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An Autistic's guide to autism: Navigating a world where some people just don't seem to get autism
When I was 17, I had to go to the local eye doctor for an emergency check up. My eye had been bothering me for several days because pressure had built up in it (which I would find out about later was possibly related to seasonal allergies). Because my eye was so sensitive, and because of my already rocky relationship with sensory input, I had a difficult time letting the doctor take a look at my eye. My mother had come with me, and we both explained to the doctor that I was autistic so that he would understand when I had difficulty with some of the more physical tests I would have to undergo.
At one point, he had to measure the pressure in my eye, and to do so he had to touch the surface of it with a finely-tuned instrument. I already do not normally like people touching me, much less a metallic probe poking around in such a sensitive area. After trying repeatedly to sit still without flinching, the stress of the situation began to overwhelm me. The strain I was putting on my body to not instinctively pull away made me start to cry. It was at this point that the eye doctor told me, “you don’t have to make a scene for your mother.”
Although this story requires a lot of context before it can be retold, I like to use this as an example of when someone just doesn’t understand autism. Even after being told about my sensory issues and seeing first-hand how the testing was affecting me, the eye doctor told me—a young man close to adulthood—to not make a scene, as though I were a child upset that I was not getting my way.
This kind of situation is a familiar one for many autistic people and their families. Whether a medical professional, a teacher, a neighbor or a friend’s parent, there is always someone in an autistic person’s life who doesn’t quite understand what it means to be autistic. These are the people who have challenged me when I say there are certain foods I can’t eat, claiming that I would “grow into them,” or the people who told my parents when I was young that if they had just raised me better, then I wouldn’t act the way I did.
For some people, this lack of understanding correlates with a lack of awareness. Many people just don’t know what autism is or may have never even heard the word. Without any context for my or other autistics’ behavior, we can seem like odd and unpredictable folks. At times, this lack of understanding stems from a more basic level. For some, the intense world of the autistic person is so far from their own experience that even with an awareness of the topic, they lack the instincts necessary to predict and manage autistic behaviors.
While both of these kinds of deficiencies are understandable given societal levels of awareness about autism, it can make life difficult for those who are autistic. Having to justify behaviors that to us are natural can be difficult, and at times impossible. This is especially true for children. However, there is a bright side. The vast majority of people whom I talk to about autism and my experience of being autistic have been supportive and if anything just curious about what it’s like to be me. Thankfully, curiosity is something I can handle.
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An Autistic's guide to autism: How the subtleties within our language affect those who hear us
The ways in which we use language reflect how we think about the world. The words we use to describe someone or something are indicative of how we view that someone or something. There are different ways that we can talk about things, and those ways of speaking telegraph our explicit and implicit beliefs about those things. More specific to the topic of this column, there are different ways of talking about autism. In general, there are two different ways that people talk about autism. Most people aren’t aware of the implicit assumptions of those viewpoints, but they are there, and they have meaning.
To me this difference in viewpoint through language can best be exemplified by whether someone refers to another person as an “autistic person” or as a “person with autism.” For now, I will focus on the meaning of the latter.
Consider what we mean when we say that a person “has autism” or that they are a “person with autism.” What are some other things that we refer to in this way? Well, a person might have a chair, or a home or a desk. These are concrete objects, things to hold and possess. We also say that people “have cancer” or “have depression.” Here we refer to physical or psychological ailments, which—while more abstract than chairs and desks—are still things, related to but separate from the individual to whom we refer. It is in this category that we place autism when we say that someone “has autism.” We are saying that autism is a thing, distinct from the individual who has it.
There is another view of autism, which we reference when we say that someone is an “autistic person.” This does not use the word “autism” to refer to a thing, a noun. Our use of “autism” here is as an adjective, a describing word. Here we say that someone has the quality of being autistic, i.e. that autism is a quality, and that that quality is a part of the person we are referring to.
This may seem like a merely syntactic difference, of no importance to anyone but the grammarian. However, in my experience this distinction can mean a great deal to the person being referred to. As I have said before, when we refer to others as being “persons with autism,” we are indicating that “autism” is a thing separate from the individual. In our society, this often comes with the connotation of autism being a bad thing, in the same way that it is bad to be a person with cancer: something that someone does not want and should not want to have. It is that connotation that I am fundamentally opposed to, and it is that connotation that I believe we avoid when we refer to people as “autistic.” By referring to autism as a quality, we change our viewpoint to one in which autism is an identity, a part of who a person is rather than a thing a person has.
