Applied Behavioral Analysis is a dangerous body of knowledge
It grew out of studies of abuse that weren’t intended to study abuse
They just used abuse to achieve experiement goals
They beat dogs, they electrocuted people, they gave people diseases
They made them salivate, they made them wretch, they broke them
for the ends justified their means, and the means were abuse
So out of decades of abuse, people learned that you can train fellow humans
You can get what you want out of them with just a little bit of torture
And when I trained to be a Registered behavioral Technician, people said,
that’s a dangerous field, and they were right, and Autism Speaks is atrocious
because they’re a wealthy blob at the end of the experiments, promising people
a cure from something uncurable but natural, from something naturally imperfect
From nature, they derived the program to reverse nature to make it convenient
no matter what people in their clutches thought of felt about it
So when I used to care for William, deep down, I wanted to push him
I wanted to train him and withold supports from him, because I believed
he’d been trained the wrong way. I believed he could do the things
he refused to do, and acted like he can’t do, like use his hands
His hands are very soft and white, like the hands of an aristocratic girl
Who’s only job is to hold up the hand with the finger wearing a wedding band
Hands aren’t for work. Hands aren’t for labor. Hands are for flapping.
Hands are for flapping while rocking and holding onto an exciting idea
Hands should rub the thighs and flap in the air while other people hands
do the work of feeding, cleaning, picking up things, using remote controls,
flushing the toilet, putting on clothes, opening doors, and closing them
For Will, THAT is what hands are for: mostly for flapping to the beat of the
exciting idea. The idea has words, but sometimes Williams murmurs the words
Sometimes he whispers them, or turns the words into a tight hum in fast forward
speed, but most of the time, he wants you there with him, saying the thing.
I know almost all the things that William likes to say, based on all the TV shows
he watches, because I watched them all with him 100 times or more.
Words are gestaults to William. Words represent things bigger than words,
not like for most of us, but on a deeply emotional level. A group of words like,
“Do you see a CLUE! Where? Right there! Oh right!” (Blues Clues) carries
memories and if it’s invoked likely contains a tangental connection to something happening in the present moment. That’s why Autism so cool!
I love decoding languages, especially multi-faceted languages like Autism-script.
To speak this with somebody, you have to mimic things exactly. That’s what they like. Say it exactly like the character in the show say it, make eye contact, and like it! Be there! Don’t look away first. Mirror their facial expression (unless it’s sad). If it’s sad, try to flip it to happy. Sad is a dark place for Autism-scripts. William often brings up moments that he characters are scared or they FALL DOWN. If william starts perseverating on FALLING DOWN (which happens on way more TV shows than you think), we’re in trouble.
William is like me, insofar as the underground of sadness isn’t comprehensible or tolerable. Shame is intolerable. Being misunderstood is intolerable. Being left out is intolerable. william hates when I chat with his family and he’s not included. He gets “mad.” One thing he learned is that he can get the attention back by hitting himself or falling down on the floor. But today he just watched us, sadly, and the words were flying to fast for him to catch any of them.
I know how to break down most messages into the tone and shortness he can understand. It’s so much repetition. You say certain things the same way every time. I mimic William and he mimics me.
Today we were getting him dressed to go see his dad, which is always a nightmare. His dad believes William would use his hands if people stopped helping him. From an ABA perspective, all BHTs and RBTs would agree. You can train him to use his hands with positive reinforcement. That’s their stance.
But what if you can’t? What if, like Will’s mom believes, the inability or refusal to use hands is a type of catatonia, or catatonic behavior? What if he really CANNOT? What if the signal doesn’t reach the arm from the brain? Can we really understand anything that’s going on in someone’s mind who won’t feed himself, given a plate of cut-up food? Who would start punching himself in the head instead, until you feed him by hand?
As a mother, how hard do you push and when? His mother doesn’t want me to push at all. She wants me to do exactly what I’m doing: be his anchor person. My hands and my body and my attention are for HIM while i’m there. I don’t even check my watch. I put all my attention into perceiving the signs and messages he sends about what he wants. even if he just whispers a few words from a TV show, I find that show and play it. Then if he immediately asks for a different show (which is the baseline I’m used to with him), I do it. I don’t choose the show. Every thing he does is from his own intention or words.
I feel so good about it, honestly. I wipe this kid’s butt, and I don’t mind. And man I wipe the booty well, because imagine not being able to do it for yourself? Mom says that when he tries, he just makes a mess. I used to think WELL TEACH HIM, HE’S ALMOST A MAN.
But what if you can’t? How long should a kid sit around with a dirty, itchy ass because he hasn’t learned to wipe? And might not ever learn?
I get where his mom is coming from now. The more I resisted him (the way I used to sometimes) the more anxiety he shows. If I convince him energetically that I’m available to use, like a wheelchair, and I’m not distracted, and I can be his hands, his voice, his body. I can be his complete advocate.
This was always the core of what I do well, and why I became a teacher.
It feels great to get back to it. To do the main thing I liked doing, interacting
with kids with Autism, and not be worried about my academic pressures. I mean, that’s why I couldn’t keep up with the paperwork- there were always kids in my presence bidding for attention. That’s always the priority.
But not for administration. And that won’t change.
3 years ago, I was in better shape and so was my voice. I was worried that he wouldn’t recognize me. His recognition is occuring in slow motion. I know he grieved me when I disappeared 3 years ago and I always thought about him, too. I used some of his phrases and tones that I carried with me. Certain idiosyncracies that came up while working with other kids. I’d stop and think, “Oh, I got that from William.”
People with Autism are way worth the trouble. They are! Not because they’re like us, but because they’re not. They don’t “grow up” in the same way.
They get big, yeah. But they don’t stop being authentic. Worst case, they shut down. I felt like William has shut down a lot since 3 years ago, and gained a lot of weight.
But so have I.
We need people like this in the world. William is the person that makes me feel the most human right now. To hold hands, to let him lead me around his house,
to stand closely, to hold eye contact. I barely have that with my family!
My dog is the only other thing that comes close to how I feel about these kids, and Will, in particular.
He’s 21 now. He’s not really a kid. But he’s not growing out of child TV shows. They don’t. They don’t grow out of them. They love Elmo, Caillou, Little Bear, Brother bear, Blue, Magenta— they love them forever. Spongebob, yo gabba gabba, this is how their brain is shaped now. Those are characters that give meaning to our language. They provide the scripts.
Before I left this morning I helped Will pick his outfit out and put it on.
He chose a red hoodie, and I taught him a Russian word, “kraz-naya” for red. He instantly repeated it.
I have a tiny fantasy that one day their family will go on vacation to Europe and will take me along because I can manage their grown-up child and because I speak German and Russian (and if I learn Italian, which should be easy, that’s even better).
I love William and his family.