I have been noticing how complicated communication is for RJC. Not like I haven't know this for years upon years, but now that she is making so many efforts to be social and to communicate, I can see how incredibly difficult this is and I feel for her. Communication is complicated in general, but when one adds autism into the mix it is overwhelmingly complicated. All day every day, we find ourselves in social situations. We need to make ourselves understood and understand others. Imagine knowing what you want to say but not being able to make yourself understood. Or hearing words come out of other people but not understanding what they are saying to you. The frustration, the confusion, the helplessness.
We work very hard in making RJC as independent as possible. Yet communication is a large part of being able to be independent, and this is one area where she is sorely lacking. Take the case of restaurants for example. For her to order her food herself we need to directly teach her what words to use. We basically give her a script to memorize. There are problems with this method. We cannot possibly know every question that will come her way. We cannot count on every wait person to have the patience to listen and attempt to understand her language, We cannot possibly know how each restaurant prepares a specific food, therefore ordering the same food in different restaurants has different results. For example, a Chicken Caesar Wrap, can result in getting tomatoes which she does not like, or not getting croutons, which she does like.
The other night when we were out, RJC ordered dinner and the waiter had less than no clue what she said. Granted, her syntax was incorrect, but surely the sentence "cheddar cheese soup and six packs of crackers in a bowl" isn't difficult to figure out. Neither is "cold water with ice cubes." So what the was problem? Did he stop listening because the sentence was oddly worded? Did she make him nervous because she was obviously not a "typical" twenty-two year old? Am I so used to her wording that I don't understand why others don't understand? Was he turned off by the fact that she was telling him what she wanted in a very scripted tone of voice? Whatever it was, she finished telling him what she wanted and I needed to repeat what she said (well, maybe "translate" is a better word to use than "repeat"). I imagine that is frustrating for her.
Even when she is able to communicate her general needs to the world, the world communicates back to her in complicated ways. While she is capable of ordering what she wants, there are often questions that come out of the blue that make no sense to her. For example, she may be asked questions like, "Do you want to make a donation to ___", Do you want that made with whole milk, skim milk or 2%?" "Do you have our rewards card?" People generally speak quickly and there is a good chance that while they were asking her a question she was talking about her purple friend, "Barney." After all, she put in her order. She was done. There is no concept that this is a two-way communication. Even if she was aware, she couldn't answer the questions that come at her because we cannot necessarily know the options that she would be asked, in order to teach her the correct response.
And this is just a restaurant! Add in the rest of her day and all of the communication that has to take place in order to be a part of the social scene and it's overwhelming. Is it really any wonder that meltdowns occur? Or that she escapes into the familiar scripts from Barney, Sesame Street or Wee Sing? Or that when we go to the mall she wants to go into the same stores in the same order?
It's amazing that she is as happy as she is. That she continues to work at socializing at all. That she navigates through a confusing world as well as she does.
We will continue to do our best to give her tools to communicate. Going back to the same places is helpful - she gets to know the menus, the staff get to know her, understand her, and come to a comfort level communicating with her. On top of that, we truly do not know what she is capable of or what she really understands so it is important that we continue to work on the proper use of pronouns, getting her to listen to others and try to answer questions. We also never know when she will meet up with some wonderful person who will work to understand her so that she can be independent in her interaction. We love those situations.
Communication challenges. It's what we live.
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