On autism, misfits, and neurodiversity
When I was thirteen, I went to an alternative school on a farm. The alternative school was for kids who didn’t gel with a more traditional schooling environment. Some of us had diagnosed learning disabilities, some behavioral problems, and some had just grown bored of the state-mandated curriculum. The administrators whose brainchild the alternative school had been probably thought of it as a revolutionary educational experience, but in fact it was little else than expensive grunt work facilitated by Shirley, who owned the farm, and an instructor named Ms. Laurel.
Much of Ms. Laurel’s job was to provide us with “teachable moments,” which usually ended up being either farm-exclusive in their application or far below grade level: calculating the price of 1.43 pounds of beans if they usually sold for $3.00 a pound, jerry-rigging a fence for the pig pen out of corrugated metal siding, delivering a radically abbreviated (and slaughter-glossing) history of the Illini tribe whose territory the farm now stood on. We were miserable at the work. My best friend Devin and I were once given the task of carrying a hundred-pound bag of “natural fertilizer” across a field—“natural fertilizer” that was really the finely ground bones of deceased chickens. We dropped it midway and watched in horror as the bag emptied itself between two rows of tilled earth. Not knowing what else to do, we ran back to the farmhouse, dust-white and coughing up chicken particulates. The soy crop flourished in the roughly six-foot perimeter surrounding the site of the drop.
I ended up at the farm not because of behavioral problems, but because of my parents’ deep-held belief in the “betterness” of alternative schooling. I was generally unappreciative of their financial sacrifices and passion for my well-being. I had watched Disney shows featuring kids my age walking the normal hallways of normal schools, clutching their textbooks to their chests and talking about whether someone liked someone else. Girls held pencils with pink craft feathers glued to the top and raised their hands eagerly when they knew the answers to questions. Boys wore hoodies and big sneakers and high-fived each other in passing. I both feared and longed for such an environment. I wanted desperately to be normal, but I understood the many aspects of myself that would prevent me from ever being considered as such: a strongly pigeon-toed gait; granny glasses; all the wrong clothes; a restlessness in the classroom; a desire to learn, though not about the things I was required to learn about; and a temperamental impatience with any process that required cataloguing, filing, or lengthy and well-considered decision-making. The opposite of me would be a lithe-figured girl who liked physics, waiting patiently, and running track, who had a group of friends with shiny, ponytailed hair who’d follow her around and ask her if she liked someone and what his name was. She wouldn’t have friends like mine: Devin, who’d once sketched a picture of a bird with human biceps he’d titled “Crow in Hell,” whose parents were fine with smoking weed; Cody, who was surreally sweet-natured and whose Tourette’s-induced tics sometimes kept him from finishing his own sentences.
In mid-March of my year on the farm, Shirley ordered a special meeting in the Situation Coop, which was a former chicken coop that had been gutted and given an interior coat of beige paint. The prevailing smell was a mixture of latex and chicken shit. Shirley unlaced her boots, rolled up the sleeves of her work shirt, and shook her head as if she’d just been disturbed from careful thought. “We have a school group visiting today,” she told us. “So I need all of you to be on your best behavior.”
“We have school groups visiting literally all the time,” said Renee, who wore makeup and liked to talk back. I admired both things about her. “Why is this one any different?”
Shirley seemed ready to speak, then stopped. “It’s not that different,” she said finally, her hesitation belying layers of self-correcting subtlety I could sense without understanding. “It’s not as different as you’d think, I mean. They just require special attention.”
Ms. Laurel, standing stiffly behind Shirley in an awkward uniform of khakis and an oversized flannel that must’ve belonged to her ex-husband, nodded in approval. My interest was piqued, but I said nothing.
That afternoon a long white bus pulled up in front of the farmhouse. Only Cody and I stood to greet it; everyone else was either busy in the fields or pricing strawberries and squash in the farmhouse’s back room. We each carried two cucurbita gourds on which we’d drawn cartoon faces with magic marker, intending to hand them over to whichever kids showed the most interest.
The doors of the bus opened and sighed out a head-banded woman who said, “I’m Luz! Where’s your teacher?” She held the hand of a kid who looked to be about ten years old, with an untrendy bowl cut fringe and tired-looking eyes. He looked at the ground, flapped his free hand, and made a croaking noise. Cody and I watched him.
“Excuse me?” Luz asked, and the kid next to her began jumping up and down in agitation.
“They’re inside!” I said. “Sorry.”
