The Spectrum
"Geo Tangle Rose" by James Tipton
When we were kids, my sisters and I spent many hours by ourselves at home. At the time, our father worked two jobs and our mother’s job was nearly an hour away. We fought over what to watch on the TV that was supposed to be off. Night Court was the only one we all agreed on. We fought over whose turn it was to get up and change the channel, and then later over who held the remote. We fought over who got to have what role when we played Barbies. Would I get to be the cool Barbie or the rich Barbie? Mostly I stuck with being the nice Barbie. It seemed safe.
Sometimes when we fought, I would get so angry it hurt the inside of my body. This feeling led to meltdowns that I can only remember now in a fog. I was outside my body. I screamed. I cried. I yelled. Once I went and sat in the snow without my coat, waiting to freeze to death so my sister would feel bad for being mean. Another time, I sat at the end of our driveway, which was in the middle of the woods, waiting for someone to kidnap me, again, so my sister would feel badly once I was gone. Even though we all fought, I was the only one who melted down like this. I couldn’t stand the feeling of the anger between us. The noise, the inability to know what to do. My body felt inhospitable, like a furnace or a vice.
This still happens sometimes, but the feeling has retreated. It’s further inside me.
According to the internet, I likely have autism. But internet surveys are notoriously suspect. My son actually does have autism. He was diagnosed with it when he was five. His was an easy case to diagnose. By the time it was made official on school letterhead and signed by all the people present in the room at the first of many IEP meetings, many people had hinted at it or outright said it. He had the classic signs: struggles with eye contact, struggles with answering questions and making decisions, repetitive movements, repetitive play.
At the time, I made it my goal to learn about autism, to understand him, to support him, and to be there for him. Most importantly, I wanted him to learn to be proud of himself, for who he is, because I suspected the world would not give this to him. What I wasn’t thinking about then was me.
In spite of all of my research, I’ve only recently learned about masking: the way people with autism learn to act as if they don’t have autism in order to better fit in. I’ve learned that women tend to do this more than men, and that it causes stress and anxiety. I wonder if this is actually the cause of my particular stresses and anxieties. We all have our fair share of them and no shortage of root causes for these. I could name at least ten things that cause me stress and anxiety on a daily basis.
According to The Autism Service, a UK clinic, “masking is essentially not being ‘yourself’ to fit in with society. It can involve many things, such as suppressing intense interests, stimming, copying non-verbal behaviors and developing social mechanisms to fit into various social situations.” I do many of these things. Rarely do I feel I am at ease, just being myself in social situations. Often, I am working to prevent myself from doing things I shouldn’t: reminding myself not to talk too much about one thing or to get too lost in an idea that no one else is interested in. I never have figured out how long to look at someone when I’m talking to them and when I should look away.
Ever since a close friend off-handedly told me that she has always suspected I’m on the spectrum, I’ve been considering whether I should be evaluated for it. Outside of a neuropsychological evaluation being prohibitively expensive, I wonder if it’s worthwhile or meaningful to know the answer to this question. On social media there are plenty of people who suspect they have autism, who describe themselves as autistic, and who then speak for the autism community, who do not have a diagnosis. Could I be so bold? Would I want to be?
Except a diagnosis requires a certain level of severity. The disability or disorder has to significantly affect the person’s life. I wonder if I struggle enough to warrant it. Then I wonder if I’m just really comfortable masking. Then I think maybe everyone feels as uncomfortable in their skins as I do. Then I think maybe not. Then I’m stuck and I do nothing. Move neither forward nor backward. I stay where I am. Where I have always been.
I am a person, after all, which means I am a unique, complex mix of ideas, emotions, fears, and experiences. Would giving myself a name or a category change anything?
The first phone call I got from my son's preschool teacher was because he pushed another kid. Apparently no provocation. That other kid just got too close. Several similar phone calls later and the teacher suggested we bring him to an occupational therapist who could help him with some of his sensory processing issues. At that time, I didn’t see these sensory processing issues as issues. I knew we couldn’t go out in the evening with him. We couldn’t take him to crowded places. We couldn’t change his daily routine. But that was just my child. It was just what this particular kid needed.
Dutifully, I took him to the OT. After the very first session, the therapist took me aside. “I think you need to do further testing. I want you to know when they do further testing, he’s probably going to be diagnosed with autism. I think it’s really important you know now and don’t have to wait.” I’m still grateful for Megan’s willingness to be honest with me. This was what his preschool teacher was getting at, she just didn’t want to say it.
