Imagine being asked a simple question, say a question about whether you’ve ever been to New Zealand. Now you know perfectly well that you’ve never traveled to New Zealand, though you have a pretty good idea of where it’s located, however it’s not a place you’ve spent much time thinking about and it wasn’t even on your top-ten-must-travel-to-before-I die list. But when you opened your mouth instead of saying, “No, I’ve never been to New Zealand, why do you ask?” all you could manage to say was, “Yes!” and not just a sullen sort of yes, but a happy, eager and enthusiastic “YES!”
So now the person begins talking to you about New Zealand and maybe they’ve just returned or they were born and raised there and they go on and on and then say, “What was your favorite place in New Zealand?” Well, since you’ve actually never stepped foot in New Zealand this question is impossible to answer and so maybe you say “vanilla cake” because the one thing you know about New Zealand is that people are referred to as Kiwis and your only reference to kiwis is when you tried an actual kiwi once and didn’t care for it, but your favorite thing to eat is vanilla cake and besides vanilla cake makes you happy and this conversation is making you anxious because you said “YES!” when you actually meant “no” but things have moved on so quickly that you are feeling tremendous anxiety and wish you could just go somewhere away from this voice that is speaking so quickly about a place you’ve never been to nor have any interest in.
They look at you with that look, it’s a mixture of irritation and surprise, like they cannot decide whether you are purposefully making fun of them, or are tuning them out because you’re rude and have no manners or because you are actually hungry and are wanting to eat some cake. So they give you the benefit of the doubt and say, “Yeah, well we can’t eat vanilla cake right now and anyway we were discussing New Zealand, so I’d like you to focus so that we can continue.” Feeling frustrated and maybe even ashamed that they think you’re rude, you try to make a friendly overture by saying, “I like vanilla cake.” But instead of smiling they look even more angry and so your anxiety kicks into high gear and you bite your hand to center yourself and because you are overwhelmed with frustration.
Suddenly all thought of New Zealand and anything else gets tossed out the window, because here you are biting yourself to center yourself and also cope with how frustrated you are, but all it does is make the other person furious. You are so completely misunderstood and without the means to explain, you are caught in a web of other people’s assumptions. “Stop it! We do not bite!” the person scolds and maybe they grab your hand and hold it done at your side. Their grip is firm, so firm, it actually hurts, and they look so angry that it’s scary too. They are restraining you and glaring at you and all because your mouth wouldn’t obey your mind and said, “Yes” when you meant “no”.
I have no idea if this is what it’s like for my daughter or others who have what I call unreliable spoken language, but these are the kinds of scenarios I imagine and wonder about. Is this what it’s like? One day she will tell me, but in the meantime, there are others who are now writing about similar things, when their mind knows but their body is unable to do as their mind wants. This is what Ido writes in his book, Ido in Autismland:
“… my mom asked me to hand her a bag. I kept handing her a piece of paper the bag was near.”
“It happens less often now but it was common when I was small in my ABA drills. I wanted to touch a card but my hand had another plan so I had to redo drills until my hand got it. Not my head. It knew everything. My hand had to learn the drill. It’s something for the neurologists to study. This is why so many parents think their kids don’t understand them.”
Naoki Higashida in his book, The Reason I Jump, writes:
“…as soon as I try to speak to someone my words just vanish. Sure, sometimes I manage a few words, but even these can come out the complete opposite to what I want to say.”
What would that be like? How would it feel to be completely misunderstood, your every action misinterpreted by someone else who believes you meant something that you did not?
Tracy Thresher types during a Q&A at the ICI Conference ~ July, 2013