social stories
The Lord is my shepherd; I lack nothing. I say it so quietly no one can hear, with my useless hands jammed under my thighs.
From the exam room in the oral surgeon’s office, I watch as the dental assistant walks my son across the hall for x-rays. Her long hair, shiny with florescent light, carefully penned away from her face, swings against her back. She wears scrubs–dark, brilliant blue, like Adam’s eyes. She must be at least ten years younger than me, but I noticed that her dependable smile has already etched lines at the corners of her eyes. We have that in common.
The Lord is my shepherd. I repeat the line, the poetry calling to mind a story God often tells me in moments like these, the multi-threaded picture of the God I know strongly leading, and me, no matter where we go, finding contentment in the sound of His voice. It’s a story my mom first taught me years ago, just before I took a blind curve.
It didn’t take long for the dental assistant to soften toward Adam, just a few moments. We have that in common too.
She asked him if his wisdom teeth were causing him pain, and I knew he would not understand. It’s that phrase–causing you pain. She needed to say, “Do your teeth hurt,” more directly like that, maybe pointing toward the very back of her mouth after she asked him.
He said, “Yes,” because he errs on the side of agreeability if he doesn’t quite understand; he finds that most people respond better if he does that.
“He’ll say ‘yes’ if he doesn’t understand you,” I told her. “I have to do detective work to know if he’s not feeling well, and I haven’t seen any real evidence that he’s hurting yet.”
She’d been typing on the computer and she stopped, pulling her hands away from the keys. “He doesn’t understand?”
She had tried to keep her expression blank. I’m familiar with the confusion though, so I recognized the deliberate pause immediately. I don’t know why, but this sort of thing happens often in medical offices. I tell everyone I can, “Adam has autism”–the scheduler, the receptionist; I tell them multiple times, describing my son and what that means for him, but for some reason most practices still must have no way to clearly indicate these things in their records, at least not initially. Almost always, the inner office staff seems bewildered by us, as though I’ve been keeping Adam’s situation a secret.
“Adam has Autism,” I told the dental assistant, explaining again that he understands a lot but not everything.
“So, when I ask him things, he understands sometimes?”
I nodded.
“But not always?”
I nodded again, surprised that with the growing numbers of Autistic people in the world and especially in our community, Adam can sometimes still be a medical professional’s first introduction.
“You just can’t trust the yeses,” I had explained further, smiling wider still as she turned to study Adam’s face. Most people expect some identifying difference in his appearance, but that’s not how Autism presents itself. Adam looks angular and handsome; his gaze steady and deep, and at this age, Adam has grown past most of his anxiety about dentists. He had glanced at her and then away, his silent withdrawal from eye contact the first and only evidence she would get of his diagnosis.
“Come on in here, my friend,” she says softly now, gently touching Adam’s elbow. I noticed she started calling him that, friend, started using that tender tone, the moment she realized he wasn’t just typically aloof.
He makes me lie down in green pastures. I keep on with the story while I wait, because it puts this whole exercise in the right context.
Adam glances back at me as she points to the panoramic machine, as she asks him to stand tall and put his head right there. I smile and he does as she asks, still without making a sound, and only I know that he’s at his quietest when he’s most unsure. She’s doing better with explaining. She tells him twice that he will stay in the room, very still, while she steps out.
“I will go. You will stay. Just quick! Be still. I will come back.” She flattens her hand and pushes it forward when she says the word stay, and he does. He doesn’t even try to glance behind him when she walks out of the room and closes the door, and I give thanks, whispering it under my breath.
He leads me beside still waters.
I remember when Adam would not have understood even those instructions, when he would have been so afraid he would have fought his way out of the room, when he would not have let her gently curl his fingers around the handholds on the machine. I am still getting used to the maturity in my son’s face, the broad power in his shoulders.
The x-ray done, the dental assistant winks at me, gives me a thumbs up as she opens the door and tells Adam he can back out. She puts her hands lightly on his hips, tugging backwards so he knows not to try to turn his body while he’s still standing in the machine.
“He’s going to do just fine,” she says lightly, and of course, I know he will.
I know that at home I will create a social story about this surgery that Adam can understand. I’ll write out all the details; I’ll draw pictures and affix a tiny piece of the gauze that will be in Adam’s mouth when he wakes up. I’ll tell him he can’t eat before, but that after he wakes up he can have some ice cream. I’ll write about ice packs and medicine and sleeping during the procedure.
Because we do this often, Autism families can uniquely understand why God talks to us in stories. We can understand how He uses poetry to restore souls. We get why God prepares His children for His glory by showing us mountains covered in smoke, thundering with storm; by showing us Jesus transfigured in front of his incoherent disciples, face shining like the sun, clothes as white as light. We understand that it’s a gift to have it all written down so we can read it again and again. Adam will do that with the social story I write for him before his surgery; he’ll run his fingers along the lines of facts, touching the drawings and bits of things that I offer to represent what can only really be known experientially.
By using the word story I do not mean to indicate any falseness; any writer can tell you that stories tell the truth, no matter how they go about it, whether they intend to or not. As a Christian, I believe God’s story tells only the absolute truth.
He guides me along the right paths for His Name’s sake.
Madeline L’Engle wrote that, “when the powers of this world denigrate and deny the value of story, life loses much of its meaning,” explaining that, as a child, she herself relied on stories “to learn to live” (Walking on Water).
We all live as strangers and children here, and so it’s critical to rely on stories when preparing someone who can’t quite understand exactly what you’re trying to say, someone whose limited experience hasn’t really included anything like the marvels (or difficulties) you’re trying to share. You communicate with words they know, drawing their attention to things they can see and touch. You prepare them that way, and then you stay beside them through the unknown places. You make sure they can find your face when their eyes open.
Even though I walk through the darkest valley, I will fear no evil, for you are with me.
Adam’s social story will say, “When you wake up, I will be there.”
