Over the weekend we played a story telling game. The round robin story telling was an idea Emma came up with during an RPM session she had a few weeks ago and it seemed like a great idea for a rainy Sunday morning. (Unfortunately, I didn’t get everyone’s permission to print our story here.) Suffice it to say, it involved rain, a family made up of two parents, a girl, a boy, and a tornado carrying a herd of walrus.
Emma began the story with one sentence, then each person added a sentence and we continued going around in a circle. Emma spelled out her sentences by pointing to letters on her laminated letter board, my husband and son said their sentences out loud while I transcribed what they said, but when it was my turn, I found it very difficult to think of what to add out loud, and so I wrote my sentence down first and then read it to the group.
After each person’s contribution there was much laughter and ad-libbing. At one point Richard, who, it must be said, couldn’t help himself, constructed perhaps the longest, and wonderfully, creative run-on sentence every spoken. He did look a bit sheepish afterwards, but the story moved along until it was Emma’s turn again, where upon she said, “All done. No. You have to work!” Her comment reminded me that for Emma this “game” that was intended as fun, was “work” for her. As no one else was viewing it as work we stopped after the fourth go around, at which point Emma raced off.
I think a great deal about how hard it is for Emma to communicate, whether that is through spoken language or writing; they are both hard. This surprises many people who assume, as did I, at least in the beginning, that someone who cannot rely on spoken language to communicate, would be more than a little relieved to finally find a way to express themselves by writing instead. However Emma has told me on several occasions that while she is relieved that people finally can understand her when she writes, it is also very, very difficult for her.
Emma recently described writing as, “It’s too hard work,” but it’s easier for the rest of us, particularly as it tends to be more accurate of her thinking than her spoken language. Not long ago Emma wrote, “I can’t talk the way I think.” But it would be a mistake to then assume writing is easy or that she eagerly does it. And I was reminded of all of this when it was my turn to come up with a sentence for the story. I couldn’t come up with a sentence through spoken language, but had to write it down first. What if everyone had insisted that I say my sentence out loud, what if someone had said that it was against the rules to write the sentence down first?
I can tell you it would have been much more difficult for me, though it still would have been fun. But what if I experienced the world in other ways and not with words? What if my experience of people and things was not through pictures, words or anything that can even be described with words? Wouldn’t both written and spoken language through the use of words be equally difficult for me? What if my experience of the world was completely different and having to translate this experience into words was actually impossible? What if so much was lost in the translation that it no longer represented my experience? What then?
Em with her string
Emma's Hope Book 
I can understand how Emma is feeling. I can speak very well but I have always been extremely distressed by games involving words. I can’t just come up with words on the spot, and these games involve creative use of words, so you can’t rely on previously learned models for sentences, like I normally do. So I desperately try to come up with something, and everyone is waiting for me to say something funny, and there is an awkward silence, and people start telling me to hurry, and telling me how easy it is, just say anything, and I panic even more.
That she works this hard is a sign of love. Often, the chore of expression and interaction is so taxing, I want to give it up entirely. I keep it up for my family and basic needs, but autopilot kicks in. Then I have to go through the constant ‘stop, those weren’t the words I wanted’. It’s deflating.
I can somewhat understand how Emma felt. I have a page on Facebook where I get daily messages and almost daily emails (and I love it). It becomes quite tiring responding to all those messages and emails, no matter how much I love it. There are times I have to take a break…just get up and walk away for a bit…sometimes for minutes, sometimes hours, sometimes a day. It can be very exhausting and frustrating to continually communicate and come up with things to say and sometimes one just needs to take a break. 🙂
This is reminding me of what Sue Rubin said of her experience when she first began to type at age 13, she talked about her mind “waking up” and she then realized that she was a “thinking” person and that she had in fact been learning things all along but did not have an active way to engage about her learning through communication. So I would be interested in knowing from Emma whether her thinking process has changed since she began to type. I wonder about this because the storytelling game is one example of a situation where your thinking is not happening in a vacuum but in response to what others are saying. Also, you are in a situation where others believe that you have something to say and so you will have the confidence to come up your own ideas to share.
