Of all the mysteries Janey presents, the most frustrating one to me is her speech. Why is it that she doesn't talk more, and that her talking basically never advances? Or, perhaps the more correct question---why is it that she talks at all, while other girls with autism I've heard of that seem more advanced in most ways than her DON'T talk? Either way, why is it so hard for her to communicate?
Last night, I spent some time while not being able to sleep thinking about the possible reasons for Janey's limited speech, and eliminating them one by one in my mind, trying to get to the core of it. Here are the reasons I ruled out, and why...
Inability to produce words verbally
That one is easy to rule out, because Janey can say anything verbally. I know this because she DOES talk constantly, using delayed echolalia. Janey can recite the full script of movies and TV shows she's seen years ago. She can say several Three Stooges skits line for line. She remembers lots of poems she's heard at school, to say nothing of the thousands of songs she can sing. She has no problem producing speech sounds, with the exception of "th", which she has a bit of trouble with, but she says it anyway, cutely.
Lack of vocabulary
It would certainly be possible that Janey could have a lack of vocabulary, because the words she says via echolalia could be meaningless to her---just recited words. But that doesn't seem to be the case. The most vivid way this is shown is when she's in a very rare cooperative mood and she will allow herself to be quizzed on single words, with iPad programs that show pictures so she can name the words. She knows amazing amounts of words---mostly nouns, but some verbs and adjectives. She can name obscure things like "pelican", "castle", "earmuffs", "peacock" and more. We have watched her do this in amazement several times. She KNOWS the words.
Lack of understanding of spoken language
This would be more of a contender until recently. But Janey has shown more and more how good her receptive language is. The best way she shows this is by following complicated instructions. She often will come to me with something she wants to eat, like a jar of salsa (which she eats on its own). I will say something as complex as "You can have that after you close the refrigerator and get me a bowl and spoon, and take off your top so we can put on an old one that can get dirty", and she will do all I say to get the salsa. I can ask her to get ready for school, and she'll find her shoes and backpack and walk to the door to head out to the bus. She knows what we are saying.
Lack of desire to communicate
I don't think this is it. Janey asks us for things all day long, and often she is frustrated that we don't get what she means. For example, her most used phrase for about a year now is "Snuggle on the bed" However, this can mean about 10 things, including "I want to snuggle with you", "I want you to get up from the bed (or couch) where you are so I can be there instead of you", "I am tired and want my pajamas on so I can go to bed" or "Stop doing whatever you are doing and pay attention to me", among others. She very much wants us to know what she is trying to say, but she doesn't seem able to narrow it down, even with us modeling a phrase once we do figure out what she means that particular time.
So----Why? Why is Janey's speech about the same as it was at age three, when she first regressed, and worse than it was at age 2, before she did? Why, despite years of speech therapy three times a week, has she made no progress that lasts? I don't know.
Many people have suggested augmented communication for Janey, like a speech program on the iPad. I downloaded the trial version of several such programs a few months ago, and have been trying hard to get Janey interested. She isn't, not one tiny bit. In fact, she now gets angry when she sees me showing them to her or even using them around her. She immediately grabs the iPad and switches to something else. Maybe I don't know how to teach them correctly, but she seems extremely bothered by the computer voice, although I've tried changing it. Janey is HUGELY sensitive to noise and sounds. She is an auditory learner, unlike many kids with autism who are visual learners. I think this makes AC doubly tough for her. She isn't interested in visual symbols, and she doesn't like to hear voices that don't sound like she thinks they should, just like she is driven crazy by off-tune music. So it seems like we are stuck with trying to get her to talk to conventional way.
I wish very much I could figure out how to help Janey with talking. However, I am starting to feel it's not going to happen. I'm not a speech therapist, but the very good speech therapists she's seen don't seem to have a handle on how to help her either. Maybe I need to just be grateful to be able to have her talk at all, and the truth is, I am, very much so. I know it's not a given, and I'm very lucky she does talk, even in a limited way, and that she does understand. I'd stop striving for more if she were happier. But when she screams and screams, I can't help but feel that she would be happier if she could tell us more easily what she is thinking. And so I will keep trying to figure it out.