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An Autistic's guide to autism: How autism awareness has changed the way schools educate students
When I was four years old, I was diagnosed with Asperger’s syndrome. The diagnosis was fairly new at the time—it had only been a diagnosis under the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) for seven years at that point—so my mother and father had to bring me to a specialist in order to diagnose me. Neither of them had ever heard of autism before, let alone Asperger’s. While they were glad to have a reason as to why I didn’t behave like other children, they still didn’t understand how they could help me overcome the challenges I faced.
Even with my diagnosis, there were few resources available to parents to help them understand their autistic children. The spectrum model of autism was a recent phenomenon at this time, and of the few people who knew about autism, many still thought of it as describing a very narrow set of characteristics. Awareness for autism in general was almost non-existent, especially in a sparsely populated state like Maine. My parents had to work hard to find resources to help me.
One of their biggest hurdles was acquiring educational accommodations for me. The local elementary school I attended didn’t have a special education program to speak of. Although my Individualized Education Plan (I.E.P.) entitled me to academic accommodations, my elementary school was reluctant to provide the services I needed to succeed.
Looking back, I think I understand why the school made it difficult for me to receive accommodations. While I remember that the school’s reluctance was in part due to poor administration, I feel that the problems stemmed in large part from a lack of understanding as to why I needed what I was asking for.
For instance, when I was young, one of the things that worked best to calm me down was chewing on something. Gum wasn’t allowed at the school, and my parents didn’t want me chewing on my own clothes. Instead, I chewed on straws, which were available in plenty at the cafeteria. The number of times an administrator stopped me in the hallway to tell me to take the straw out of my mouth, and the number of times I or someone else had to then explain that I had been given permission to do so, went beyond young Benjamin’s ability to count. Small incidents like this were typical, and symptomatic of the larger issues I experienced at the school. Administrators and teachers alike didn’t understand that, while my behaviors may have been odd, they were effective ways for me to function in a school environment.
Since then, autism awareness has improved exponentially. The schools I work with now are all eager to learn more about how they can help their autistic students and many already have strong programs designed to help students on the spectrum. If today’s level of autism awareness and education was around when I was a child, I don’t feel my parents would have had nearly as much trouble getting me the accommodations I needed.
Speaking of parents, autism awareness has also resulted in more resources for parents with children on the spectrum. Public schools, universities and other non-profit organizations are providing a number of services to parents that didn’t even exist when I was a child. While the state of education for autistic children is far from perfect, it is certainly better than it was when I was four. A lot has changed in 15 years.
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An Autistic's guide to autism: My limitations as an autism advocate and columnist
Many of my autistic friends have talked to me about how they feel that others think of autism as monolithic in nature: that all autistic people are the same, or that there are only two or three kinds of autistic people. Early diagnostic criteria for autism was narrowly defined, and while the criteria for diagnoses have broadened in the past twenty or so years, the general public is still taking its time to catch up. The media does little to abate this misconception, with depictions of autism that are few and far between and often couched in the language of autism as an “epidemic.” While those who live with autistic people and those who are autistic may know differently, the uninformed and uninitiated may think the adjective autistic refers to a homogenous group.
One of my responsibilities as an autism advocate, I feel, is to dispel this myth of autism as describing a narrow range of individuals. The experiences of one autistic person can be very different from the experiences of another. The range in ability and disability within the autistic community is almost as large as the number of people in the community itself. What one person may find as their strengths, another person can find as their weaknesses and vice versa.
I recall working during my summer between high school and college with a student with whom I had such a gulf in life experience. He was nonverbal, had gross motor skill difficulties and was intellectually impaired. While he and I shared certain common experiences—we both have difficulty eating certain foods, both have difficulties with crowds and loud noises and both need structure and order in our lives to be comfortable—we also had great differences in what we had experienced, what we were capable of doing and what we were unable to do.
When I write this column, I always try to write from a first-person perspective. I am the ultimate authority on my own experiences, and so I write about who I know best: myself. However, I am also an advocate for a large and diverse community. I have been given opportunities that others have not, given resources others have not had and as a result now have a platform through which to speak my mind to a wide audience. That is a privilege I do not take lightly. So while I think it is important to speak to issues that affect all autistic people, I fear speaking to experiences I have not had. For instance, I don’t know what it’s like to be nonverbal, or to have difficulties with my gross motor functions like the student I worked with during the summer. His are experiences that many autistic people have had and continue to have, and it would be wrong of me to speak for those people and their experiences I do not share.
