Teaching Writing to Children with Autism While in the Grip of Anxiety
Sarah Fay on Navigating Not One But Two Entries in the DSM
The classroom smelled of bleach, baby wipes, and pencil shavings. And apple juice. And pretzels. The shelves weren’t lined with algebra textbooks; they held finger paint and crayons, plastic baggies, hand sanitizer, and boxes of surgical gloves.
Ms. Madelyn stood at the blackboard writing. We were waiting for the other six students, who were with the nurse. Only Natale and Kimberly—both sixteen, the only two girls, and the only two students in the room—sat at their desks. Natale had shoulder-length brown hair, the ends jagged. Her arms were crossed in front of her chest. Kimberly was doe-eyed.
I went through the handouts I’d brought. The arts organization I worked for sent writers into the New York City public schools to teach creative writing. (Calling me a professional writer was a stretch, but I’d been published and received fellowships to elite artist colonies and interviewed the poet Jack Gilbert for The Paris Review and so could be said to hover around the nether regions of “the literary world.” I’d also enrolled in an MFA program in creative writing.) The arts organization had an impressive roster of authors who’d done what I was doing: June Jordan, Kenneth Koch, Phillip Lopate, Grace Paley, Muriel Rukeyser, Anne Sexton. For ten or twenty days, I was assigned to a school. I’d taught first graders in Queens to write haiku poems, seventh graders in the Bronx to write autobiographies, and tenth graders in Brooklyn to write short stories. More often than not, I taught special education students with severe mental and physical disabilities.
This high school in Queens was the kind a visiting writer wanted to be invited back to. I’d been there four years in a row. The bulletin boards hadn’t been ripped down. The clocks worked. The teachers weren’t burned-out, at least not in the special-education wing of the school.
Mr. Sam, the paraprofessional (an assistant teacher trained to work with children and teenagers with special needs), entered with the rest of the students in tow. All eight students in class had been diagnosed with autism severe enough for them to require an exclusive classroom. Steadman and Xavier each wore a backpack slung over his shoulder. The backpacks were a trend, something Xavier started to be like the students in the regular-education part of the high school. Xavier’s backpack was half-zipped and relatively empty, almost floating on his shoulder from the absence of books.
Kemal strode in. His school ID dangled from a lanyard around his neck. He put down his backpack next to his desk and headed in my direction.
When he reached me, he puffed out his chest. I knew what was coming.
He came close to me until his face was just a few inches from mine. “You talkin’ ta me?” he asked in a Brooklyn accent fairly reminiscent of Robert De Niro’s character, Travis Bickle, in Taxi Driver. “You talkin’ ta me?”
This was his way of saying hello. The first time he did it, I bristled, jerking back as if he’d accosted me. But with each occasion, I felt less threatened. He was just acting out the movie the way teenagers do; it just happened to be a particularly violent movie.
“You talkin’ ta me?”
I stepped back. “Okay, Kemal. Time to sit.” He nodded and went to his desk.
The twins, Bernard and Charles, entered with their nurse, Maria.
Their conditions were severe enough to warrant individualized care. Neither wore a backpack. One of the few ways I could tell them apart was that Charles yawned prodigiously and Bernard didn’t. They sat at their desks and began flapping their hands. Called “stimming,” this was a form of stimulation. Until Ms. Madelyn taught me about autism, I thought Bernard and Charles and the others displayed “autistic behaviors,” but they were acting in accordance with their experience of the world. It was perfectly normal. Ms. Madelyn told me to treat them like any other students.
Reuben lumbered in, walking stiffly. He, too, had a backpack balancing light on his shoulder. As he passed, he said hello, his affect flat, his gaze down at the floor. He asked how I was. I told him I was fine and asked how he was. He said he was fine, too.
The students eventually settled down. I started to tell them the Greek myth of Icarus. The idea was that after reading (or listening to) a particular genre of writing (a myth, a poem, a short story), they would imitate it by writing their own. In special-education classes, most of the students—particularly those who were nonverbal—couldn’t write. They either drew pictures or we prompted them with questions and wrote for them.
That day’s assignment was to draw pictures of their own gods. Ms. Madelyn, Mr. Sam, Maria, and I moved around the room, checking the students’ work, helping one student and then the next. Steadman was one of the few who could write. I peered over his shoulder at his paper. He’d written his name at the top of the page: Steadman Kennedy Onassis. That wasn’t his name, but like many teenagers, he was obsessed with celebrities; his preoccupation happened to be with the Kennedys.
