Janey had her 4 year physical yesterday (about half a year late). All the health things were fine, she is growing slowly but steadily. But I decided to pin down her doctor a little more about his opinion of her---I asked him what he thought I should be doing that I wasn't, whether she seemed typical of children with autism to him, what his impressions were. He spoke carefully and said to him she seemed like a child with global developmental delays, with some autistic characteristics, such as her speech patterns. In layman's terms global developmental delays means basically that she is retarded, to use an old and now not correct term. And surprisingly, even though he said that on my birthday, I was not really sad to hear that opinion. It is pretty similar to my own opinion. She certainly might be autistic, but she is also quite delayed in many ways. She seems to have a great deal of trouble learning some concepts, and does not catch on naturally to things like routines or natural flows of life. I asked him about ABA and he said he wasn't really the person to ask, but usually it is not as effective with kids that are globally delayed. That went along with a good book I had read about how children with autism learn, that in some cases you just can't push a child to learn things they are not ready to learn, and often the only way they have of reacting to that kind of pushing is to act out, as they can't explain "hey, this is just beyond me right now, don't push me" She does have her areas of strength, certainly music and perhaps auditory memory, and they might really help carry her far, but I think she might always be delayed to some extent.
Another thing I did was insist he give me the report from her seeing the neurologist a whole year ago. It wasn't that illuminating, mostly it was just her observations of Janey and what we told her about her, but at the very end it gave her guess as to the diagnosis---Landau Klippel syndrome, or acquired epileptic aphasia. That was later ruled out by her totally normal EEG and MRI. But it upset me to see it there. I had asked the neurologist right out if she thought Janey had Landau Klippel and she has said no, all the while, that was exactly what she thought. L-K is a serious disorder where all of a sudden a child loses the ability to communicate and starts having seizures. Sometimes it's self-limiting, and stops at in the teen years, after the damage has been done, but sometimes not. I'm glad that isn't what Janey has, but there are still so many unanswered questions and probably always will be.