“Sorry,” Cody echoed, and pointed his gourd-filled hand behind him. “They’re—they’re in the building there. Shirley said you guys can just go in there.”
Luz nodded and motioned to someone behind her. There was a commotion on the bus, screeches and more croaking noises, and the sound of another woman’s voice speaking in stern reassurance. The bowl cut kid took loping skips alongside Luz. He didn’t notice us. Neither did any of the others who filtered out of the bus—mostly boys, most of them held in check by teacher-aides like Luz. None of the kids looked me in the eyes or expressed interest in the cartoon-faced cucurbitas I held. I felt rebuffed.
Inside the farmhouse, Shirley and Ms. Laurel stood in front of the cash register as they usually did when school groups came. With a nod from Luz, Shirley began her School Group Speech, describing how in 1974 her family had made a heroic purchase of the farm from a corporate landowner who was about to build a mall on the very spot where we now stood. I became aware of how stringy and high-pitched Shirley’s voice was, how the low-hanging eaves of the farmhouse trapped it to ill effect. I exchanged glances with Cody, who had relieved himself of his gourds and was banging his forearms together in nervous repetition. This was one of his worst tics. He knew before I did that something awful was about to happen.
One of the kids screamed and threw himself on the floor. He pedaled the air and howled, preventing anyone from getting too close to him. The aide standing next to him dropped to kneel by his side. Shirley stopped her speech. Other kids started screaming too, and heading for the back door behind the cash register. Ms. Laurel tried to stop one of them, but he elbowed her in the stomach. The few girls in the group were laughing; one hopped from one foot to the other.
Luz headed for Patient Zero, who remained on the ground but slowed his kicks when he saw her approach. Cody and I followed, standing behind her under the foolish pretense that we’d provide help if she asked for it. The kid was albino, with thick glasses that looked to be made of foam or felt and fastened in a tie behind his head. They’d ridden up his forehead in the scuffle, giving him the appearance of an old man who’d paused his reading to focus on something in the distance. Luz crossed his arms over his body and held his wrists at his sides. She said, “You’re OK. You’re gonna be OK.” The kid’s breathing slowed. He closed his eyes and hummed.
Luz was pulled away by Ms. Laurel, and Cody followed them. The newly calm Patient Zero shook his head, looked at me briefly, and then stood up and walked out the unmonitored front door of the farmhouse. I followed him.
Outside, he stopped at a muddy patch of grass directly next to a gravel path, tilted his head to one side, spun around a few times, and sat down. I stood behind him and to his right: He was picking thicker-than-average blades of grass and neatly peeling them apart into thinner ones. He made a sound like owh owh owh. I moved to kneel in front of him. He was a little larger than I was and probably around the same age.
“Hi,” I said. “Do you like the farm?”
He continued peeling the blade of grass. A few seconds after I’d finished my sentence, he flinched in what looked like disgust. The dark circles around his eyes were made prominent by his glasses.
“Are you OK?”
He kept on peeling the blade of grass.
“Well, I hope you’re feeling better,” I said. “I brought presents for you.”
I extended both the gourds to him. He dropped the blade of grass and looked at them, nodding his head in what I assumed was delayed recognition of everything I’d said. I smiled, congratulating myself on connecting with someone who just minutes ago had been making one of the worst noises I’d heard in my life. I would go home and tell my parents about it over dinner and they would praise me for having made a new friend. He moved to touch one of the gourds, then held his hand back. I thrust both gourds forward, imagining he wanted a better glimpse of their cartoon faces.
“It’s OK,” I said. “You can touch them.”
We locked eyes, but his expression was dense, unreadable. He inhaled deeply and screamed in my face.
I dropped the gourds in a panic. He screamed again, louder than he had in the farmhouse. Then he picked up one of the gourds and pitched it past my head, into the field several yards away. My face went flush with humiliation; I stood up and backed away.
With all his force, he began to throw his head against the ground repeatedly. I watched in amazed horror as he did this, his head just inches from the gravel path. With every rough crack of his skull against the dirt, his skin split a little more, and eventually he was bleeding: a sticky clot at his temple that leaked down the side of his head, across his face, his neck.
Luz was standing behind me. I turned to her, tears in my eyes, sputtering for an apology. She ignored me and approached the kid, calling his name, asking him calmly to please stop, as though he was doing something as innocuous as coloring on a wall.
I ran from the scene to the washroom behind the farmhouse and vomited in the toilet between the cobwebby washer and dryer. When I was finished, I sat with my back against the dryer, hugged my knees, and cried.