Noel, a nonverbal student, was drawing on his own. He could write, too. I stood behind him. On his paper were circles and ovals and squiggly lines. The figure he’d drawn resembled a gryphon—half lion, half eagle.
I sat with him. “Can I see?” I asked, almost reaching out to take his paper.
He raised one hand to his ear and the other to his mouth, a sign that he was becoming agitated.
I pulled back. Unlike Kemal, Noel had clearly defined boundaries
when it came to personal space. “I’m sorry.” I stood. “Good job.”
As I went to work with Steadman, an unsettling edginess seemed to take hold of me. It had nothing to do with Noel. This wasn’t the sinking-hollow-emptiness. My grief had subsided though it had taken almost two years. (I never called that psychiatrist and didn’t see the psychologist again.) This was different—like being brittle and closed in at the same time.
On my way out of the school at the end of the day, I saw Jackie, one of the assistant principals. She had spiked, copper-colored hair. With ruddy exuberance, she asked me how it went. I said it went well. She smiled. “We’re so, so, so happy to have you.”
It was the height of the “autism epidemic.” The U.S. Department of Education had reported a 657 percent rise in the national rate since 1993. Autism supposedly affected 1 in 166 children. (That number would be said to grow to an implausible 1 in 54 by 2016.)
When Leo Kanner at Johns Hopkins University identified autism in 1943, just one child in thousands were thought to suffer from it. The term autism was borrowed from the Swiss psychiatrist Eugen Bleuler, who used it to describe a symptom of schizophrenia: predominance of the inner life and disassociation from the external world. Kanner defined autism as a developmental deficiency in sociability, communication, and activity marked by “altogether different” relations to other people and speech impairment. The children he observed were characterized by self-isolation, repetition, and an obsession with sameness. The American “epidemic” was helped along by media outlets and parents and teachers and social workers and psychologists and psychiatrists, but it was created by the DSM. Before autism appeared in the DSM, it was a rare disorder primarily associated with language and speech impairment. The DSM-III introduced autism as a standalone diagnosis from schizophrenia, characterized by impairments in communication, sociability, and responses to the environment. The DSM-III-R created an autism diagnosis centered on social functioning. In addition, the criteria was substantially broadened, and a child or infant could be diagnosed at any age.
Parents, teachers, social workers, psychologists, and psychiatrists believed autism was a biological disease. Many studies supposedly showed its biological origins. Genes were credited though no biological markers or causes had been found. Environmental factors were discussed, too. Pesticides and television were blamed. Vaccines were incorrectly faulted. (The Lancet, which published the famous vaccines-are-to-blame article, retracted it after it was proven to be fabricated.) The DSM-IV so broadened the diagnostic criteria with the addition of Asperger’s syndrome that the “epidemic” began in earnest. The Viennese pediatrician and eugenicist Hans Asperger coined the term Asperger’s in 1944 to describe children with “autistic personality disorder.” He later wrote that this disorder was nothing like Kanner’s “near psychotic” autism; Asperger’s cases were “very intelligent children with extraordinary originality of thought and spontaneity of activity though their actions are not always the right response to the prevailing situation.” The label Asperger’s wasn’t widely used to diagnose children until it appeared in the DSM-IV. Some on the task force that pushed to have it included later regretted it, saying there wasn’t data to back up the second diagnosis.
With so many children being diagnosed with Asperger’s, parents started internet support groups and increased public awareness. Asperger’s had cachet. Journalist Steve Silberman’s 2001 article “The Geek Syndrome,” published in WIRED magazine, connected Asperger’s to the (highly lucrative) dot-com boom. According to Silberman, Asperger’s was a collection of “geek traits” originating in Silicon Valley, birthed by successful math-and-tech-obsessed parents.
The students in Ms. Madelyn’s class didn’t have Asperger’s; they had straight-up Kanner autism. They were either “nonverbal” or used autistic speech patterns like echolalia (when I’d say hello to Kemal, he often repeated, “Hi, Kemal”) or spoke of themselves in the third person (“Kemal wants a snack”). They suffered from intellectual disabilities and difficulty moving and walking. They didn’t create relationships with others the way we think of relationships. During that time, they were the best part of my life.
A few weeks later, I was at the school again. The edginess had kept me up the night before; I’d paced my apartment. My thoughts spun, sharpening the edginess.
On my way to Ms. Madelyn’s classroom, it grew stronger. I entered the room. The students said hello. They were calm. It was cloudy. I had no scientific evidence to support my belief that an overcast sky seemed to settle them. Maybe the sun was too stimulating.
