The Tyranny of Hands and Verbalism
When I imagine how it feels to have severe Autism, with other “isms” like ADHD and IDD, I imagine lacking the urge, will, and ability to use my hands in a functional way, or any way, or like in a nightmare, the hands won’t dial 911, open a door, wave as if I'm a frozen statue, and then my hands don’t grow muscles at all, they’re soft, like a cookie dough star, a spongy sea urchin, but dry, and warm, but for everything that needs to be done, the hands don’t respond.
It’s similar with words. Nothing with words is easy or makes immediate sense. People talk so fast, with so many words, about things one can’t connect with, abstract, just sounds really, at various pitches and tongue movements. Imagine mimicking it, but never finding fluency.
Never finding it natural. As if an alien culture landed and informed language using humans that from now on, we will communicate through puffing our cheeks out (the aliens have cheek-gills, so this adds nuance and a visual, essential aspect to their semi-audial communication style).
Cheek gills, have they. And we don’t. We don’t even have working gills! We do all the oxygen exchange through our smelly, putrid mouths with our banana colored teeth and like dogs, really, panting, don’t utilize our cheeks at all, much less our cheek gills.
But suddenly, you’re born into a family that DOES have cheek-gills, and it’s easy for them to use them. But you don’t. But you love your family and they love you. So they try to accommodate your needs to not be forgotten like yesterday’s trash. But mostly they wish you could do the thing that’s so EASY for them. Flaring their cheek-gills in short, red-slice of light-flashing message amongst themselves.
That’s just a metaphor for the frustration and isolation kids without narrative language concept (severe “nonverbal” Autism) feel not intuitively grasping NARRATIVE LANGUAGE CONCEPT.
time IS NOT the same for them. “FIRST, NEXT, THEN, LAST” is a lesson 4-5 special education teachers will teach this child (you, imagine it) at least on a weekly basis for at least 6 years. They will NEVER care about it, and most will actively refuse it FOREVER.
“Now” is their reality. Give me the thing I want or need now. I’m not interested in later and I’ll fight you for it unless you bribe me sufficiently.
People with severe Autism are direct in a beautiful way. I love working with Will, though. He’s my friend in a way, we’re friends. I’m an old, unbalanced lady and he’s a young, unbalanced man, a forever-7-year old, in an ivory tower, held by his mother, the peasant Queen, just like Diana.
And then what about the hands? The small, soft, pale hands, the little starfish hands, that don’t listen to the need of the times. You’re needed, hands! One of the hands raises 3 inches of the lap. But the hand won’t do it's job, because it’ll fall back on the lap, rather than grabbing food and putting it in the mouth. He can’t use fingers in a way like humans or raccoons- like to DO STUFF. Can’t or won’t, hates it.
I’m the hands, I’m the voice-prompter. It’s a huge responsibility, but I can do it this way— only teaching one at a time. The main job is to imagine it. The secondary jobs are to be there when his brain is too tired for all the cheek-gill-flapping and gills in the cheeks everywhere he turns. It’s too hard. School is hard. Bus is hard. Life is hard— so much gill flapping, and I try to puff out my cheeks like everybody else, but my cheeks are too tired right now, too. I’ll feed you then. Fly away, little alien, speak your alien language, I’ll fly away too, free from reason, time, narrative of first, next, then, last. Just kidding, I can’t. It’s my job to be sober as a clock.