Monday, February 6, 2017

Autism and the Burden of Social Reciprocity

Sparrow R. Jones
unstrangemind.com

The fall of the Berlin Wall - November 1989
Breaking Down Walls That Shouldn't Exist
Photo © Gavin Stewart, Creative Commons license.
[image description: People using a wooden ladder
to climb over the Berlin Wall during its 1989 fall.]
One of the images that comes up again and again in articles about autism and Autistic people are photographs of children behind panes of textured glass. Their hands are usually pressed against the glass and their faces are distorted beyond recognition by the swirls and ridges in the surface of the glass. The images are meant to symbolize how we are “trapped inside autism” just waiting to be broken free from our “prison.” Journalists and their editors love those images; Autistic adults tend to really hate them.

Years ago, when I was struggling hard with a deep self-loathing that I had projected onto my autism diagnosis, I embraced those images as well. I had been terribly, sometimes violently, bullied and ostracized by my age peers. I had been mistreated by many of my teachers, some of whom openly expressed their disgust with me.  My fourth grade teacher, for example, put my desk inside a giant cardboard box and told my classmates that I had to sit inside the box because it made her sick to look at me.

I spent my childhood, roughly age 5 to age 15, in therapy. Even though no one told me that I am Autistic, I knew there was “something wrong” with me because no one else I knew admitted to regular visits to a child psychologist. So when the children at school rejected me with ever-increasing demonstrations of cruelty I naturally assumed that I was at fault. I was even explicitly told by school faculty and family members that I was bringing all the bullying on myself by “insisting on being so different.” It’s a familiar life story: When I talk about these things with groups of other Autistic adults, lots of heads nod, and I hear lots of sad and angry recountings of similar stories. When I type my childhood stories online, the flood of “me too”s that bursts forth is staggering.

We Autistics get bullied and ostracized at a depressingly high rate. If you are Autistic, you’re probably nodding your head right now. If you are the parent of an Autistic, you’re probably nodding along as well. It breaks your heart to see your child so excluded, right? It breaks our hearts, too, living that reality.

That “trapped behind glass”  image resonated with me because I felt like the painted bird described in Jerzy Kosinski’s novel of the same name. In The Painted Bird, a grim tale of a young Polish boy orphaned at the height of WWII and wandering the countryside viewing and experiencing wartime atrocities, Kosinski tells a brief, symbolic story of a sadistic game in which a bird is captured and painted a different color. When released, the bird follows its instinct to flock and tries to rejoin the other birds. Because the painted bird looks and smells so different, however, the flock follows its instinct to protect the group against outsiders. The flock peck at the painted bird to chase it away, but the instinct to be with the flock is so strong that the painted bird persists in the face of pain and ostracism, trying again and again to join the other birds until it is pecked to death.

Underlining the symbolism of staring through a glass barrier at others enjoying a social life that I was unable to participate in, I felt a deep kinship with Nick Carraway, the narrator of F. Scott Fitzgerald’s novel, The Great Gatsby, which I first read when I was 13 years old. At one point in the novel, Nick mentally goes outside and looks in through the window. The passage describes his feelings of distance from the raucous party life he has found himself in and he describes feeling isolated from everyone else:

"...high over the city our line of yellow windows must have contributed their share of human secrecy to the casual watcher in the darkening streets, and I was him too, looking up and wondering. I was within and without, simultaneously enchanted and repelled by the inexhaustible variety of life."

I latched onto that image as it contained such piercing elements of my own lifelong sense of isolation from others. I felt enchanted by the lives those around me had, and the ease with which they seemed to discern what was expected of them, and the grace with which they lived up to those expectations. Yes, the people around me growing up struggled, too. But their struggles were so different from mine and on such a different scale from mine that they were virtually invisible to me.

Yet also, and much more strongly than the enchantment, I felt repelled. I felt that I was repulsive to others, and I'm pretty sure I was, based on how they treated me. And I felt repulsed by them. I hated so much of what they did and said, yet I wanted more deeply than anything to be accepted by them, like the painted bird I was. They were repulsive and I was repulsive and the entire social world seemed little more than a cesspool of filth. My only solace was long walks alone in the woods and time spent with friendly animals.

Given these formative experiences, it is little wonder that I so identified with the alienating and objectifying symbol of autism as the child-trapped-behind-glass. My entire existence had groomed me to take 100% responsibility for my mistreatment and isolation. When I was finally told that I am Autistic, I was angry. I wanted to be fixed. I wanted to be better. I wanted to know how to fit in and be accepted by others. And my response to being told that I'm Autistic was a huge raise in my already well-cultivated self-disgust. I wanted some kind of pill or therapy that would make me “normal” and the doctor was telling me that I would never be normal, that this thing that had dogged me my entire life was... me. It was a deeply rooted part of me that was never going to go away.

I went through a lot of depression and anger and self-loathing and internalized blame for many years to get to where I am today. It was hard work to overcome the effects of all that bullying and isolation, and accept my Autistic brain and nervous system as a normal variation in the great diversity of human expression, to love myself for who I am right now, to strive to become the best person I can be without feeling pressure -- internal or external -- to try to pretend to be someone or something I am not. I still have plenty of moments when I feel like Nick Carraway with my face pressed against the glass, drawn to others but separated from them by invisible barriers I can’t figure out how to get past. But I no longer live full-time outside that mental window. I have found connection, and in the many cases when I haven’t been able to figure out a way into the party I’ve found greater joy focusing on my strong interests and working toward goals that are important to me. I am not as lonely as I used to be, despite still being every bit as Autistic as ever. A key factor in coming to accept and love myself has been letting go of my assumed responsibility to carry all the blame for my social failings.