When I told my son’s father, he told me he wasn’t surprised. “Remember?” he said. “I brought this up years ago.” His first hint was the smoke detector. When our son was two, I accidentally set off the smoke detector while I was cooking. He was so startled that he screamed and screamed until I was able to get a chair and turn it off. For the next two years my son repeatedly played “smoke detector.” He would push a chair up to us and implore us to take a mason jar lid and tape it to the ceiling with blue painter’s tape, until the hallway ceiling was littered with faux smoke detectors: ones he had made and could easily monitor.
There were also lines of toys. One of his favorite toddler activities was taking all of his toys and lining them up along the edge of the rug. This is the kind of shorthand for autism that they use on TV. I had thought his play was cute and was glad he was occupied. I was surprised how invisible it all was to me. It only dawned on me slowly how little I knew about autism. I’m ashamed to say it lived in my mind then in the way it does in many people’s minds, as a deficiency: a major difference that would render my child separate from the rest of the world. It didn’t take me long to learn about neurodiversity, but even then, it lived in me almost as a justification for his differences. A feedback sandwich, if you will: something nice to counteract the bad. Even as I tried to show him that his struggles were also strengths, I could feel that he wasn’t convinced. He knows that he struggles with things no one else struggles with. The obvious conclusion, to him, is that he’s faulty. It destroys me to watch this. I’m helpless. And it reminds me of how I felt about myself when I was young, still do.
I no longer believe the first part: autism isn’t a deficiency. Truly. It took me time, but I see his brain now for the actual gifts he possesses, not just the obvious ones like being amazing at math. I don’t even think the word disabled fits because his way of being is just one way of being. But I don’t get to create the world. The second part, that being different would set him apart, proved to be more true than I would have guessed when he was a little kid. It’s not my son’s brain that sets him apart though, it’s the world’s discomfort with him and his differences.
He isn’t disruptive or difficult. He doesn’t have meltdowns at school, even though people are sometimes mean to him or roll their eyes when assigned to sit next to him. He’s actually a very kind, very accommodating kid. But he is a kid who moves constantly, who makes unusual facial expressions, and who touches his desk in a repetitive way that has no apparent outward meaning. He has trouble getting a conversation started or keeping it going. These traits are enough to establish him as an outsider in the world of middle schoolers, someone who lives outside of real friendship. It would seem there is no kid willing to bridge that gap and no adult willing to insist that another kid tries.
Even someone who would speak up for the rights of people with disabilities, doesn’t necessarily know how to include such a person in their daily lives. Language about inclusion is so often theoretical. It’s a nice idea. The reality is that there is a world for people who have disabilities like this and a world for people who do not. Outside the compulsion of a public school classroom, these worlds rarely interact.
Unlike my son, I had friends in middle school. This in and of itself is one of the main reasons I question the validity of me pursuing a diagnosis. Did I suffer enough? If you had asked me at the time and if I had given you an honest answer, which I am certain I would not have, I might have told you how I felt I was betraying myself in order to have these friends. Again, I stop myself. Doesn’t everyone feel this way in middle school?
Throughout middle and high school I felt I was acting in order to fit in. It was hard work and as soon as I had access to drugs and alcohol, I opted for that. It made it all much easier to handle. On top of these “normal” adolescent feelings of estrangement, I’m gay. What lesbian didn’t pretend to be someone she wasn’t in the 90s in rural America? I would have had to be superhuman to feel comfortable with myself in that setting. However, these things do not necessarily make me unique. Did I line my toys up along the rug? I don’t know. If I had, someone might have found it cute and unremarkable.
My mother also was not surprised about my son’s autism diagnosis. She had noticed the way he got stuck on a topic, his literal way of thinking, the way he never looked her in the eyes. It seemed everyone I told was not surprised. But I was. I spent every day with my son, almost every waking hour, and I didn’t find him difficult to understand. I didn’t find any of his behavior odd. His world made sense to me and the two of us occupied it contentedly.
A diagnosis of autism, like with most diseases or disabilities, requires numbers: people need to show deficits in three areas of socialization: day to day social interactions, reading and transmitting body language, and developing long-term relationships. Additionally they must show at least two types of repetitive behaviors. I have lots of small repetitive behaviors, like rubbing one finger along the edge of a finger nail on the other hand. I’m almost always moving some part of me, but I do it quietly so no one has to notice. Again, doesn’t everyone?
I look up and away when it’s my turn to talk to a group. I try not to, but it’s really difficult. If I don’t look over their heads, I have to pick someone to look at, otherwise I don't know where to look and I forget what I’m trying to say. When I’m talking with a person one on one, I have to think about how much I am looking them in the eye. Often, I pick an eye to look at. Then I track how long I’ve been looking at that eye so I can know when it’s roughly time to look away. I love to talk on a walk, because I don’t have to worry about either of these things.
