone has a different idea what is wrong with my son. No one can offer any explanation for the good days and bad days and all of the regular days in between. I'd love to be able to say that I KNOW he is smart. The IQ test helped with that somewhat, but some of these moments make me doubt it all. He was a kid who hit intellectual milestones years early and was a very early talker, but all of this was always attributed to asperger's by the experts and I guess it will take a long time until I am confident that he really is gifted.
I just don't see a lot of those traditional gifted traits, the great sense of humor, the wordplay, the amazing ideas or philosophical thoughts. Maybe that is his age, maybe it is a limitation due to his very different brain. I do know that I can carry on a conversation with him without having to compensate for his age, vocab, or understanding and he almost always picks up on concepts very well. He loves to learn new things and he loves to challenge himself with difficult puzzles.
I'm really not familiar with what average 5 year olds are like and I have a group of "helpful" people surrounding us constantly focusing on everything that is wrong with my son and refusing to acknowledge anything that might be good. It's almost like they don't want you to have any hope. It's all let's focus on the problems and fix the problems we have right now. They are so negative and spend all their time with my son thumping their behaviorism bibles and bringing out the worst in him.
My son is a nice child and he is extremely empathetic. When I had a headache yesterday he helped me lay down and rubbed my head and gave me lots of hugs. I could see the real concern in his face. When my eye hurt last week he ran and got a washcloth, ran cold water on it, and brought it to me to put on my eye. If a kid needs help climbing something, my son is the first to offer a boost. He walks up to babies on the playground and helps to stabilize them so they won't fall over. OTOH, if someone is crying loudly, he runs away. If someone is quietly sad he will try to help them or give them something to make them feel better.
Right now he is crying with tears streaming down his face because his dad got him a drink, but put in on the wrong table. He refuses to ask his dad to bring it to the table he wants it on. And after a few minutes of that he just laid on the floor and slithered over to it and carried it to where he wanted it, whining the whole time. He also is currently obsessed with his Perplexus maze globe. Of course every time he falls off he flips out. He is generally miserable the whole time he uses it, but it's all he wants to do. I'm debating right now whether to take it from him even though he earned it for the rest of the day.
I could complain about my problems forever obviously
Honestly this whole post just started as a thank you for all of your replies! It's great having a place to go where other people have had some of the same problems and experiences. We have a few special needs friends and a few NT friends and a GT friend, but this is the only place I know of to talk to parents of complex and difficult 2E kids like my own. So, thanks for all of your help!
