Tag Archives: miscommunication

“Let’s Pretend You Are the Autistic One”

(A note on Emma’s post.  Because this is a fictitious dialogue that Emma wrote, for clarity’s sake, I asked her if it was okay to put the Autistic person’s words and thoughts in italics and the non autistic’s words in quotation marks.  She agreed.  My part of the conversation is in parentheses.)

For today’s blog post, let’s pretend you are the Autistic one and I should be the non autistic.

“Oh dear!  Why are you hurting yourself?”

(I asked Emma whether the Autistic person could use spoken language to speak.)

You can’t speak and I will talk for both of us, it will be more authentic that way.  Maybe you talk, but not with the words that best describe what’s in your mind.

“I don’t understand, do you want to go outside?  Why are you biting yourself?  Does that mean you do?”

You are thinking about expectations and how hitting yourself takes away the pain of not being understood and unable to say the words that will help.

“Here!  We will go outside.  It’s a beautiful day.”

I don’t want to go outside.  I want to read a story.

Pointless bottling emotions of endless frustration cause words to wither in the recesses of the mind.  Biting becomes the only way to stay rooted, but causes everyone watching to respond in loud voices of angry fear.  Until there is understanding, you are alone in the terrible confusion of other people’s voices that are louder than yours.

Caution is needed whenever we decide we know what is in the mind of another human being.

Emma's Ceramic Dish of Hope

Ceramic Dish of Hope ~ Made by Emma

Asking Emma

Imagine for a moment if you had an idea.  It was an idea that was in keeping with a conversation taking place by others in the same room as you, but when you opened your mouth to share your thought, instead of using words that would convey what you were thinking you said something that sounded like, “Peacock!”  Not only did you say “Peacock!” but your voice was loud, some would suggest you were shouting, even though you hadn’t meant to shout, even though you weren’t thinking of a peacock, that was the sound that came from your mouth.

Now imagine that, in addition to this, you smiled and maybe laughed too.  Maybe you laughed because as you said what sounded like “peacock” you were also hit with a memory of a time that was funny, or maybe saying those two syllables made you happy, maybe the act of saying them made you laugh, or maybe you laughed, but nothing struck you as funny, the laughter was merely a response to anxiety or maybe it wasn’t any of these things.  Maybe the laughter just escaped from your mouth, unbidden.

Whatever the “truth”is about why the person suddenly shouts what sounds like “peacock!” and then laughs, while others are having a conversation about global warming or are discussing their concerns with a project they’re working on or are talking to each other about what to have for dinner, they are unlikely to assume the peacock shouter is listening to their conversation, much less that they have anything relevant to add.  In fact, the people having the conversation may regard this outburst as an intrusion, or an unwelcome distraction.  Or maybe they don’t, instead they stop their conversation and smile, or laugh and say something like, “is that funny?”  “Are you thinking of something funny?” or “Oh!  Do you like peacocks?” and when all of this is met with silence or some other utterance unrelated to both peacocks and the conversation they were having, they continue  with what they were saying to the other person.

Richard is good about saying to me, “we should ask Emma” or “Emma, what do you think?” or “Let’s find out if Emma has anything to add” or just turning to Emma and saying, “Hey Em, we’re talking about _____.”  Including Emma in our conversations is not something we regularly did.  It’s not that we never did, it just wasn’t something we regularly did.  Including Emma in conversations was not something we once considered doing, not because we didn’t want to, but because it didn’t occur to us that she was listening and understanding, much less had something she might like to add.  This is where her being able to write her thoughts has changed everything.

Once we began presuming her competent we began including her, but as she didn’t have a way to express herself, the – “do you have something you want to add? or so what do you think?” questions were not asked of her.  But once she began writing, all bets were off.  Suddenly and quite dramatically her words propelled me to reconsider even more what I’d once thought.  All of my assumptions, all those misunderstandings, I now view differently.  Now when Emma shouts, “peacock” I do not assume she is interested in talking about the colorful bird.  She may be, but she may not be.  But and this is a big but, I’m able to ask her and she is able to reply.

Emma has written often that the words that come out of her mouth do not always reflect her thoughts.  I used to think that whatever she said out loud, was indicative of what she was capable of and, in addition, was what she intended to say.  My misunderstanding of what was going on for her made for a great many misunderstandings.  Had Emma not found a way to communicate, had she not found a way to write what she knows, thinks and feels, many people would not question that her spoken language is representative of her mind.  They would not be able to believe that she has the complex and brilliantly observant mind that she has.  For most people this is a very difficult concept to fully grasp.  It has taken me daily exposure to such a mind to begin to stop making incorrect assumptions about not just my daughter, but all people I meet who do not speak or whose language is not an accurate reflection of their thoughts.

Emma

Emma