I missed a day of my aimed for week of new blog posts, but that's life in our household! The best laid plans of mice and men...
I think constantly about Janey's speech and its oddities. I was thinking for a long time that the main issue she has is with word retrieval. The words are up there, in her head, but she just can't find them when she needs them. Lately I've refined that in my mind. She can retrieve them under certain circumstances, but not in conversations, or in casual remarks or questions.
|Janey in a top featuring one of her favorite Christmas songs.|
For example, as I've written about before, Janey can show a remarkable vocabulary under very specific conditions. The best way to have her show it is, when she's in a good mood, to show her flash cards or point to pictures in a book. If we do this rapidly, without saying anything but "What's this?", she can name pretty much anything you could imagine. She'll name things we have no clue she'd know, like "iguana" or "moat" or "treasure chest" I think this might be a bit like Rapid Prompting. The key seems to be that you aren't asking ABOUT the words, and you aren't putting any other demands on her at the same time as asking her to name the words---not any social demands or extraneous comments or anything.
Sometimes it also works to ask her a series of questions, as long as they aren't about what she wants to do or how she feels, but more just information questions. For example, one night she wanted to go for a car ride, and I told her we couldn't because Tony was busy. I said "What is Daddy watching?" and she answered quickly "The Patriots!" and I said "What do the Patriots play?" and quick as a flash she said "Football!" I was very surprised at both answers. I had no idea she knew the name of the team or what they played. But it was up there in her brain.
Another clue to how Janey's speech is organized in her brain is the kind of mistakes she makes. One morning, I was helping her put on some Santa socks. I asked her who the socks showed. She answered, after a little pause, "Christmas!" I think there's categories she stores, and when she can't get the right word out the category, she gives the category name. This might be a part of her most common response, when she wants help putting on a TV show, and we ask her "What show do you want?" and she says "This one!" We are asking her for the specific show, and she is answering with a category, the category of all TV shows, because coming up with the name of the certain show is not something she can do right then.
Janey doesn't talk conversationally, without extreme prompting, not ever. Her speech just doesn't seem to work that way. She never says to us "How are you?" or "What are you doing?" or "Where are we going?" She never responds spontaneously to questions like "How are you?" She might say "I am fine!" if that's something she's been taught, but she'll never, ever just answer with a casual, on the spot answer. That is why I think she just doesn't have access to her vocabulary in that context. The words might as well not be stored at all, for how much she can use them in conversation.
I wish there was more written about how what's sometimes called "low-verbal" kids with autism talk. It's pretty fascinating to me. I've read a lot of science for laymen type books about how people learn to talk in general, such as "The Language Instinct" by Stephen Pinker, and I think a study of someone with a language disorder such as Janey has could help understand how words are stored in the brain.
One very interesting fact I've read a lot about is how sometimes people lose the ability to talk but keep the ability to sing. Janey's access to songs in her head is far better than her access to words. She will often start singing spontaneously, in a way she never does with talking, and this doesn't seem scripted. It just seems like a desire to sing a song, which we all have sometimes.
I would love to know how to better help Janey use the words she knows. Janey's had lots of speech therapy, but I don't think it's ever addressed her specific issues with retrieving words for conversational speech, and maybe there is no way to teach that. It's tough, because you can try to help her answer things, but in doing so, you almost always have to give an example, and that example becomes a script, and usually gets turned around in terms of pronouns. You can say "How are you feeling?" and wait for answer, but when you don't get one, how do you show her how to answer? If you say "I feel fine!", she doesn't seem to pick up on that as an example of how she can talk. So we'll say "Can you say 'I feel fine'"? And she'll say the whole thing back "Can you say I feel fine?" Or if we ask "Do you want to go for a car ride?", she comes to see that as a way to ask for a car ride, and we get the whole phrase "Do you want to go for a car ride?" to ask for a car ride.
Many days pass with Janey only saying three or four different things. Her mainstays are "I need help!", "Want to go for a car ride?", "Want salami?" (sometimes substituting other foods there) and "Cuddle on Mama's bed?" (which means she wants us to cuddle on her bed---at some point wanting Mama to cuddle her got mixed in with the bed part and turned it into that combination) That, along with "yes" and "no" and the always versatile scream are the core of her talking.
I'd love to hear from other parents of minimally verbal girls, and from those who communicate non-verbally as well as those who talk more freely. Communication in autism is fascinating (and frustrating)