You don’t look like you have autism—the unintended impact of words

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.

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.”

An Autistic's guide to autism

You don’t look like you have autism—the unintended impact of words

This piece represents the opinion of the author:

Ben York

Columnist

January 29, 2016

“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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