Navigating a world where some people just don't seem to get autism

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

Navigating a world where some people just don't seem to get autism

This piece represents the opinion of the author:

February 24, 2017

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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