Alex is just now getting so he can tell me when he wants something and what he wants with some consistency within a limited number of needs. He's never been able to tell me when something hurts or how he feels in any way. I'd like to say that I've gotten pretty good at knowing what he needs all of the time but unfortunately it doesn't always come easy. I know that when he's hungry or uncomfortable ("disregulated") in some way, he has a vocal stim that sounds like a growl. It's very hard to break through his shell when he's making that sound so he usually won't communicate to me what he'll eat; I just have to choose something and hope he'll eat it. If it goes too long, he won't eat and it'll turn into a tantrum. At that point, there's a long process we need to go through to get him back. His tantrums can go on for an hour or more.
It has gotten better. A year and a half ago, Alex's only form of communication that we could recognize was crying. He had absolutely no meaningful words or phrases and couldn't tell us what he wanted. The very first phrase he learned to use was "I want milk." He would only say those words, though, if we prompted him by saying "I...." and using hand-over-hand sign language by putting his hand to his chest. This was the beginning of a revolution of learning for him. He now has many functional phrases that he uses and he also uses some independent language, which to me, feels like a beautiful miracle.
Although he's learned a lot of language since we started therapies, he is still a puzzle to me. After delving into the biomedical approach to treating autism (namely diet changes,) I'm always looking for patterns in Alex's behavior. However, if he's proven one thing to me, it is that as soon as I figure something out, it'll change. For example, over the last few months, Michael and I would take Amelia and Alex to the mall and we would have dinner in the food court. It was a way to get us out of the house during the winter so we did it every couple of weeks. Alex was great; he'd ride in the double stroller with Amelia and sit calmly at the table with us to eat dinner. Recently, when we tried to go out for dinner and in two separate restaurants (at two separate times,) Alex wouldn't sit down and just cried and fussed until we left. He seemed truly bothered and unsettled; almost scared by something in the restaurants. Then when we tried to go to the mall where we thought he would be comfortable, he was on the verge of throwing a tantrum before we even walked through the doors. I don't know what changed but he can't tell us, so we're left to take educated guesses.
One thing I do know is that when he starts showing the signs of discomfort, even if he can't tell me what's wrong, I need to do my best to help him meet his needs. If I don't, he goes into a downward spiral of feeling worse and being less able to communicate. I recently read the book "Ten Things Every Child with Autism Wishes You Knew" by Ellen Notbohm. In the book she writes that all actions are communication. I've really started to try to tune into Alex's actions so that I can find out what he needs. I'll do this for my boy until he can do it for himself!
