Communication frustration

Lately, Sophie has been showing some real desire to communicate. She seeks us out many times a day and moves her mouth soundlessly as if speaking while looking intently into our eyes. It's as if she's compelling us to understand. Of course the frustrating part is that we don't understand, or we are not certain if we understand correctly. We do our best to guess what she wants, but since she has been inside her own head for so long we don't really know her I'm afraid. Oh, we know she loves Thomas and fruit but she's been showing us there is way more to her than that, we are barely skimming the surface.

So the typical scenario goes like this:

Sophie comes into the kitchen, grabs my sleeve and starts "speaking". I try to gauge, by the slightest nuance of body language or where her eyes seem to be glancing what she wants to say. I ask, I prompt, but I'm at a loss. She gets increasingly more frustrated. I can't stand it and give her something I know she will like- her sippy cup, a hug, or a snack. She accepts my offering and waddles off pacified for now. I feel I missed the point.

I'm sure some (if not most) of the time we are probably more or less correct in our assumptions. If she comes into the kitchen she is probably hungry. But she could also be lonely. Or maybe too hot/cold. Or want to go pee (whole different post but it's also a major communication frustration). Or maybe she did pee and wants to be changed. Or maybe, just maybe I'm way underestimating her and she had a completely spontaneous thought which she wanted to share with me. And there I go cutting up some grapes and looking at her hopefully.

These are thoughts that are driving me crazy lately. Especially since she has been getting more frustrated in the recent weeks. On one hand I figure frustration is a good sign. After all, you need to have some ideas in your head to have the ability to be frustrated, I think. Before, Sophie was so passive she never got frustrated. She was catatonic almost. So for me, her getting frustrated is a sign of some developmental progress. On the other hand frustration is, well... frustrating. Since we don't really know the scope of her cognitive abilities, we are fumbling in the dark as to the range of things she could be frustrated about - is it merely physiological needs? Or is it more or less developmentally- appropriate toddler behaviour? Or is she so self-aware that she realizes that we are all communicating using language while she cannot? When we are talking to her we always try to get down to her level and speak to her eye-to-eye. It was puzzling to me why she would always try to put her fingers in our mouths like she was looking for something. Recently, my husband said he thinks she is trying to figure out where the voice is coming from. Which makes sense to me but I don't know how to help her.

From autismhelper.com

We have decided to start using the Picture Exchange Communication System (PECS) with her. Our OT was kind enough to print out some cards of highly motivating objects (mostly food-related :). We have been showing her the pictures and getting her to make choices and she seems to catch on fast. However, I'm the kind of person that likes to do things "the right way". So I've been learning about PECS so that we can teach her the way the system is designed and not end up confusing her. This website was particularly helpful as it laid down the basics organized in a sequential manner. I thought we had a bit of time to wrap our minds around this system, but given Sophie's urgency to communicate I think there is no time to waste at this point. In the next couple days I will be making a couple communication "wants" boards like in the picture. One will hang in the kitchen and will be for food and drink items and one will be in the living room and will have couple of the activities she likes to do everyday. And then we will see how it goes from there I guess.







  1. This is such an interesting post! It made me think of so many things. Janey used to always put her fingers in my mouth, and it never struck me it might be her trying to figure out talking. That's a great theory. My older son, when he was younger, used to do the soundless talking thing. He could talk well, but when he was very, very emotional, he would start mouthing his words. It was very, very odd, and I haven't thought of it for years. It seemed like he was worried he'd say the wrong thing. I wonder if Sophie is practicing talking, and wanting to make sure she gets it right before she starts talking again. Maybe she is like you with the PECS---she wants to fully understand it before she jumps into it! It's great she is getting the PECS some. Janey never, ever took to those. She is not very visually oriented, and the only thing she would ever do with them was tear them off the board for the cool Velcro sound, and then crumple them up and try to put them in her mouth. Thanks as always for your great post.

    1. Thanks! I think that's where Janey and Sophie differ- Janey is more auditory and Sophie definitely visual. In fact I do worry about the extent of her auditory processing deficits, her receptive language level, etc. Sometimes I get the impression that she has the info somewhere buried in her mind but there is some noise blocking her from hearing clearly. Like the microphone feedback sound or something. Its exactly like the post you wrote- the knowledge is there (I believe) but accesing is very difficult. And hence the frustration! For her and for me.

  2. We're starting using PECS soon, thanks so much for that great link! Our ST and other therapists have all mentioned it, but our special instructor suggested taking photographs of some of the most used objects/ items to start with (his sippy cup, his blankie). I think I've been dragging my feet a bit because I want to get it right, too, and also because it's HARD to be patient working on new things when they take so long to start to work. This whole thing is really teaching me about patience and delayed gratification, that's for sure :)

    1. I thought I was patient before but I'm totally zen now, lol. It is definitely humbling and overwhelming the amount of knowledge we are forced to absorb- I have read about genetics, biology, neurology, behavioural science... And have no degree to show for it!
      Thanks for stopping by. Good luck


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