My limitations as an autism advocate and columnist

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: 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.

An Autistic's guide to autism

My limitations as an autism advocate and columnist

This piece represents the opinion of the author:

Ben York

Columnist

December 2, 2016

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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