I began this column with the hope that I could give voice to an often voiceless community. My fear has been in addressing experiences I have never had I will take away the very voice I sought to give—That I will be a part of the problem I sought to correct. However, I think that addressing all autistic experiences is important. I do very little to expel the myth of the autistic monolith when mine is the only perspective being heard. I hope to do more to speak to autistic experiences outside of my own in the coming months and years. Unfortunately, I, like many autistic people, find change difficult. So I may need some time to adjust.
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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.
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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.
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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.
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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.
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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.
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An Autistic's guide to autism: Beyond the stigma; disability can positively forge identity
I am a disabled person. Much of my life is dictated by the fact that I am autistic, and that therefore I am unable to do certain things easily. Being autistic dictates where I go to eat every day, where and with who I spend my time, in what places I can work and study and enjoy myself. If a food is too complex I cannot eat it. If a place is too loud then I cannot be there. If a statement is too vague, then I cannot understand it. As well, that which I consider in excess is just fine for the typical person. In short, because I am autistic there are things that are much more difficult for me then they are for the majority of other people.
And yet, I consider autism to be fundamental to my identity: to my internal conception of myself. When I give a presentation about autism, or write an article about autism, or just talk about autism in casual conversation, I try to make it very clear that I do not consider autism like an ailment that I am stuck with, but as a part of who I am. So much so, that I have changed the way that I speak about myself: from “a person with autism” to “an autistic person.” I also try to make it clear that I would not want to be any other way than I am now. Despite all the difficulties I experience because I am autistic, if some procedure were developed that would stop me from being autistic then I would refuse it (and vehemently at that).
Why?
Two reasons.
The first concerns the concept of disability itself. Having a disability is often associated with bearing a burden, or with withstanding a trial. When we speak and think of disability, we are often making the implicit statement that “there is something wrong with that person, because there is something that they have difficulty with, or that they cannot do.” Or put another way, “a person with a disability is to some degree broken.” I maintain that this is false. To have a disability literally means that one is limited in one’s ability to perform certain tasks or actions. That does not mean that the person with a disability needs fixing. Human beings should never be considered broken, because they never are. Not only is that conception emotionally harmful to individuals with disabilities, who grow up to think that they are broken, but it is a misunderstanding of what it means to be disabled.
The second concerns the specific nature of autism. As autism is neurological in nature, to say that someone is autistic is to say that their brain works or is arranged in a certain way. A device that claimed to “cure” a person of their autism would have to change—in a very fundamental way—the nature of that person. To “cure” a person of their autism would be to change the way that they process and perceive the world. To “cure” a person of their autism would be to kill that person, and replace them with a new, non-autistic person, who would then take up residence in the body of the deceased. As such, I consider my difficulties, numerous as they may be, a reasonable price to pay for my continued existence.
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An Autistic's guide to autism: Deciphering sarcasm and saving my social life
Being autistic, I am not always able to tell when someone is being serious and when they are kidding around. Things like sarcasm and teasing are hard for me to identify; the contextual clues required to differentiate a light hearted joke from a serious insult are not always obvious, resulting in my often taking funny situations far too seriously.
This caused problems for me when I was in my early years of education. When a teacher was trying to be lighthearted—perhaps making a silly joke about my name in relation to the similarly named state or peppermint patty—I would take the joke too seriously, coming home in tears thinking my teacher was mocking me. By contrast, I would also take situations in jest when they were not meant to be. A fight between friends could seem to me like a lighthearted spat, and my attempt to join in on the fun would only escalate the situation, leaving two very angry friends and one very confused me.
When coming to Bowdoin, I was worried at how my inability to register serious situations might hinder me socially. I worried that I would come off on the wrong foot if I was taking things too casually or too seriously, and thus alienate the people I would be studying with for the next four years. I was especially worried about how I would interact with the people living on my floor. If I could not interact appropriately with them, then I would be left dealing with a very long—and very uncomfortable—first year.
Unfortunately for me, my dormmates turned out to be the joking type. At times I worry that the only way they can communicate with one another is to rib and tease. While for the first few weeks of my first semester, my use of the age old autistic tactic of “winging it” allowed me to differentiate between teasing and serious comments, I was still worried that the façade might come down, and I might slip up in a major way.
Fortunately for me, my new friends and I came up with a way for me to cope with their joking nature, and still allow them their fun. On one cold night, while walking back from Super Snack, I made a suggestion that would save me forever more from the embarrassment and confusion that I feared. Enter the sarcasm eagle.
