A friend brought this heartening (and yet somewhat sad) piece on autism from The Atlantic to my attention this weekend.
Particularly maddening are the descriptions from time gone by of the emotional capabilities of people with autism. I remembering hearing things like this — to the extent any of them were ever mentioned — in the 1970s and 1980s, before such a thing as Asprger’s existed and people with autism were considered hopeless cases and lost causes, fit only for institutional care.
NeuroTribes amasses a disturbing number of statements by autism researchers who seem unable to make the trip themselves. One clinician describes autism as a terminal illness and autistic children as dead souls. Others consider them “shells” or “husks.” The most unnerving revelation occurs when Silberman profiles Ivar Lovaas, the developer of a common therapy known as Applied Behavior Analysis. In a 1974 interview, Lovaas says that autistic children “are not people in the psychological sense.” He combats an autistic child’s self-injurious behavior by striking her, and his therapy rooms deliver corrective shocks through gridded floors. Spoons of sherbet serve as rewards—a method that seems less sweet when Lovaas reports that “it is a pleasure to work with a child who is on mild food deprivation.” Today’s behavioral therapies tend toward Lovaas-lite, an exacting but benign regimen of small treats, but just last year the Food and Drug Administration held a panel to discuss the use of electrical shock to modify self-injuring and aggressive behavior among autistic patients. Although representatives of a Massachusetts clinic argued it was a necessary treatment of last resort, the panel recommended banning the apparatus used in the procedure.
I’m puzzled by such statements. I’m not entirely sure how anyone could arrive at them, unless the clinical study of human being is so utterly detached from actually being human, and meeting and experiencing other human beings, that it is simply incapable of actually seeing what is human in someone who isn’t “normal.”
And I wouldn’t doubt that. There’s lots to be gained from the “scientific study” of people, but science sees things as objects.
I’m reminded of an encounter with a young autistic boy Jennifer and I took care of for a time when we were in seminary.
His name was Georgi, and his mother was working on an MBA at the University of Chicago’s Booth School of Business. He was 10, and his mother was not married to the father. Jennifer babysat Georgi after school for a bit, and then his mother had to go to London for a series of job interviews one week, and some time later, she had to go on a week-long class retreat.
So, we got to take care of Georgi in our apartment for two weeks.
It took a little work, particularly on my part (I’d never ever done anything remotely resembling parenting before). The first night we had no schedule and no ritual and it was a disaster. Georgi was up to all hours banging around and bouncing off things.
But the second night, we figured it out. He would help me set the coffee maker and get the coffee ready for tomorrow morning (Georgi would run the grinder for exactly one minute), and then Jennifer would help him brush his teeth, wash up, and go to the bathroom, and then I’d tuck Georgi in bed, read him a chapter (each night) from Winnie the Pooh. And then we’d pray.
And he slept. Soundly. All night.
Georgi would play with my legos. By play, I mean he’d get out my lego set, get out the instructions, and build to the design. He wouldn’t really play with it, not like I did. And he wouldn’t make things up, either. He needed the instructions.
Georgi liked listening to my songs. He was also obsessed with videos of elevators, and it was taking care of Georgi that I learned one of the greatest gifts of the Internet is that it allowed autistic people to connect through their obsessions. Who knew there was a whole community of people out there took videos of elevator rides, pointing out all the features of elevators and the buildings they were in?
Georgi rarely spoke in complete sentences. Much of his thinking was very concrete — one night, Jen and I sat with him in a seminary classroom while he drew corporate logos on the chalkboard.
But he could talk in complete sentences. For the time we took care of Georgi, Jennifer and I allowed ourselves one cocktail each night, because caring for Georgi was draining. Our friend (and fellow seminarian) Joy would occasionally come over, drink with us, and let Georgi play with her iPhone. Which Georgi really loved, between the games and the elevator videos on Youtube.
One evening, I got the cocktail shaker down from the cupboard and Georgi got excited.
“Joy must be coming over!” he said. And ran to the window to wait for her.
The emotional connection came one Saturday morning. I’d just come back from one of my typical unpleasant encounters with the ELCA’s Metropolitan Washington DC candidacy committee — the folks overseeing my now-defunct process to become a pastor in the Evangelical Lutheran Church in America — and a good friend, Mark (who is now a pastor in Kansas), wanted to know what happened.
Well, I got angry. I yelled. And then I started crying. Because it was a miserable and difficult — even abusive — process. (Lutheran church bureaucrats are incredibly good at being callous and abusive.) After we all made sure the Georgi knew I wasn’t angry at him, I went into my bedroom and sat in my comfy chair to regain my composure.
That’s when it happened.
Georgi came in, sat on the bed across from me, and put his hand on mine. And he held my hand for a bit. He never made eye contact, and he never said anything, but he just sat there with me, holding my hand. Some combination of “it’s going to be okay” and “I care that you hurt.” It was a very compassionate response. A very empathetic one.
It still makes me tear up when I think about it, that amazing moment. I will never forget it as long as I live.
So, “not people in the psychological sense?” What kind of person is willing — is able — to so carelessly and easily say such a thing? What attention aren’t they paying? How important is it that human beings fit, or can be bent or folded, into the precious scientific categories we’ve made for ourselves?
We are lesser people for having made folks with autism solely the objects of study and care. (Just as we are lesser people for having reduced any human being to that status of object fit only for study, or worse, consumption, abandonment, or destruction.) For failing to see how they are human, and how their humanity adds to ours, makes us whole, a complete humanity. And for failing to see what autism tells us about God — the very same God in whose image Georgi is made. Whole and complete, without flaw or blemish, a child of the living God.
I’m saddened and angry that our pitiless modernity has done this to so many people, bent and broken and destroyed so many human lives. But I’m also glad people with autism are claiming their own identities. Creating their own communities. Making sense of their own lives. Writing their own stories.
Asserting their humanity.