In January of 2017, I participated in an abroad J-term course called “English Theatre: Mirror of Society and the Human Condition.” We traveled to England and attended plays nearly every night, discussed them, journaled about them, and partook in workshops with actors in order to understand the material better. Toward the end of the trip, we saw a play called “The Curious Incident of the Dog in the Night-Time,” based on the 2003 book of the same title. The protagonist of “The Curious Incident,” Christopher, is on the autism spectrum. Though the work has been criticized in the autistic community for making Christopher less typically autistic and more stereotypically autistic, he was nevertheless unmistakably on the spectrum for anyone with a passing familiarity with autism symptoms. Which is why I was floored, discussing the play the morning after having seen it, to find that my classmates thought it had not been at all clear that, for instance, the police officer who encountered Christopher early in the play should not have laid hands on him. Not touching a person with autism unless you have their express consent is just common sense, I thought!
Although none of my close family members have been diagnosed with autism, I grew up familiar with the spectrum thanks to my school. I attended a “gifted and talented” elementary school that was test-in, and it was full of kids categorized as “twice exceptional”—both gifted and disabled. I knew plenty of kids with autism growing up, one of whom became my first boyfriend when we reached high school. Autism was something teachers at my elementary school talked to their classes about. I learned my way around autism both at school and in my first relationship. This was normal to me.
But that discussion of “The Curious Incident” taught me that my upbringing and my knowledge were unusual. Yet it has only been as I have gone through my own journey with autism evaluation, diagnosis, and disclosure that I have realized just how unusual familiarity with autism really is. When I was considering being evaluated for an autism diagnosis, I brought it up with my therapist, and her response was basically, “I don’t think you’re autistic because you’re not obsessed with trains.” While this may sound funny, it’s part of a much larger and more insidious problem of not diagnosing girls on the spectrum because we often have different symptoms than boys do, and the way autism presents in boys is considered the “standard” presentation. The fact that I remained undiagnosed until a month after my 22nd birthday, and a week after my graduation from Luther, is a testament to how few people in a position to pay close attention to me knew anything about autism.
This widespread lack of knowledge is why I am now intent on educating the people in my networks about autism. Anyone who plans on becoming a parent may someday come face-to-face with autism if it turns out their child is on the spectrum. Teachers, health care professionals, and law enforcement officers are all but guaranteed to encounter people on the spectrum in the course of their careers. Yet my J-term cohort full of nursing majors was baffled by “The Curious Incident.” We need to do more to educate people about autism, or else we’re going to continue to unintentionally damage our children, friends, relatives, students, patients, and clients on the spectrum.
So here’s what I want you to know about people with autism. First of all, we’re people. We have emotions, experience pain, and excel in certain areas—not always math, either. I say this because there’s a stereotype that autistic individuals are especially unemotional, stoic, and only good at “heartless” disciplines, or good at nothing at all. This stereotype bleeds over into health care; children with autism are half as likely as other children to be given an anesthetic during a blood draw, despite having the same changes in heart rate that indicate pain and distress.
Secondly, we communicate differently than other people, both in how we put information into the world and in how we receive it. We’re more likely to be blunt and to say what we mean rather than using euphemisms or sarcasm. We often don’t understand euphemisms, metaphors, sarcasm, or jokes. Many of us don’t communicate with our facial expressions or vocal inflection, and we may not understand what other people are trying to communicate through those methods, either. Some of us have slow processing speeds, meaning we need time to digest and decode what we’ve heard or read before we can respond. Some of us are nonverbal; others of us become nonverbal in stressful situations. Some nonverbal people can write or type in order to convey messages, and there are apps that talk for people when they find themselves unable to talk. Other nonverbal people communicate solely through gestures and sounds.
We tend to like repetition and sameness and dislike change. One manifestation of this is that we tend to have a “special interest”—a topic about which we are extremely knowledgeable because of having spent lots of time immersed in it, often to the exclusion of immersing ourselves in anything else. Sometimes people’s special interests are valued by society, and these people become experts in their fields; other people’s special interests are dismissed as frivolous or weird. For people on the spectrum, having only one hobby tends not to be boring but instead to be fun, soothing, and life-giving all at once.