The sarcasm eagle is an effective and efficient, autism-approved way of indicating when someone is not being serious. To use the sarcasm eagle, one puts one’s hands together, with the thumbs wrapped around one another, and the hands splayed out to either side, palms inward, as if miming a bird or other winged creature. Then, one flaps the “wings” of their hands and says, in a clear tone, “Ca-caw.”
The beauty of the sarcasm eagle lies in its clarity and simplicity. It is so outside the realm of typical behavior that there is no way of misinterpreting it (how many times a day do you see someone imitating a bird?). And instead of a long, drawn-out explanation as to the nature of a joke, or a justification as to the reasons for a comment, one need only flap their hands and say “Ca-caw,” and with that simple physical gesture and masterful onomatopoeic phrase, one conveys a wealth of information as to the nature of the situation.
For me, having such a simple and reliable way of reading a situation is a godsend. I know just what the tone of a situation is, without having to use my less than stellar reasoning to figure it out on my own. I am very grateful to my floormates for accommodating me in this regard.
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An Autistic's guide to autism: Dinosaurs to derivatives; autism and Special Interests
Many autistic individuals, throughout the course of their lives—though especially in childhood—have a singular passion that captivates them. This passion is more than a mere hobby, more than a mere interest, more than a pastime or diversion. This passion is the focus of captivation and affection, of time and love and energy. In autistic jargon, it is known as a Special Interest. Capital “S.” Capital “I.”
Dropping the capital letters for a moment, a special interest is some singular interest that an autistic individual focuses their attention on to an extreme degree. This interest may take the form of any topic under the sun. It might be something general, like art or music or sports. Or it might be something particular, like the royal family of Saudi Arabia or words that begin with “Q.” Regardless, a special interest is one that an autistic individual fixates on. If the interest is academic, the autistic person might learn everything they can about the topic. If the interest is of a more physical nature, the autistic person might do whatever it is that interests them all the time, perhaps for hours every day. The special interest often (but not always) takes away time from other interests, and the autistic person’s worldview and experiences are often based around their special interest.
For a group of individuals constantly overwhelmed by their surroundings, having a special interest serves as a grounding point for autistic people. When navigating the strata of society, or wending their way through school or work or home environments, an autistic person may depend on their special interest as a constant. As something that makes sense.
When I was younger, my special interest was dinosaurs. I loved dinosaurs. I loved dinosaurs a lot. I learned about dinosaurs whenever and however I could. I memorized their scientific names, and words associated with them, and the men and women who discovered them. It was difficult at the time for me to talk about anything but dinosaurs. This also came at a time in my life when social interaction was very difficult for me. I had very few friends and was often in trouble at school due to misunderstandings or lack of communication with classmates. I cried often and was overwhelmed even more, as the world was a confusing place that I did not feel I fit into. But dinosaurs made sense. A carnivore was a carnivore, a triceratops was a triceratops—those words did not change their meanings depending on circumstance. They remained constantly (and comfortingly) solid and understandable, even when things happening around me weren’t.
At the time I did not view my special interest as a refuge, and in a way I still don’t. My special interest right now is mathematics, and while I am not as singularly focused on math as I once was on dinosaurs, I still find myself spending hours of my time working on math, just because I love to learn about it. While I do not use math as an escape from anything, it is comforting that math, like dinosaurs, doesn’t change very quickly. Both are too old for that.
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An Autistic's guide to autism: The challenges of autistic dining
Food is important. It sustains us, nourishes us, and provides us an opportunity to bond with our fellows during its consumption. Eating is used as a pleasure activity, a social activity, or just something to pass the time. Everyone does it. But for the autistic, eating can be a challenge. Many autistic people I know—myself included—have very limited palates, which are irregular in their patterns and nonsensical in their choices. Many a friend has been confused by the variety of foods that I can and cannot eat, and almost incensed by the seemingly random nature of those foods. Why can I eat pizza but not cheeseburgers? Why can I eat pears but not lettuce? Why is it that I can eat plain pasta, but as soon as a sauce enters the mix I’m out? And why, why for the love of God, do I not like chocolate? While there is a method to the madness, some explanation is required to get us there.
The fundamental difference between an autistic brain and a neurotypical brain is that an autistic brain experiences more of the world than does a neurotypical brain. Sensory experiences are more intense, with more information being processed and every bit of that information carrying more weight. Taste is a sense, comprising not only the physical components of texture and aspects of taste, but also the olfactory component that translates smells into parts of taste as well. It is in these combinations of smell, taste and texture that many derive enjoyment. Chefs are praised on their ability to mix textures, on being able to add subtle hints of flavor to a dish, or to meld seamlessly many ingredients into a cohesive whole. While this may seem enjoyable to many, to me—and to many autistic individuals—all of that just seems like too much.
