Considering autism, the birds and the bees

An Autistic's guide to autism: Self-regulation: how autistic people find alternative ways to cope

When I was young, around the right age for elementary school, I used to chew on straws. Chewing on straws was a solution to a problem that had been vexing my mother to no end. She used to buy me rugby shirts with soft plastic buttons. I would chew on them in class until they became flat disks under the repeated pressure of my jaw, losing the ability to keep my shirt in place. She tried to get me to stop chewing on my clothes by giving me shirts without the plastic buttons, but I only moved my attention farther up the shirt, chewing on the collar instead. Eventually she found a solution in plastic straws. They were cheap to buy in bulk, and served the same purpose that my shirts did.
When I have something with which to occupy myself, something to fidget in my hands or something to roll around in my mouth, I am better able to focus on tasks and feel calmer than I would otherwise. I only later learned that these and other behaviors of mine are widely practiced by other autistic people and are a common way that we autistics manage our anxiety and self-regulate. The clinical literature refers to these as “self-stimulatory behaviors,” but that is a long and cumbersome phrase, so it has been shortened by many to simply “stim behavior” or “stimming.”
For me, stimming serves best as a way of self-regulating. In the morning I wake up early, shower, brush my teeth and go through a stim-based systems check to get ready for the day. Sometimes my systems check consists of me wiggling around a bit to get an idea of how my body is feeling. Sometimes I circumambulate through my room. The regular and predictable laps around the small space free my mind up to plan for the day. On other days, I just make babbling, nonsensical noises—not so loud as to wake my neighbors—that give little jolts to my body that feel nice and help bring down my anxiety when I’m feeling stressed. All of this I do alone. This piece is probably the first time I have ever discussed my morning routine in a public way.
The only stim behaviors I ever engage in publicly are those that I can explain away as just a need to fidget. At a young age, I, like many autistic children, was taught not to stim, though not in so many words. I was taught that stimming was distracting, embarrassing or inappropriate and, in particular, that it was bad. Though there are certainly stim behaviors that have obvious drawbacks—such as self-injurious stims like pounding one’s chest—stimming is one of the best ways that we as autistic individuals have of self-regulating. In a world that we find overwhelming, stimming provides comforting and predictable sensory input. One day, I hope to see stimming more widely understood and accepted.

An Autistic's guide to autism: Evaluating the underrepresentation of autism in the media

When I was young, I didn’t know a lot of people like me. This is not to say that I knew no one who I had anything in common with, but that I knew very few people who thought and acted in the same way I did. There were some children among my peers I could relate to, like the kid I met at my local library who paced when he was excited in the same way I did. We once had a very engaging conversation while circumambulating around his kitchen table, always opposite one another, as our mothers watched in bemusement. Or the child I met at swim lessons who liked getting his face wet just as much as I did (which is to say, not at all).
These moments of connection, while nice, were few and far between. When faced with this lack of connection, I turned to media—TV shows, movies and books—to try to find characters I could relate to—characters who were like me. I did find some, like Data and Mr. Spock from Star Trek (two of my childhood heroes), but they were the exceptions rather than the rule when it came to characters to whom I felt I could relate. As a result, I often felt that I needed to be more like the characters I did see so much more often. That their behaviors and ways of being had to become my own—that in a way there was something wrong with the way I was. If there wasn’t, why didn’t I know or see more people like me?
As I’ve grown, I’ve discovered two reasons for this seeming scarcity of relatable figures in my life. Both stem from issues of representation in our society.
The first reason stems from how society views autism. For those of you who may not know, I am autistic. While as an adult I am very proud of that identity, as a child I was not. I was taught, through the actions and reactions of others, that autism was not something to be talked about in public places. That it was something to be kept secret, hidden, only revealed to those who needed to know. As I grew, I realized that others had received the same message that I had. Those who were most like me—who shared the same autistic experience that I had and still do—didn’t feel they could talk about it. Many autistic people have been left feeling isolated because of this taboo surrounding autism, a true struggle for those of us with less than stellar social skills to begin with.
The second reason involves the media. Issues of representation have come to stark attention in recent years, and the autistic are among the large number of groups who are often underrepresented. Only very recently have I found shows or movies with characters who are openly, explicitly autistic. However, those who are often the subjects of some medical drama, the plot revolving around trying to treat some perceived wrong that apparently plagues the child. While there has been slight improvement in media representation since my childhood, I hope to live to see autistic people, along with so many underrepresented groups, come to flourish in a world in which they are well represented.

An Autistic's guide to autism

Considering autism, the birds and the bees

This piece represents the opinion of the author:

Ben York

Columnist

October 14, 2016

When I was first diagnosed with autism, there were very few resources concerning how to navigate the autistic experience for parents and autistic people. When I received my diagnosis at the age of 4, my parents found that resources for them, as the parents of an autistic child, were few and far between. As time has passed, as awareness has spread and as care—providing institutions have realized that the autistic population is one that needs significant support, resources for autistic children have become more widely available. Every day, more educators, doctors and others who work with autistic children are learning how to better provide for the autistic people they work with. All of this is good. A lot of progress has been made on improving the lives of autistic people in my lifetime, and while there is still a lot of work that needs to be done, this progress is not to be taken lightly.

However—and this is a big “however”—while the resources for autistic children have steadily increased, the resources for autistic teens and adults have stagnated. Work on autism and work for autistic people is almost exclusively focused on services and resources for children. Autism, whether explicitly or implicitly, is viewed as a childhood disorder. As a result, the experiences and concerns of autistic adults are often forgotten and the resources that are available to us are often almost indistinguishable from those available to autistic children. Sometimes, however, the problems that autistic adults face are truly “adult.”

I must pause here to make a confession. I am going to talk about sex now. I have written and rewritten this section of my article some twenty times, trying to make this topic seem less uncomfortable, and I must now admit that it is beyond my abilities as a writer to do so. This is partly because for most people the subject is itself uncomfortable. Sex is not something that we as a society often talk about. References to sex are commonplace and seem completely acceptable to the general population, but discussion of the actual mechanics of the act—how sex actually works—is still very much taboo. Yet, for autistic adults, explicit instruction is exactly what we need—and precisely what we are not getting.

When I came to college I was scared of sex. I had, of course, a basic understanding of what sex is and how it works. I had talked about sex with my parents, in my high school health class and with friends who had begun to explore physically intimate relationships. However, all of these voices were from the perspective of non-autistic people and could not address some of my deepest fears.

I have sensory processing difficulties. Intense physical experiences are often overwhelming for me. How was I going to react to what might arguably be the most physically intense thing that two people can do with each other? I also have difficulty picking up on body language and tonal cues. How was I going to know when my partner was and was not giving me non-verbal consent? And when their consent was verbal, could I be sure that it was enthusiastic? That they genuinely wanted to be physically intimate with me and were not just giving in to a pressure I didn’t know I was exerting on them?

No one in my life could assuage these concerns and I could find no resources on the topic that offered advice specifically to autistic people. I was terrified of sex, because I did not know if this very intimate and by all accounts pleasurable act was something that I could participate in without harming my partner or myself. That feeling was not so fun.

Since first coming to Bowdoin, those sexual experiences that I have had have been overwhelmingly positive. Many of my concerns have been assuaged simply through long conversations and by taking things slow, and I have now learned through personal experience that there is no such thing as too much consent. While access to resources about sex is no longer a concern for me, it is still a concern for many autistic adults, and until those resources become widely available, there will still be many young autistic adults who are concerned about having sex. Concerned, like I was, about something they need not fear.

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