Self-regulation: how autistic people find alternative ways to cope

An Autistic's guide to autism: Dividing autism into high and low-functioning individuals

In the parlances of many medical and educational professionals, as well as among the majority of autistic and non-autistic individuals who speak and write about autism, autistic individuals are classified into two broad categories: those of high functioning and low functioning individuals. The stereotypical high functioning individual is often—though not always—a person who would be considered to have Asperger’s Syndrome. They are socially inept, often extremely quirky and with an interest in a subject so intense that they can often talk about nothing else. The stereotypical low functioning autistic person is much more obviously disabled. They may be limited in their ability to walk, talk or have any real control over their gross motor functions. Their intelligence will be low, and they will not be able to take care of themselves: they will, in short, be disabled.
Any actual discussions or characterizations of autism are of course more nuanced than this, but this portrayal of autism condenses a number of stereotypes associated with functioning labels (that is, high functioning and low functioning autism). While autism composes a spectrum of different behaviors and individuals, it is often lumped in this way into two categories: quirky and disabled. This imagined dichotomy is not only inaccurate but also at times harmful to autistic individuals, not only because it marginalizes the struggles of those who are well adapted, but also downplays the true strengths of those whose difficulties are greater.
First and foremost, functioning labels do not accurately classify or describe the autistic experience. Many autistic people do not fall anywhere near either of the boxes that functioning labels might place them in, so these terms do not provide accurate labels for them. For instance, a person who often passes for neurotypical, but in certain high stress situations is very limited in their ability to function. Or, take the autistic person who is mute and can’t make eye contact, yet writes masterful poetry and teaches online classes on writing. Or the autistic person who must use a wheelchair because they do not have full motor control, and yet has an incredible intellect. Functioning labels leave no room for these individuals, whose spectrum of abilities give autism its full name.
Secondly, and more importantly, the use of functioning labels reinforces an assumption about how people should be that is fundamentally incorrect. That is that there is a right and a wrong way for a brain to function. By using terms such as high functioning and low functioning autism, we make the assumption that there is a level of functioning that these labels approach, high functioning being closer to the ideal, and low functioning being farther away. However, there is no such thing as an ideal brain or an ideal way of being. That is what makes humans so diverse. And diversity is a great thing.

An Autistic's guide to autism: Considering autism, the birds and the bees

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.

An Autistic's guide to autism

Self-regulation: how autistic people find alternative ways to cope

This piece represents the opinion of the author:

Ben York

Columnist

September 23, 2016

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.

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