At the same time, I get body language. Even if I can’t always tell exactly what it means, I recognize it. I’ve had healthy long-term relationships. But so has my son.
A colleague recently recommended the book The Curious Incident of the Dog in the Night-time as a reader for my eighth grade English class. I’d heard of this book and knew vaguely that it had to do with autism but that it wasn’t written by someone with autism.
I decided to research the book before making the commitment to read it. The internet turned up many positive reviews of both the book and the play. In the synopsis on the Goodreads page, the main character, Christopher, is described: “He relates well to animals but has no understanding of human emotions. He cannot stand to be touched. And he detests the color yellow.”
I paused. What does having no understanding of human emotions even mean? What would that look like? Does having trouble reading facial expressions mean one doesn’t understand human emotion at all? Does not conveying emotion through one’s voice mean one doesn’t understand emotion? How can someone who has a human emotion, “he detests the color yellow,” be described as someone who doesn’t understand human emotions?
The search revealed a few hints to a backlash from the autism community but it took multiple searches with adjusted words to actually find any of that backlash. Finally down toward the bottom of the search page on my “curious incident of the dog in the night-time autism perspective” search, I found an article on the WHYY homepage, written by P. Kelly, an author with autism. This article focused on the issue of stereotyped representation in the book. P. Kelly points out how the character is shown to be violent, which is a common misconception about autism. It is well documented, but not well-known, that violence is committed against people with autism much more often than it is committed by people with autism. All this rhetoric about having no understanding of other humans makes autistic people seem alien, automatic, disconnected, violent. This image makes it easy to justify isolation. It’s easy to imagine that people with autism prefer to be alone.
Christopher is depicted as having a lack of empathy. Again this. I can’t wrap my mind around it. My son suffers from a deluge of empathy. He has so much empathy, he cries when I cry. Mark Haddon, the author of The Curious Incident of the Dog in the Night-time admitted to not studying much about autism before writing the book. Both the playwright and the novelist claim they didn’t because their character is just a person who doesn’t necessarily have any diagnosis. Since everyone with autism is different, their character could or could not have autism. It doesn’t matter because he’s just himself.
But it does matter. Because people with autism don’t get to just be themselves. They are told in thousands of small ways that they aren’t right as they are. They are corrected. They are instructed. My son is taken out of his regular classroom to be taught how to have a conversation. As much as he might benefit from this support, how often are his classmates taken aside to be instructed on how to be more open-minded listeners or how to invite someone new into a conversation? Never. The assumption is that they are normal and my child is different, so he needs to be taught how to be more like them.
Over time the message gets repeated: he doesn’t get to be himself. He has to try hard to be like someone else. Every person with autism might be different, but they are similar in how they are treated by their world. The only thing I knew about that book before my colleague suggested it was that it had a main character with autism. It’s what it is known for. I intuited the caution with which I approached it, and rightly so. It’s a cop-out for the author to say the character is just a character. You can’t allude to autism and then say you aren’t writing about autism. You can however say you made a mistake and should have done more research before you wrote your book.
All of these thoughts were the easy ones to come to. They were there, in my heart and my head and then written about more eloquently by other authors online. What came harder was the realization that I’m not immune to thinking of my own child through stereotypes. The stereotype of Christopher, of white boys with autism, stared at me through this book. Christopher is really good at math. My child is too. Early on, I grabbed onto this strength as something to celebrate. But was I clinging to this as a way to avoid knowing my actual child? It was such an easy thing to go to: a bright child who excels at math but struggles to make friends. Well, we can’t have it all. I might as well have laughed dismissively as I downplayed the humanity of my own kid.
I can celebrate his strengths, but I can’t assume I know which of his qualities are strengths and which ones are not. All of his qualities are him and all are useful and meaningful to him. His math skills may help him find his way in a world that otherwise doesn’t have much room for him, but I dearly hope he doesn’t come to see himself as just being valuable or useful because of math.
Even though my son is in many ways a stereotype of the” autistic person” in the collective imagination, he hasn’t ever fit other aspects. He prefers the company of other people to being alone. His favorite thing in the world is talking for hours with his brother. Left alone, he doesn’t really know what to do with himself. He’ll read for a bit but he’d really rather be with people. He loves to draw and to listen to music. As I mentioned before, he’s loving and empathetic.
The diagnosis criteria need to be there. There has to be something autism is and something it is not. At the same time these criteria and expectations can prevent me from seeing my own child with unfettered eyes. Are they also preventing me from seeing myself the same way?