When your sensory experience of the world is intense, complexity is not your friend. For me, when a food is too complex or too intense—when, for instance, spices are used in the dish, or when many ingredients are mixed together—I cannot eat it. Now, this should not be confused with disliking a food. There are many foods that I do not eat simply because I do not like them. Lobster is one of them. If pressed, I could consume a lobster to survive, with only a mild amount of griping. With other foods—like salads, or sandwiches, or the more complicated dishes that are served during special events—the sensory experience is far too intense, and I cannot eat them. To attempt to do so would be physically painful to me. To illustrate what I mean, take an example from my childhood.
When I was eight, my mother and I went to an old restaurant and shopping center called Grand City (whose structural carcass is now occupied by a Cool as a Moose). When we ordered our lunch, I ordered chicken fingers and fries, and she a sandwich and salad. Her salad came first, and while we waited for the rest of our food, she tried to get me to try some of her salad. Then, as now, I did not like vegetables. For me they are either too textured or too strong tasting, but she assured me that, by putting dressing on one of the cucumbers, I would like it. I did not. As soon as that dressing soaked cucumber entered my mouth, it came right back out again, and into my mother’s water glass. She was not pleased.
Now, did I want to spit the dressing-laden contents of my mouth into my mother’s water glass? No. But the pungent odor of the dressing, the crunch of the cucumber’s flesh and the slimy texture of the seeds, were all together so intense that I felt I was going to throw up (and even now, ten years later, I cannot think of that story without feeling a little queasy). Such is my experience with many foods. Any food with an intense taste, or multiple textures, or a combination of the two, is going nowhere near my mouth.
At times this makes my life a bit difficult. During my pre-O trip, I had to survive mainly on apples and tortilla shells, and during orientation proper, when fine dining was the name of the game and everyone around me was expounding the quality of the food, I had to subsist on rolls and pears. After applying for accommodations, my food situation has much improved, as the dining staff now knows that for me bland is better, but eating can still be a challenge sometimes. That is okay, though. I do not mind bland foods, because to me they are just intense enough, so my dietary needs are often less expensive (both in terms of calories and dollars) than for most. As one of my autistic friends likes to say, “he is richest whose pleasures are cheapest.”
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An Autistic's guide to autism: You don’t look like you have autism—the unintended impact of words
“You don’t look like you have autism.”
“You don’t sound like you have autism.”
“I wouldn’t know you had autism if you didn’t tell me.”
People have told me things like this many times over the years. As someone well adjusted to his autism, my behavior does not often match the autistic stereotype. Others often comment on this fact. While I know that people mean well, their words carry implications that can be hurtful.
When someone says that I “don’t look like I have autism,” I like to think that they are implying that I seem unperturbed by the difficulties faced by other autistic individuals. I do not noticeably rock in my seat, I do not reflexively vocalize at high volume and I do not flap my arms or find great difficulty in communicating with my peers. In other words, I appear “normal” to them—whatever that word may mean. It is true that I have learned to adapt to being autistic over the years: learning coping strategies that help me navigate social situations and other situations that I might otherwise find overwhelming, but saying something like “you don’t seem autistic” ignores a very real fact about me—I am autistic.
In my daily life, I maintain a constant stream of consciousness, tasked with keeping me adapted to the world around me. In order to maintain an air of ease in social situations, I practice conversations and “what if” scenarios in my head—sometimes a dozen at a time—just in case those situations might arise. I go to the dining halls as they open, so as not to be overwhelmed by the roar of a crowd I am certain to find at 9 a.m. or 6 p.m. The degree to which I make contact with others, the places I frequent and the people I spend my time with, even the music I listen to and the foods that I eat, are dictated by the fact that I am autistic. Most of the time, this is not an issue: not because it has never been an issue, but because I have adapted to being a certain way in a society designed for people who are different from me.
When people tell me that they would not know I was autistic if I had not told them, what I’d like to think they are commenting on is my success at adjusting to society.
What they are actually often trying to say is “you don’t seem to have anything wrong with you.” I resent that. There is not anything wrong with being autistic. Being autistic can be difficult, yes, but that does not equate to being defective. While I understand that people are trying to be kind when they separate me from my autism—and I appreciate the attempt—their implication is a little hurtful. I wish others would, as I have said often (and in jest) when presenting on the topic: “watch your language.”
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An Autistic's guide to autism: Linking vaccines to autism is harmful to autistic children
Vaccines don’t cause autism.