Another manifestation of the way change is difficult for people with autism is the frequency with which people on the autism spectrum develop PTSD, even from stressors as common as losing a pet. The flip side of this is that routine and sameness are very calming for people on the spectrum. We often eat the same foods every day and continue to wear the same clothes year after year because this is how we stay calm. Variety is not the spice of life for us; it is a threat and sameness is protection.
Sensory processing is another area where those of us on the spectrum differ from the rest of the population. While the stereotype is that people on the spectrum need or desire less sensory input than other people (think “sensory friendly” or “autism friendly” movie showings where the sound is turned down and the lights are dimmed rather than off), the truth is that those of us on the spectrum want different amounts of sensory input than other people, and that can go in either direction. Some of us on the spectrum may find loud noises overwhelming but crave intense physical sensation; others may need noise in order to feel comfortable but hate being touched.
Sensory input meets routines in behavior called “stimming,” short for “self-stimulation.” Stimming is an attempt to provide ourselves sensory input that otherwise isn’t being provided, usually in a way that is repetitive and therefore soothing. I play with my hair, running individual strands between the pads of my fingers to feel the texture—to stimulate my sense of touch. I also frequently stand on one leg to stimulate my sense of balance. Other people on the spectrum may make noises, rock back and forth, or flap their arms to get more sensory input of the kind they desire.
Another, more controversial symptom of autism is a lack of theory of mind. Theory of mind is the understanding that other people’s brains work differently than yours—that other people have different thoughts, priorities, mental capabilities, and even value systems than you do. Some autism self-advocates argue that no one actually has theory of mind, and that non-autistic people are just as likely to assume that other people’s brains work the way theirs do as autistic people are. The difference, these self-advocates argue, is that, for non-autistic people, the assumption that other people’s brains resemble theirs is a usually good one; for those of us on the spectrum, it’s usually a bad one. The capabilities of non-autistic people are beyond both my knowledge and the scope of this blog post, but it is certainly my experience that I struggle to remember and comprehend that other people’s thoughts, priorities, capabilities, and values differ from my own. Often I don’t tell people things because I assume they already know, only to find out later that this assumption was wrong.
Autism also tends to come with what are called splinter skills. Those of us on the spectrum tend to have more pronounced mental strengths and weaknesses than the rest of the population. I’m extremely good at punctuation and grammar—I’ve been correcting adults (correctly) since I was eight—but I’m unusually terrible at directions and live and die by my GPS. Other people are great at advanced math but can’t budget at all.
Another common set of symptoms that come with autism falls under the category of trouble with executive function. Executive function has to do with planning, strategizing, focusing, and impulse control—basically everything necessary for excelling in school or at work other than intelligence. Struggles with executive function can make it hard for many people on the spectrum to do well in school or at work, even when they’re very intelligent.
People on the autism spectrum also tend to have high rates of co-occurring mental health issues, especially depression, anxiety, and eating disorders. At the same time, many people on the spectrum, especially girls and women, are misdiagnosed with mental health conditions they don’t have because providers don’t realize that the symptoms they’re observing are actually symptoms of autism.
Despite growing up familiar with autism, I knew far less than half of this information before I heard a presentation on autism at my church a little over a year ago. Learning all of this has been a journey of self-discovery, and I mourn the better choices, attitudes, and supports I could have had if I had been diagnosed sooner. So go forth, and be better parents, aunts, uncles, teachers, health care professionals, law enforcement officers, friends, and relatives than you otherwise would have been. Remember that people on the spectrum are people too, and that their differences are not their choice and are also not deficits, but rather differences that people on both sides of the divide need to navigate.
Linnea Peterson, Luther class of 2018, is a member of Lutheran Volunteer Corps and is serving as Communications Manager for a Minneapolis nonprofit called MicroGrants.