I tried to talk this through with my therapist. I mentioned the suspicion that I might have autism. She took out the latest iteration of the DSM and kindly and slowly read through the diagnostic criteria with me, giving me time to think about whether I fit it or not. She asked me for specific examples. As is often the case whenever I am asked a direct question about something, or asked to give examples, the thoughts just flew out of my head. This happens to my son too. I stumbled to think of things. I said that I noticed that many things that my son does on the outside, I do internally. But then I couldn’t think of an example. I couldn’t think of the way I seethe inside until I feel physical discomfort, particularly in my joints, when I don’t understand what is happening or how to participate in a conversation. I couldn’t think of the fact that the noise of my own children leads me to sometimes escape into my room with the door closed, even though their noises are joyful and not even all that noisy. Or how I wish I could escape even more often, even though I love them and want to be with them.
I left the conversation feeling fairly certain that I don’t have autism. We resolved ourselves around the question of severity. Am I currently struggling? Not really, unless you count everything I just mentioned as struggle. Have I struggled throughout my life? Yes, it’s been a struggle all along, but is this the reason for my struggles? I can’t say. And so we land on no, unlikely, not worth several thousand dollars I don’t have for a neuro-psych evaluation that may not turn up anything significant. I am just a typical person with a typical level of difficulty.
As I left the conversation, I felt a bit adrift and uncertain. Based on my previous reading and likely useless internet questionnaires, I was surprised to have it be such a clear no. Had I attached myself to a single answer to a many-layered question? It could be. The idea of being able to say I have struggles because I have autism is more comfortable than saying I have struggles for who knows what reason. Everyone has struggles. Why are mine more significant than others?
I ask myself if the autism diagnosis is appealing because I want to write about autism and I don’t feel I can if I don’t have it. Maybe. Regardless of where I land with a diagnosis, neurodiversity shapes every day of my life. Because we have one member who doesn’t fit in the world as it is, we all don’t fit. It’s a gap we haven’t yet figured out how to bridge. I get it. Most people don’t even really know what autism is.
If autism is not my experience, what can I meaningfully say about it? One day my son will be a grown person and I doubt he will appreciate me writing my thoughts and feelings about him in a public space. He will want to be his own person who establishes his life direction on his own terms. And so perhaps there is nothing for me to say about autism at all, except that it affects my days. It affects my nights. But it’s not about me.
Except. Except that the diagnostic criteria that my therapist read me left me feeling something else. My “very typical person with autism” son didn’t fit it very well either. Perhaps the problem isn’t just in me, it’s in trying to create a framework for a diverse way of being. Maybe the DSM isn’t quite there yet. While autism public relations may be making progress–we finally got rid of the Nazi child-murderer, Hans Asperger–it still has a long way to go. Over time, the diagnostic criteria may change to include the people it currently most often excludes, namely women from any racial background and people of color of all genders. Maybe then I will see myself better reflected in it. Maybe not.
Autism is usually articulated as a spectrum. This creates an image in most people’s heads that is akin to the PH scale: a color gradient from normal to really not normal. We don’t say those words because we know they are hurtful, but this image is what the spectrum implies. It’s true that autism manifests in people in different ways. It will even show up differently in one person from day to day, or hour to hour, minute to minute, depending on the surroundings. An autistic person who is in an environment where they feel accepted and relaxed is likely to behave differently than they would in an environment where they feel tensed and stressed, as anyone would.
I am left feeling that the images and language we have to describe a person’s lived experience is woefully inadequate. If the DSM and the spectrum itself don’t do the experience justice, what might? While it’s unlikely that books and television shows featuring autism-adjacent characters written by people who don’t have autism aren’t likely to go away anytime soon, I can hope that space will eventually be created for authentic autism voices. Until then, I’m not sure I can get an honest answer to my question. But I’ll be waiting, creating my own internal space for a voice to speak about autism in a way that finally resonates with me and my family.
About the author
Heidi Davidson-Drexel is a parent, middle school teacher and writer from New England. Her work has appeared in Longridge Review, Cagibi, St. Ann's Review, and Barely South Review. She lives in Portland, Maine with her wife and kids.
about the artist
Chicago-area based Native American artist James Tipton repurposes his acrylic paintings of nearby woods and forest preserves through a captivating blend of traditional and digital art. The process begins with his original paintings, landscapes, and organic forms bursting with color and texture. Through this exploration, he embarks on a digital metamorphosis, reworking and reinterpreting his paintings to express something new. The resulting artworks transcend their origins, evolving into mesmerizing digital landscapes that resonate with his love for often-visited places close to home. To see more of Tipton's work, visit https://tiptonartdaily.wordpress.com.