In an ideal world, this article would stop with that sentence. Those words would be only an obvious reminder of a fact long accepted into the collective consciousness of civilization. This is not, however, an ideal world, and there are still those who believe there is a link between vaccination and autism. To these individuals, I could show the numerous studies and trials—involving millions of children from around the world—that show no correlation between vaccinations and autism. However, these individuals cannot and will not listen to logical arguments: arguments of reason, rationality or science. In a way, this makes sense.
Many who espouse the connection between vaccines and autism are parents. Mothers and fathers whose children are autistic, or who know parents whose children are autistic. To them this connection provides an explanation for why their children are different from the children they expected, or a reason why they as parents are protecting their children more than other parents. This thinking is misguided.
As an autistic person, when I hear the phrase “vaccines cause autism” I do not just hear a scientifically inaccurate statement. What I hear is the gravest insult I could ever receive. The diseases that vaccines protect from—measles, small pox, flu—are deadly. They kill people. Entire communities have been wiped out because of these diseases. When I hear someone say that they will not vaccinate their children because it might give them autism, what I hear is that what I am, who I am, the very essence of my being and identity, is worse than death itself. I hear that they would rather have a dead child over an autistic child. I hear that I am broken.
As a child this was harmful for me. I took from this that I was mistake: something that should not exist. This is a not something a child should think of themselves. When you walk into a restaurant, hungry and just wanting a meal, and find that you can’t eat anything on the menu because it is all too over stimulating; when every time someone grabs your shoulder—to congratulate you or comfort you—you tense and shriek and rock because even that touch is far too intense; when you realize in the dead of night that you do not know the color of your mother or fathers’ eyes because you have never made eye contact with them; when you feel isolated and alone and powerless because you are incapable of interacting with those you love in the way they so easily interact with one another, you do not need society telling you that you are broken. You need love and support and caring, a community with whom you can feel understood.
I do not fight for the truth that vaccines do not cause autism merely for the purpose of scientific literacy. I fight because I do not want children feeling about themselves the way I felt about myself. No child deserves that.
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An Autistic's guide to autism: Most people don’t like math: the flaws in modern math education
Most people don’t like math. While this may not be so true of the Bowdoin populace (the population of Searles at any given time should attest to the inaccuracy of “most” in the case of Bowdoin), it is certainly true of the general public. There is a stigma that surrounds mathematics, a perception of math as an esoteric subject only the odd enjoy. Some might have found high school geometry pleasing, others may have enjoyed algebra, and some may say that they at least found calculus interesting, if not enjoyable. However, the vast majority of students can attest to having found at least one math class insufferable. “I hate math” is not an uncommon phrase in a math class.
Why is this? What part of mathematics is so intolerable that it can evoke such wrath, from children and adults alike?
I believe the flaw lies not with mathematics itself, but in the way it is presented.
Take as juxtaposition an art class: art assignments might range from painting a picture, to sketching an object, molding clay or capturing a photograph. These tasks are often simple, for the purposes of teaching, just as in math class one starts with the basics: addition, subtraction, multiplication and division. Unlike in mathematics, there is an unspoken, almost unthought-of assumption and understanding that runs through any art class: that there is more beyond this. An artist practices his or her art so that he or she may move on to do better art, knowing full well that others have done this in the past. There is a cultural knowledge of art that, while not deep, is widespread. A child in their third grade art class is aware that art isn’t just making macaroni sculptures and drawing crayon flowers. They have heard of figures like Van Gogh and Picasso, perhaps not specifically of their accomplishments, but at least that they are artists and that they are important.
The same cannot be said for mathematics. Even a well educated individual may be under the impression that math stops at calculus, and even those interested in math— labeled as being gifted in the subject —may be under the impression that professional mathematics is like a competition, where mathematicians pose each other problems to solve, and whoever does so quickest wins. In reality, mathematics is a subject-spanning body of knowledge built up from logic to reveal truths about itself and the world. Modern mathematics comprises an enormous body of work, done by hundreds of thousands of men and women over the course of millennia, and stretching in scope from the simplest properties of numbers and shapes, to the truly abstract objects by which no real world object could ever hope to be modeled.
Modern math education teaches mathematics as a cut-and-dry way of finding answers to problems that ,to most students, didn’t need answering anyway. If instead, time was spent introducing children to the great accomplishments of mathematics: from simple to state problems like Fermat’s Last Theorem, to theorems which place limits on our ability to find definitive answers, like Gödel’s incompleteness theorems, to the problems which have yet to be solved, like the Riemann Hypothesis, then they may not have as much reason to hate the subject. If children knew the stories of great mathematicians like Euler, Gauss, Cantor and Galois, perhaps they might realize that there was more to math than saw in the classroom. Perhaps, their curiosity would be sparked, and one day they would go on to solve the great problems they had learned about. Pleasing ‘if’s indeed, but it is difficult to be curious about a world you do not know exists.
