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.