We read “Ode to Broken Things” by the Chilean poet Pablo Neruda. Neruda wrote many odes in praise of people and things. Most were meditations on the ordinary: socks, the dictionary, a tuna for sale in the market.
Poetry was everything to me then—partly because I was in an MFA program in poetry and partly because poems could be read in stints, even when the edginess had crescendoed to a pitch. I read almost nothing else. No novels. Few essays. Never the news. When I felt well enough, I went to poetry readings at the 92nd Street Y, Poets House, the Bowery Poetry Club, or KGB Bar.
I stood at the front of the classroom and read Neruda’s poem to the students:
Things get broken at home
like they were pushed
by an invisible, deliberate smasher . . .
Life goes on grinding up
glass, wearing out clothes,
and what lasts through time
is like an island on a ship in the sea,
surrounded by dangerous fragility
by merciless waters and threats.
I read the last lines: “So many useless things / which nobody broke / but which got broken anyway.”
The students seemed not to have heard me. Reuben stared at his paper and hummed. The twins sat with their backs to each other. Kemal rocked back and forth, a movement that some people with autism find soothing.
I reviewed the poem and asked what was broken. After I repeated the question a few times and gave examples, Bernard’s hand shot up in the air. “The plates broke.”
“And the house,” Charles said. They had been paying attention.
We started the writing exercise. Ms. Madelyn went to Steadman, Mr. Sam to Noel. Maria assisted the twins.
When I sat beside Natale, I asked what kinds of things break. “Hearts,” she said.
I wrote Hearts break on a sheet of paper.
“What else?” I asked, the edginess starting to return. “Do glasses break?”
“Hearts,” she said again.
Her voice was barely audible, not just because she spoke softly but because my heart had started to pound. The sound echoed in my ears and through my mind, making it hard to hear her at all. It didn’t pound in the way we normally think of it. It sounded and felt almost violent, as if it was trying to detach and break through my rib cage.
My bike ride home was five miles. I turned onto the most dangerous stretch—Vernon Boulevard. No bike lane. A truck barreled past, billowing exhaust. Sweat beaded down my face. It was June but not that hot. A car came so close to me that its side mirrors nearly swiped my handlebars.
The edginess didn’t go away—not after I brought my bike inside my apartment, my legs so shaky I thought my knees were going to buckle. Not after I’d eaten what little dinner I could. Not as I lay in bed inhaling shallow sips of breath. Not as thoughts bombarded me, particularly the fear that I was losing my mind.
The rush of energy in my chest and pressure on my stomach stayed with me for days, becoming even more tormenting. All I wanted was for it to go away, which made it worse. It was like being rattled from the inside until I felt like I was splintering.
The human tendency toward anxiety goes back thousands of years. In ancient Greece and Rome, Epicurean and Stoic philosophers offered tips on how to avoid it. (Spoiler: Stop worrying about the past and fearing the future.) In seventeenth- and eighteenth-century medical textbooks, along with the first descriptions of panic attacks, it was listed as part of melancholia. The symptoms were severe: hallucinations, mania, and delirium. In the nineteenth and early twentieth centuries, Kraepelin saw it not as a disorder but a symptom of many disorders, including manic-depression; to Freud, it was its own neurosis.
Anxiety was classified and reclassified with each edition of the DSM. In the DSM-I, it was listed as the main characteristic of psycho-neurotic disorders and was used almost synonymously with neurosis. (The 1950s and 1960s are often referred to as “the Age of Anxiety,” to use W. H. Auden’s phrase, but it wasn’t the anxiety we know today. Its symptoms were more typical of depression: sadness, malaise, headaches, fatigue, loss of appetite.) The DSM-III moved away from promoting anxiety as a neurosis and broke it into nine separate conditions, including phobias, panic disorder, generalized anxiety disorder, obsessive-compulsive disorder, and post-traumatic stress disorder (PTSD). The DSM-IV added acute stress disorder as an anxiety sub-type. The DSM-5 placed anxiety on a series of spectra with OCD and trauma- and stressor-related disorders.
It seems so mild: anxiety. Worry, nervousness, unease. But the mere presence of it has been shown to increase the chances of suicidal ideation and suicide. Anxiety makes a person feel besieged and threatened when there’s no threat. Those rushes of energy I felt, the shakiness and edginess and splintering and catastrophic thoughts made me ten times more likely to end up in the dark place I eventually did.
Adapted from Pathological by Sarah Fay and reprinted with permission from HarperOne, an imprint of HarperCollins Publishers. Copyright 2022.