So it was with great gratitude that I read the report of a new meta-study of the first impressions that non-autistic people have of Autistic children and adults. Researchers in fields related to psychology, communication disorders, and brain sciences from the University of Texas at Dallas, Indiana University, and Emerson College collaborated on an evaluation of three rigorous studies examining the differences in the first impressions people have of autistic and non-autistic people. Their conclusion should surprise no one: across several rating factors, at different ages, whether viewed in still photographs captured during unscripted conversations or in audio-visual format during auditions or free description of emotional past experiences, Autistic men and women were consistently rated lower by observers.

In short, people have much less interest in getting to know Autistic people, based on even the briefest of first impressions. Women were judged more harshly than men in these experimental scenarios. Young boys, around age 12, were judged just as harshly by adults as by their age peers.

This is scientific validation of my personal choice to let go of some of the blame I had been shouldering all my life for my social struggles. In the discussion section of their paper, the study authors write that, “[t]he reluctance of TD [typically developing] individuals to engage in social interactions with their ASD [autism spectrum disorder] peers further limits the opportunities for individuals with ASD to practice their already fragile social skills. This can have a significant negative impact on the ability of socially aware and socially interested individuals with ASD to improve their social communication abilities and work toward more successful social integration.”

In other words, Autistic people can’t take all the blame for underdeveloped social skills because non-autistic people actually are actively avoiding us, limiting our access to opportunities to practice being social in real-world situations. The study authors found that Autistic people have every bit as much desire for friendship and human contact as non-autistic people and our UCLA loneliness scores were significantly higher than non-autistic people’s, but our ability to socialize is limited every bit as much by social ostracization from others as it is by our own neurology and the challenges to socialization it can present for us.

The studies repeatedly underlined the importance of first impressions. A negative first impression held true no matter how much further exposure a person was given to reassess that first impression. But there was one scenario in which the Autistic people left a positive first impression: when people read a transcript of their words instead of seeing and hearing the Autistic people saying those words, observers rated them as more likable and more intelligent. In fact, in the scenario where observers just read the written words of Autistic and non-autistic people, they rated both groups the same. For non-autistic people, the written transcripts were their lowest-rated mode of communication, although only by a small amount. For Autistic people, the written transcripts were their highest-rated mode of communication by a very significant margin.

Written communication is the great social equalizer.

Remember this if you start to fear your Autistic child is spending too much time interacting with others online and not enough time interacting with others face-to-face.  Online communication is a valid accommodation for the social disability that comes with being Autistic.  We need online interaction and this meta-study demonstrates exactly why that is the case.

I couldn’t help wondering, since the study showed the durability of first impressions and the positive response to the written words of Autistics, with all visual and auditory cues removed, could we mitigate childhood bullying in any way by having a class of students meet first online, in text, and form their first impressions of one another in that format before ever meeting face-to-face?

In the early ‘80s, I first began communicating with others online, through internet bulletin boards called BBSes. You could hook your computer -- mine was a Commodore 64 -- to your telephone with a modem and call someone else’s computer. Once there, you could type messages to other people and even access computers all over the world through interfaces like FIDOnet. Getting online was revolutionary and may have saved my life.

When I started getting on bulletin boards and typing to other people, I was completely friendless. Not only was I rejected for looking, sounding, and acting weird, but I was a bed-wetter up to age 15 so I reeked of urine every day because I spent my nights marinating in it, soaking it into my pores and waking with the wrinkly fingers and toes of someone who’s spent too long in the bathtub.  Through the day, I would sweat my own pee back out, much like an alcoholic reeks of gin because it’s coming out through their pores. I had terrible hygiene on top of that because I hated the shower and never had time in the morning for a bath. My hair was uncombed and in my eyes. I took no care with my clothes. Of course I was friendless: I was kind of disgusting to be around.

But when I got online, no one could see (or smell) that about me. All they could see was my words and ideas, and that was what people judged me by. For the first time in my life, I was not found lacking. I made friends of all ages. I was respected and liked. The difference between offline and online communication could not have been more dramatic.

This new research demonstrates that Autistic people get the same isolating treatment when no one can smell them. The researchers found that, other than written communication, observers were less interested in getting to know Autistic people whether they only saw them, only heard them, only looked at snapshots of them. The criteria for rejection were based on multiple factors: physical, auditory, eye gaze, facial expressions, clothing, grooming, posture, movement -- an entire potpourri of human expression. Everything except the actual content of their communication.

The take-aways? Autistic people have valid things to say and people want to listen with respect, if they are helped to get past our awkward appearance and presentation. The blame for social struggles is not one-sided, but shared by everyone, just as is the case in any human interaction. It’s not just us.

We, society -- parents, teachers, professionals, everyone -- must work to help Autistics integrate better with the world. Understanding that it’s not about “fixing” Autistic people but rather about finding ways for people to interact that don’t sabotage Autistics right out of the gate -- this is crucial to that work of integration. This new research, and the future research that will build on the foundation these researchers have laid with this study, must be shared and understood if we are ever going to combat the bullying, loneliness, unemployment, school drop-out rates, and so many other barriers to a satisfying life that Autistic people are confronted with.

It’s time for non-autistics to accept their share of the burden of social reciprocity. It’s time to admit that the world has not been meeting us half-way. It’s time for people to learn to be more willing to accept others who are different from them. Stop shutting us out and blaming us for the invisible barriers between us. We can’t shatter that glass wall until we acknowledge that it’s not solely an Autistic thing: you’ve erected that wall of glass between us every bit as much as we have. Let’s tear down the wall together.