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An Autistic's guide to autism: When your heroes aren't human
It is a common trope in science fiction to make alien or robotic characters unable to understand or use the nuances of verbal communication. Often portrayed as either emotionless or infrequent in their emotional displays, they stumble through social interaction, misunderstanding the use of sarcasm and humor constantly. At times they provide comic relief: the perfect companion straight man-woman-alien-robot-thing to any character. At other times they are moral centers, certain and unfettered by emotion in their beliefs of right and wrong and of the common good. Spock and Data, the Vulcan and android of Star Trek fame, immediately come to mind as prime examples of such characters.
As a child, I loved them. Their logical thinking and scientific minds helped to inspire my own love of the sciences, and their unwavering certainty in doing what was right—no matter the personal cost—inspired the strict morality that I still adhere to. They were my role models, my heroes, and not just because I thought their uniforms were super cool.
As a young autistic child, these characters were also often the only people I could relate to. Like many autistic individuals—and like my idols—I had difficulty understanding and making sense of the nuances of social interaction. What was and was not appropriate to say and do in different social situations was challenging, and often impossible, for me to grasp. Sarcasm and innuendo were my nemeses, my ability to communicate limited to the most literal of speech. During a time in my life when the world around me was confusing, these paragons of reason were people I could understand. But, like any other form of hero worship, this conception had consequences.
Characters like Spock and Data are portrayed the way they are because they are based on a fundamental assumption throughout science fiction, an unspoken truth that permeates our society and our concept of ourselves: that to be emotionless is to be inhuman, alien, other. As an autistic person, I do not experience emotion in the same way other people do, and so to others I can seem at times emotionless. So when looking on these inhuman characters, who were more like me than my parents or teachers or friends, I too felt inhuman.
When aliens and robots are more like you than your family is, you start to question some things. In my childlike innocence, I did just that. Why is my family so different from me? Why am I so different from everyone I know? Do I really belong? Am I even human?
I would continue to doubt myself well into adolescence, and it would not be until years later that I put my questions to rest, and accepted that even though I was different, that did not mean I did not belong.
A big part of this acceptance came from meeting other autistic people. Many autistic people say that growing up, they felt as though they were from a different world, and had been born on the “wrong planet.” However, knowing that we are not alone in our experiences of the world has led an entire community of autistic people to spring up, both online and in real life. This sense of belonging was something that I experienced far too late, and so I try to share it with as many young autistic children as I can. What I now wish I had had, in retrospect, was a role model who was also autistic. Not a character that was like someone with autism, but someone that was openly autistic, who lived the life of an autistic person, who struggled with the same things I struggled with, but who could overcome their difficulties. While I still love my childhood android and Vulcan (I cried when Leonard Nimoy passed away) and still enjoy our similarities, I try to remember that they are characters written to convey a story, and not real people living their lives one day at a time.
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An Autistic's guide to autism: When your heroes aren't human
It is a common trope in science fiction to make alien or robotic characters unable to understand or use the nuances of verbal communication. Often portrayed as either emotionless or infrequent in their emotional displays, they stumble through social interaction, misunderstanding the use of sarcasm and humor constantly. At times they provide comic relief: the perfect companion straight man-woman-alien-robot-thing to any character. At other times they are moral centers, certain and unfettered by emotion in their beliefs of right and wrong and of the common good. Spock and Data, the Vulcan and android of Star Trek fame, immediately come to mind as prime examples of such characters.
As a child, I loved them. Their logical thinking and scientific minds helped to inspire my own love of the sciences, and their unwavering certainty in doing what was right – no matter the personal cost – inspired the strict morality that I still adhere to. They were my role models, my heroes, and not just because I thought their uniforms were super cool.
As a young autistic child, these characters were also often the only people I could relate to. Like many autistic individuals – and like my idols – I had difficulty understanding and making sense of the nuances of social interaction. What was and was not appropriate to say and do in different social situations was challenging, and often impossible, for me to grasp. Sarcasm and innuendo were my nemeses, my ability to communicate limited to the most literal of speech. During a time in my life when the world around me was confusing, these paragons of reason were people I could understand. But, like any other form of hero worship, this conception had consequences.
