Why Don’t You Write About Autism?

“Is this turquoise?” Ethan asked. He was looking up at me, presenting a little Hot Wheels car for my inspection. 

“Well,” I said, looking at the car, “I think that’s maybe more of a light blue.” 

A few minutes later, he came back with a crayon. “Is this turquoise?” 

I took it from him and turned it around, reading the label. “Hmm . . . it says ‘aqua,’ but that’s kind of like turquoise . . . I think you could call it turquoise.”  

Ethan asked this question a lot. Turquoise was his favorite color, and he liked to point to things—toys, clothes, markers, random objects lying around—and say, “Is this turquoise?” whenever he got the chance. It was sort of his catch phrase, his mom later told me. But I didn’t know that at the time; this was the first time we’d met. 

Ethan was a would-be friend for my son. A set-up. A not-so-blind date. They are both on the autism spectrum, and they met in a social skills class when they were around six or seven years old. His mom and I set up a few playdates, ever hopeful, but the two boys were not very much alike, and despite our best efforts, the friendship didn’t really take. Nonetheless, even though we only had a few brief and awkward encounters with Ethan, he left a strong impression. 

A side effect of spending time with him was realizing that turquoise was sort of hard to define. It turns out that not many things are really turquoise (other than the actual gemstone). But mostly, I was enchanted by the sound of his question, the phrase coming back to me from time to time, his soft, melodic voice ringing in my ear. The whole idea of looking for turquoise seemed full of poetic possibility.

I even thought I might use Ethan’s catch phrase as the title for this essay. 

But then I thought, “Who am I to use this little boy for my cheap metaphor?” What if his mother came across an essay titled “Is This Turquoise?”  She would recognize it immediately. She might feel betrayed, like something had been stolen from her. Stolen from her son. 

If I were her, I’d think, Who the fuck are you to turn my little boy into a metaphor? And for what, anyway? So you can spin all kinds of deep meaning out of his innocent phrase, his little patch of blue? So you can feel good about yourself as a writer? Is it worth it? Is that turquoise? Is it?^[1]

The truth is, I have a hard time writing about autism. And yet, I feel like I should be writing about autism. Because I’m a writer, and because my son is autistic. But I always get stymied by the feeling that I’m exploiting him. It’s not that I’m “stealing” from him, exactly. After all, I’m writing about my own life, my own experiences. Still, whenever I write about my son, or about autism in general, I feel like there’s an unspoken announcement, an agreement with a potential reader that says, my life as a mom of an autistic child is bad, or outside the norm, or the kind of experience that forces you to seek sympathy through art. 

Ultimately, writing about my son objectifies my son. Even if what I’m writing about is not him, exactly, not his experience, but my own—my experience with him—it takes that experience and puts it up for sale, or at least for consumption.   

As an English professor, a reader, and a writer, I should move past this. I believe in the transformative power of art. I know that artists and writers get material from their own lives and others’ lives and that reading is a way of understanding, of sympathizing with others, of bridging the gaps between us. And yet, in practice, it often just doesn’t feel right. It’s as if I can see the moment when I turn my own son into a literary device, and I shrink back, feeling queasy and alienated from my child.

Let’s keep our eyes, then, on turquoise. If Ethan were younger—if he were a three-year-old, say, repeating the same phrase over and over—we would hardly give it a thought. But he and my son were both around six or seven when they met. As kids get older, repetition becomes wrong, awkward; obsession becomes intrusive, disruptive, pathological. 

And yet, imagine if Ethan were a painter, focused on finding just the right shade, consumed with producing “turquoise” on his canvas. Buying it in a tube, he would be dissatisfied. Meticulously mixing his own color, creating the right shade, applying it with his brush—still, he would ask, “Is this turquoise?” No. Not rich enough, not blue enough, too blue—not having the quality “turquoise.” Looking forlornly at a piece of turquoise jewelry he borrowed from his wife, or the turquoise trinkets he bought on the side of the road in New Mexico, staring at them until finally he asks himself, are they even turquoise? Does turquoise—pure, true turquoise—even exist?  

What would Ethan be perceived as then? A great artist, a color prodigy, a savant? His autism, then, would be seen as the key to his genius—or maybe it would be rebranded as eccentricity.

At least, that is still the stereotype and the fantasy. People want autistic kids to be prodigies of one kind or another. In reality, he will just grow up, people learning to ignore his question. Adults tend to lose patience with childish things, and when a question is understood in the context of autism, it just becomes another socially inappropriate tic or repetitive behavior: it disappears; it goes unheard. 

In reality, most autistic kids aren’t prodigies or savants, and most obsessions are not fodder for poetry. I met a woman whose 20-year-old autistic son is struggling to find a way to make a living. “He really likes washing cars,” she said, wistfully. Years of effort, the exhaustion of trying to figure it out every single day, showed on her face. She brightened when she told me she’d found a local college that has a car detailing program. “Maybe,” she said with a sigh, “he’ll be able to do something he likes.” 

