Snowenne, they're talking about taking out Asperger's and leaving it all as autism. Are you concerned that it could mean that all those with an autism diagnosis risk being labelled as Aspies in disguise? I think you could easily fight that.
chriscrosses - we were part of a food sensitivity research project, in Sydney, back in 2004. The project was run through a pediatric immunology department of a major Sydney hospital and was looking at possible connections between autism and food sensitivity. Their initial findings were thta about 30% of those with a diagnosis on the autism spectrum somewhere, found that there was some improvement after food sensitivities were identified and removed from the child's diet. These included not just artificial additives but also naturally occurring chemicals including gluten, salicylates, amines, glutamates, lactose etc. The elimination diet needed to assess these was labelled by husband as the "food-free diet". it's nasty, it is not sustainable but it did give us valuable information. Notably, that in difficult child 3's case, the only food chemical he reacts to is caffeine. And we had already known that.
The delight in our boy when he was told it was time to challenge (ie "you can eat it now, and we'll see if you can tolerate it") was amazing to behold. His delight on discovering that he had no problem with his favourites - even better. He lost weight on that diet, at a time when he should have been gaining normally. But we are glad we went through that process, there was a chance and it was worth it for that.
On the subject of telling/not telling people about the autism diagnosis - we've been open about it. A lot of people would not accept what we told them, however. They continued to try to tell us there was nothing wrong, that it was just bad parenting. Or that I was catastrophising. One local doctor was very loud in his criticism of the diagnosis, as if I was the one who had labelled my child and not the various specialist medical teams. That doctor has now left general practice and is now practicing cosmetic surgery (which requires no qualifications here, other than GP). Who knows? Maybe if he keeps practicing, he might get competent at it one day...
Back to difficult child 3 - he would tell people openly about his autism. From his point of view, it is a gift. We did go through a phase where a well-meaning idiot friend of mine prayed with difficult child 3 that his autism would be healed - I set her straight, said it was sending him nasty mixed messages to not accept himself as he is. Autism brings gifts, even as it causes other difficulties. In our house we allow stims, we allow coping strategies and allow idiosyncrasies. This is home, home is supposed to be a safe comforting place. So when the boys wanted to swing in a string hammock, completely wrapped up in it, that was okay. When they set up a giant cardboard box in the living room and climbed inside it to watch TV through a tiny window they cut in the side of the box, that was okay. We explored weighted vests, we explored other interests and sensory stimuli. In so doing, we have discovered surprising gifts and encouraged them. The boys have a capacity to concentrate intensely on something small and simple - we have encouraged that also.
Right now I think difficult child 3 is not so happy with his autism - he is very frustrated right now. I'm hoping his medications are the issue, but it will take a few months to sort it out. But overall - in our home, autism is how you are, and it is valued.
Marg