Characters like Spock and Data are portrayed the way they are because they are based on a fundamental assumption throughout science fiction, an unspoken truth that permeates our society and our concept of ourselves: that to be emotionless is to be inhuman, alien, other. As an autistic person, I do not experience emotion in the same way other people do, and so to others I can seem at times emotionless. So when looking on these inhuman characters, who were more like me than my parents or teachers or friends, I too felt inhuman.
When aliens and robots are more like you than your family is, you start to question some things. In my childlike innocence, I did just that. Why is my family so different from me? Why am I so different from everyone I know? Do I really belong? Am I even human?
I would continue to doubt myself well into adolescence, and it would not be until years later that I put my questions to rest, and accepted that even though I was different, that did not mean I did not belong.
A big part of this acceptance came from meeting other autistic people. Many autistic people say that growing up, they felt as though they were from a different world, and had been born on the “wrong planet.” However, knowing that we are not alone in our experiences of the world has led an entire community of autistic people to spring up, both online and in real life. This sense of belonging was something that I experienced far too late, and so I try to share it with as many young autistic children as I can. What I now wish I had had, in retrospect, was a role model who was also autistic. Not a character that was like someone with autism, but someone that was openly autistic, who lived the life of an autistic person, who struggled with the same things I struggled with, but who could overcome their difficulties. While I still love my childhood android and Vulcan (I cried when Leonard Nimoy passed away) and still enjoy our similarities, I try to remember that they are characters written to convey a story, and not real people living their lives one day at a time.
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An Autistic's guide to autism: An alternative perspective on autism
To many, autism is just a vague idea—one of a thousand disorders which affect “someone else’s child.” To many others, autism is the niece or nephew who can put together puzzles blindfolded or who knows the name of every rocket ever built; the neighbor’s kid who won’t look you in the eye and who never speaks to anyone; the schoolmate with no sense of fashion who sits in the back of history class and who never uses their “inside voice.” To still others, autism is a hushed conversation late at night, when the house is quiet and the sun long gone: “Have we failed as parents?” “Is it because we vaccinated him?” “Is it because we didn’t hold her enough as a baby?” “What did we do wrong?”
To a select few, autism is an epidemic; a plague that has swept through the children of the nation and whose cure must be sought out with all due speed before yet another family is tainted with that disease which turns happy, cooing babies into noiseless alien creatures. That disorder which robs children of the ability to make friends, to show affection, to form meaningful connections of any kind. That thing which burdens parents the world over.
These people do not know what autism is.
When I was four-years old, I was diagnosed with Asperger’s syndrome, a disorder on the autism spectrum. Though the diagnosis is now defunct, it would define my life for years to come. Growing up, I found it difficult to make friends. Often I was told I was rude or annoying when my failure to recognize social cues. I was also often overwhelmed by the touch of others, and when my hands and arms proved a more effective deterrent from unwanted touch than did my words, I became the child no mother wanted her child to associate with, for fear that my bad influence would rub off on them. I wore my diagnosis on my shoulder, the only explanation I had as to why I was different from other people. To me, autism was the part of me that made my life difficult, that made others dislike and even hate me. The part of me that made me feel that they were right to.
I did not know what autism is.
But now I do.
From a scientific perspective, autism is simply a description for a particular kind of brain. An autistic brain has high levels of what is called synaptic connectivity; an abundance of biological wires and circuits that make life for autistic people a more intense experience than for those without autism. Each stimulus abounds with information for the brain to process, each touch is like fire, each sound a cacophony, each taste an onslaught. With time, the brain begins to adapt to this overabundance of stimulus, but this adaptation produces an individual who views the world in a unique way.
Many of what are known as the “symptoms” of autism are in actuality characteristics of the autistic brain that do not meet societal expectations. Even very young children are expected to exhibit some form of social ability, to attempt or reciprocate communication on some basic level. However, when the brain is expending all of its energy on processing a mountain of sensory information, it has little time for mole hills such as social interaction. Thus, autistic children grow and develop in a different way from neurotypical children. This is not a bad thing. Viewing and experiencing the world in a unique way is not a sign of disability. Yes, some aspects of society are difficult for the autistic individual. I prefer the quiet of a corner of the dining hall rather than a space in the open, surrounded by noise. I enjoy watching a movie with friends, rather than going out for the night—the first time someone sees me at a College House party will be the day Hell freezes over.
However, my preferences and quirks are not the sign of disability or disorder. There is nothing wrong with the way my brain works, nothing wrong with the brain that so many millions were born with. Those brains are just different. Those people are different. And different is not bad.
So what is autism?
Autism is an experience.