My problem isn’t with “words” per say–words are just sounds/shapes, at the end of the day–but with sequencing them. I kick butt at Bananagrams because I can form, break apart, and reform words from sounds super quickly…but if you ever made me play a sentence-making game I would like, cry. My thoughts aren’t small objects that can be set in an order. Once I was talking with Landon about this and described it as if I had built a Lego castle in my room, but had to transport it outside of my room to show other people. Except the door to my room is locked, and the only opening in it is one, Lego-sized hole. So I have to break apart the entire thing and then arrange all the Legos in order so that the people on the other side of the door are able to re-build the castle piece-by-piece as I pass Legos through the door. Landon added that the only inaccurate part about the analogy was that a Lego castle is already built out of individual pieces that can be taken apart and put back together easily; in actuality, the castle inside your head is all one thing, so you have to figure out what pieces it can break into all by yourself.
I actually tried to write about what stuff was like in my head/my writing process back when I was maintaining a tumblr I’d started before I got my ASD diagnosis–which was mostly about ADHD stuff at first, but then started to involve more ASD stuff as I tentatively self-diagnosed. And I think once or twice I did a pretty good job of summarizing my brain. I’ll give links vs. writing an even more monster-comment. Also no judging my awesome first tumblr-name!.
Describing my writing process:
First, short version– http://robot-bear.tumblr.com/post/42879095294/what-does-organize-even-mean-anyways
Second, better/more detailed version– http://robot-bear.tumblr.com/post/70682115217/organizing-a-basketball-the-extended-directors-cut
Talking about how I like to explain things/communicate ideas (rather snarkily): http://robot-bear.tumblr.com/post/71723798585/i-am-not-a-tour-guide
Philip has talked about the hard work of communicating in his blog too. He has described his mind as moving very fast, thinking a lot of things all at once all the while suppressing things like stims and impulses. He has described the process of writing as pestering his mind to keep from running wild so he could slow down enough to think and communicate clearly. He has described this in the following post: http://faithhopeloveautism.blogspot.com/2014/03/the-mental-map-part-2-expectancy.html?m=0
It’s awesome that you all can take part in a game like the one you describe: the result of the hard work and perseverance by Emma, you and everybody else who has worked with you to help Emma to communicate. You are all a wonderful example of the strength of loving relationships. ❤
What a wonderful topic! Got me thinking about how I could contribute to the conversation, having spent a lifetime thinking about thinking! All the kinds of minds are fascinating, but the real wonder is experiencing one’s own mind, and then becoming aware of it, and its wonderfulness! The kind of mind you first asked about, Ariane, is the kind my friend ‘Bob’ has: a Zen golfer, I call him. He says he thinks neither in words or pictures, and unless one or the other is planted in front of his face, he just zones out into golf. (Don’t many of us spend a lot of time and money trying to achieve that?) And this is the way I describe my own thinking: neither words or pictures either — *unless* I am *trying* (to process, to organize, to associate, to express), in other words ‘aware’ or ‘conscious’ of thinking. Because I can’t visualize at all, I am left with words to do all that ‘meta’ stuff, and, for me, words make things ‘real’ — which is really just conscious. Whew! This is worth a long long conversation!
Love the spreading of awareness through this post that yes there are individuals out there that think different than the ‘norm’ and find it hard to express themselves in that way and they are still quite capable of being brilliant as well :).
“What if my experience of the world was completely different and having to translate this experience into words was actually impossible? What if so much was lost in the translation that it no longer represented my experience? What then?”
I love this.. I often think about this too.. I think we, who find communicating in spoken words easy need to give this some long hard thought.
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Does it get easier the more you practice communicating by writing, or is it always going to be hard work? Is it anything like learning a foreign language? I wonder this for my daughter. Right now it is very hard work. I hope it will get easier over time.