I related to her fatigue, to her struggle with the everyday challenges facing her son. But I hesitate to write about parenting on the spectrum as negative, exhausting—a site of disappointment and disarray. My life with my son is a source of joy. It is about so much more than deficits and challenges. It’s about so much more than autism. 

But, hey, let’s be honest, it’s also a struggle sometimes, and I do sometimes feel alienated, and, and, and . . . But this is what keeps me from writing. I don’t want to suggest that my experience is “less than,” or that, even when things are good, there’s a sinkhole of sorrow just beneath my feet. 

Writing helps, but writing also hurts. The release of sharing is accompanied, always, by guilt. I can’t shake the feeling that I’m betraying my son—leaving him, in a way. Any linguistic phrase, no matter how beautiful, will be something different, something else. Any portrait I paint will pale in comparison to the nuanced, colorful, and often discordant palette of maternal experience. 

I can’t help but feel that, in writing, one turns away from the child and toward the writing, away from the reality and toward the metaphor: the shiny object, the mesmerizing turquoise gem, that beautiful image that you have shaped. There is, after all, so much more control in writing than in parenting.        

Putting a more positive spin on things, one might say that in writing, we turn toward the child—that we are trying to understand, to sympathize, to bring them closer. That’s what a metaphor does: the word metaphor comes from the Greek, meaning “to carry over” or “to transfer.” A metaphor takes one thing and “carries it over,” comparing it to another thing such that “[t]hings or ideas which were remote appear now as close.”^[2] By writing, by using symbols and metaphors and imagery, we force language to reach out past the literal, to carry us over the boundaries of identity, expression and meaning. In the process, we expand and even explode meaning; we open up a new way of seeing and understanding. So, in that sense, I write about my son to understand my son, or to make others understand him. Or at least to make them understand my experience with him, to help them see autism—and parenting in general, perhaps—in a new light. Maybe. That might be it. 

And yet, part of me thinks that a metaphor doesn’t make one thing like something else; rather, a metaphor turns one thing into something else. Magically, turning one thing into another very different thing is what brings us closer to that first thing, as in, say, “‘Hope’ is the thing with feathers.”  When Dickinson says that hope is a bird that “perches in the soul,” we can almost feel the flutter in our chest; we can almost hear the imaginary birdsong. At least, that’s the hope of the writer; that’s the hope of figurative language. 

But when it comes to writing about autism—or about one autistic child—what we do too often is run away from that child to another place (or maybe to another thing, to an image or an abstract idea). 

When my son was very small, when he still struggled to communicate with speech, he wrote a very short story. He was only three or four but could read very early, and he loved to type on the computer. The story went like this: Once upon a time there was a little boy and he was a little bit upset about the door he squeezed it because his hands were too slippery because the door was stuck Mommy unlocked the door and they lived happily ever after the end. 

The story was true—it came from a frightening experience he had of being trapped in the bathroom. But I quickly started to think about it metaphorically: its little problem seemed to reference so many others we’ve faced—the challenges of autism, to be sure, but really the challenges of growing up in general. It’s a story about being locked in, and then finding out that someone is there, on the other side of the door, to let you out. That’s a nice way to think about it—or is it? 

I was immediately drawn to “locked in” as a kind of metaphor for autism, for the struggle to communicate, but I think that was taking the easy way out. The metaphor was there for the taking; it universalized, but it didn’t do justice to the reality and specificity of the experience.

Thinking and writing about my son’s little story gave me a space to muse, to imagine, to go beyond the mundane and frustrating realities, the hard limitations, the small suffocating room that autism, and parenting in general, can sometimes be. My son was literally trapped, and maybe I felt that way too, sometimes. 

Maybe all writing is like that; maybe all metaphors offer an escape from the hard, stubborn, literal thing—a vehicle that takes us somewhere else, somewhere we want to go. Somewhere we’d rather be.

But for my son, the story served a function: it helped him work through his fear. He wrote that same story over and over. Repetition, it turns out, can be powerful. Going back to that scary place, to its hard objects and sensory details—to what literally happened—helped him to manage his emotions and to feel a sense of control.

When I asked my son about it years later, he was very clear: it was a scary story about a frightening experience. It was important for me to understand it for what it was, a story about literally being trapped. I needed to understand it from the inside. Maybe writing can be understood that way, too—not as a way out, but as a way in.

And that’s why maybe, just maybe, we should spend more time with the literal, before we vault over it with metaphor. There’s a lot there, a fullness that we may not be aware of at first glance. Maybe we should spend time looking hard at the thing itself, or the person, or the experience right in front of us. Not running away to find something like turquoise, but waiting, being patient, and, like Ethan, turning over every rock until turquoise reveals itself.

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[1] I have since asked permission from “Ethan’s” mother to write about her son’s love of turquoise, and she granted it. I am thankful for her generosity. I have not used her son’s real name.

[2] Paul Ricoeur, “The Metaphorical Process as Cognition, Imagination, and Feeling” in On Metaphor, ed. Sheldon Sacks (Chicago, 1978), 141-157.