How autism awareness has changed the way schools educate students

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.

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.

An Autistic's guide to autism

How autism awareness has changed the way schools educate students

This piece represents the opinion of the author:

Ben York

Columnist

January 27, 2017

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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