Evaluating the underrepresentation of autism in the media

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: Highlighting the importance of autistic community in a neurotypical world

When I was young, I didn’t have many friends. Until about halfway through my first year of high school, in any given year, there were only about three people in my life that I felt close to who were not members of my family. As I have grown and become better at making friends, my circle of intimate, non-familial relationships has widened. While this personal and interpersonal growth has been wonderful, I have still felt a certain sense of loneliness. Although my friend group expanded, I still felt that I was unique amongst my peers—included, but different. That was, at least, until I met my friend Kathleen.
Kathleen and I were put on the same floor of West Hall our first year. When I first mentioned to my floor that I was autistic—over a meal I believe, which is typically when the whole autism thing comes to light—Kathleen spoke up and said that she too was autistic. What followed was, and I hope continues to be, a wonderful friendship.
Kathleen wears the same thing every day: a dress or skirt, a T-shirt, and a vest. A chain hang around her neck, attached to which is the face of a strapless watch and a small, simple cross, all of which is overlaid with a lanyard, onto which she has attached her OneCard. Around her wrists is a collection of bands and bracelets, which are mostly made of paper. Often times when she is thinking, she will use one hand to twirl a bracelet around the other. I do not believe that she has ever once purposefully looked me the eye; when she listens to you speak her eyes are often focused on your right ear, or looking into the middle distance. This is not to say that she is not a good listener. One does not need their eyes to hear.
When eating, Kathleen prefers simple foods. At the dining hall, she will often have only two or three foods on her plate, all separated so as not to touch each other. When she can, she walks barefoot, which she has been reprimanded for several times while on campus. When writing essays she much prefers a typewriter to a computer because the computer screen hurts her eyes. And when talking with others, she often asks for statements to be rephrased, having possibly missed a joke or the use of sarcasm. She is, in general and in particular, quite an autistic person.
For much of our lives, both she and I have faced adversity because of traits like these. Being told that we are ungrateful because we can only eat certain foods. Being told that we are inflexible because we hold to routines and patterns. Being told to “get over it” when someone touches us and scares us. When alone, these are often the traits that isolate us and make things difficult for us. But when we are together, we revel in these commonalities.
We once had a long conversation about food and our complicated relationship with it. One of us mentioned fruit salad, and we were both overjoyed to find that we could both tell when the fruits had and had not been touching each other and mixing together. We also discovered that it bothered both of us very much when they did. The moment was very particular, very specific, but we made a special kind of connection because of it. Like many other experiences that we would later identity, neither of us had ever met another person who understood that very particular discomfort, that very particular experience and finding some who did understand was like finding one’s parent or guardian in a crowded mall: the relief of a familiar face in a sea of the strange and unknown. Finally, we had each found another person that understood us. Perhaps not entirely (we are by no means the same person), but in a way that no one else did.
Our friendship has quickly grown over the past year and I hope it will continue to grow beyond that. Her presence in my life has highlighted to me the importance of community—and especially autistic community—in my life. To share in a set of common experiences, universal to us and yet incomprehensible to others, has made navigating this neurotypical world a whole lot easier. I can only hope our little community of two will continue to grow—the more the merrier.

An Autistic's guide to autism

Evaluating the underrepresentation of autism in the media

October 28, 2016

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.

Comments are permanently closed.