Preference as a Tool to Identify Areas for Modification, Accommodation, or Avoidance
Trigger warning: The video embedded below comes from the National Autistic Society’s series “Too Much Information,” which presents the sensory and social perspective of autistic people. If you are sensitive to sensory over-stimulation, you might want to skip the video.
During the first few moments of viewing, I felt delight at discovering what seemed to me to be a solution for managing my specific needs, especially around sensory and social communication processing. “I prefer not to” could potentially be the perfect thing to say when I was being asked to do something that was too much for me. When my mom and older brother laughed affectionately along with Bartleby (or so it seemed to me), I thought that maybe this approach would even be acceptable, along with practical. But their laughing along with soon turned to laughing at, and laughing at turned to incomprehension, and incomprehension turned to scorn. By the film’s tragic ending, I was alone in my identification with Bartleby, and I realized that his response to a chaotic and overwhelming world was not one I could adopt.
The story, a 19th Century portrait of an autistic man buffeted by sensory and social assault, ends tragically. I came away from the viewing with the lesson that if the world would not accommodate me, I would need to accommodate the world.
Bartleby’s approach was to say “no,” in the politest way he could, when startled or surprised. Judy Endow brilliantly interprets an autistic person’s “no”:
Often ‘no’ or ‘I don’t know’ [or Bartleby’s ‘I prefer not’] is a default response when the autistic neurology experiences a surprise. A neurological surprise is anything unanticipated in the moment.Endow, Judy, “Autistic Neurology and Behavior.” 29 Dec. 2016.
I made great efforts as a child to be able to say, “yes,” but I think that at many times, “no” or silence remained my default. My boyfriend, several years after we’d been together, began to preface every new or different suggestion he would make with “I know that you will say no to this.” Somehow, his saying that opened my eyes and also opened a space so I could examine what he was actually saying, rather than reacting to the neurological surprise of something different.
While I approached much of my life with the idea that “yes” was the best approach, and that, since the world won’t accommodate me, I should accommodate the world, I have in the last 15 years come to value the response of “no.” (I’ve been known as the “Diva of ‘No'” at my office!) I have recently begun to explore my preferences as a means of identifying where I need accommodations or modifications. I am taking note of the times when, internally, I say to myself, “I prefer not.”
When I say, “I prefer not to go to the mall,” what I really mean is that my experience is like this:
While I have not had a meltdown in public, the sensory and social overload I experience is what the child in this video experiences, and after a trip to the mall or any crowded public space, I will likely meltdown alone in the car or later in the garden. I can put on a brave face while suffering through the overload, but afterward, to recover, I will need to release the discomfort, and tears help. Better yet is to avoid exposure to those types of environments and situations. My default “I prefer not” to trips to the malls or events with crowds is generally something I can accommodate by simply not going. Occasionally, for work, I might need to go to an event with hundreds of people, and if I do, then I know that I will need to take time and measures afterwards to recover.
When I say, “I prefer not to attend meetings with more than five people,” what I mean is that the social communication processing required by those types of situations will exceed my capacity. I won’t be able to take it all in. I will also, even if I am doing my very best camouflaging, say something that somehow doesn’t sit right with somebody.
I have strategies: I’ll bring something I can fidget with (the caps of pens work great for this); I’ll doodle; I’ll jot down notes of what I want to say so that I can try to avoid interrupting, which is hard if not impossible (I never seem to know when there is an appropriate opening.); I’ll remember to smile; I’ll check the volume of my voice so I’m not too loud nor too soft; I’ll watch that my fidgets aren’t too obvious. OK. I’m exhausted already just listing everything I have to do to get through a meeting, and I haven’t even gotten to the auditory tracking, other social communication processing issues, and sensory processing considerations. Meetings are hard.
When possible, I listen to my “I prefer not” and skip large meetings or find a way to be excused from them. Sometimes, like last Friday, I will choose to go, when it seems professionally important. I went to a meeting for my online teaching on Friday. I picked up some good contextual information, like I expected I would, and I made an appearance. I also, even still, five days, two meltdowns, and many garden-hours later, still feel a little post-meeting-zone. I’m trying not to dwell on the comment I made at the meeting’s end which seemed helpful to me (about ways of gauging student engagement through the tone of the participation in text-based communication in the online class) which seemed to cause a wall of frowns from those listening. I’m still puzzled. I’m trying not to dwell on how, as soon as the meeting was over, I bolted out the door onto the path beneath the wide open sky, my mind reaching for sky’s enveloping silence, rather than staying to chat it up with colleagues and supervisor.
I am trying to simply put that meeting in the past and move on.
When I say “I prefer not to use discord [voice chat]” while playing online, what I mean is that I have a hard time tracking what is being said while I am concentrating on the game, and once my social and auditory-information processing become stretched beyond capacity, I stop having fun. I have discovered a modification I can use, which is to listen only and leave my mic off, and I’ve learned a trick of attention I can apply, pretending that the voices are in the background, like the sound from a youtube video my boyfriend is watching across the room. With this modification and trick, I find that I can handle listening to live voice chat. As long as it’s not two-way, as long as I can consider the voices as background commentary (rather than actual communication), I seem to be able to process it OK without getting overwhelmed.
Like most of us, I have many more preferences. Rather than discounting them and pushing myself to comply with activities “I prefer not to,” I’m allowing myself to regard my preferences. These are indications of areas where the discomfort probably stems from exceeding my capacity or exposing me to “too much”.
Growing up, I was taught to disregard discomfort. I was encouraged, and even forced, to do things whether they were comfortable or not. Wear clothes with scratchy labels, lace, and seams. Sit next to your brother, even when he tickles you and doesn’t stop. Go to the mother-daughter tea (in uncomfortable clothes) and listen and make an effort to participate in the endless chat about uninteresting things–and don’t talk about anything you’re remotely interested in. Perform in the piano recital. Go to the fireworks on Fourth of July. You’re a baby and “overly sensitive” if you cry at the loud noises. Shutting down is simply being stubborn. Push yourself. Stretch yourself. Disregard your comfort. You are just like everyone else, and if they enjoy this, you should, too.
When Glen Gould was asked in an interview by Yehudi Menuhin why he stopped performing, Gould replied that it made him uncomfortable. Menuhin replied that he didn’t see that as any reason not to do it. Gould replied with a laugh that it was every reason not to do it!
It is important to respect our comfort. When we’re asked to do something we find uncomfortable, something we “prefer not” to do, we can explore the root of the discomfort. Is it because this will exceed our capacity? Will we be damaged? (And stress is very damaging.) How long will it take us to recover? Will modifications and accommodations help reduce the damage and recovery time?
I’m allowing myself to respect my preferences. It’s likely that I won’t go to a mall again, nor will I go to a movie theater. I won’t often answer the phone. I will probably fly to visit family this winter, but I’ll be prepared with a range of strategies and modifications I can put in place.
The world seems better now, a little softer and more accommodating to those of us who process differently, than it was when Melville wrote “Bartleby the Scrivener”. But it’s still harsh enough. We may know more about autism and differences in social and sensory processing, but we still live in a world that was not created by us, for us. We still live in a world that, for the most part, will not accommodate us.
That’s why we need to be able to say no. Now that I’m sixty, I’m going to let myself say what I wanted to say when I was twelve, “I prefer not.”