In my limited experience, love is the emotion that makes the arduous project of living out a human life not just bearable but actually desirable. We have children in anticipation of watching their lives fill with love: for us, for others, for things and places and ideas. Children disappoint their parents by loving the wrong things, the wrong people. I’ve watched my own parents attempt to steer me towards loves resembling their own, as if I would be happy building a guest house for myself in their too-familiar universe. Love provides us with our first lessons in treating our beloveds as we would like to be treated. After this comes the lesson that there is another human mind on the receiving end of our affections, and after that the lesson that the world is filled with such human minds. This is empathy: the ability to imagine another’s emotions, to be as interested in minimizing the pain of others as you are in minimizing your own. The capacity to demonstrate love and empathy, more than the capacities to demonstrate anger, sadness, and even rational thought, remains our basic assurance of another’s humanity.
Among those who know little about it, autism is often regarded as a lack of empathy, a “mind-blindness” to the existence of other feeling beings. Stereotypes suggest that it’s either an inability to receive and return love or an inability to signal one’s capacity to do these things. As Andrew Solomon writes in Far from the Tree: Parents, Children, and the Search for Identity, “The question of how we love people with autism is Pascalian. If they can receive affection yet are not given any, they doubtless suffer. If they cannot receive affection yet are given much of it, that affection may be squandered—presumably the lesser of two evils. The problem is that emotion is not gratis.” Solomon’s point is that even the most devoted and selfless parent seeks a reflection of their love in the growth of their child.
The Swiss psychiatrist Eugen Bleuler first coined the term “autism” (der autismus) in 1910, in “The theory of schizophrenic negativism” in Psychiatrisch-Neurologische Wochenschrift. He derived it from the Greek word autós, meaning “self”: A schizophrenic exhibiting autismus was terminally self-absorbed, “[withdrawn] to his fantasies, against which any influence from outside becomes an intolerable disturbance.” In 1938, the Austrian psychiatrist Leo Kanner began observing a group of eleven children who showed the same cluster of antisocial and repetitive behaviors Bleuler had described, but whom Kanner did not identify as schizophrenic. Borrowing Bleuler’s term, he classified them as exhibiting early infantile autism. “All of the children’s activities and utterances are governed rigidly and consistently by the powerful desire for aloneness and sameness,” Kanner wrote in “Autistic Disturbances of Affective Contact,” his 1943 study of the children. “We must, then, assume that these children have come into the world with innate inability to form the usual, biologically provided affective contact with people.”
It’s Kanner’s usage of the word “autism” that persists in our present-day description of the neurodevelopmental disorder, and some of his writings encouraged the notion that autism was caused by “refrigerator mothers,” women whose coldness toward their children left them incapable of expressing emotion.
As the twentieth century wore on, the psychiatric community abandoned the refrigerator mother theory. Autism came to be thought of as a disorder that manifested itself in as many ways as there were sufferers (hence the “spectrum” in Autism Spectrum Disorder, which is the term that appears in the DSM-V, the most recent version of the American Psychiatric Association’s diagnostic manual), with theories about its causes nearly as diverse: genetics, environmental toxins, complications during pregnancy, childhood illness. Individuals were unified only in their “stereotypies”: repetitive movements such as hand-flapping, rocking, echolalia, and behaviors such as obsessive play, self-isolation, and avoidance of eye contact. And they were still characterized as incapable of reacting meaningfully to the world around them. In 2001, Walter O. Spitzer, a professor of epidemiology at McGill University, described people with autism as having “a dead soul in a live body.”
Then something unexpected happened: Starting in the 1990s, the United States saw a dramatic increase in the incidence of childhood autism. Today, about 1 in 68 children has been identified with autism spectrum disorder, according to estimates from CDC’s Autism and Developmental Disabilities Monitoring Network. It was—and remains—unclear whether the spike in diagnoses happened because more children were developing autism, or because of increased awareness and better diagnostic techniques. There was talk of an “autism epidemic.”
Parents reacted by forming advocacy groups, lobbying for an understanding of the disorder that would offer a cure. Much attention was devoted to the notion that thimerosal, a mercury-based preservative contained in childhood vaccines, could be the cause of the disorder. The model and actress Jenny McCarthy, whose son has autism, adopted the vaccine issue as her cause célèbre, telling Time in April of 2009, “If you ask a parent of an autistic child if they want the measles or the autism, we will stand in line for the fucking measles.” (Last year, she published an op-ed distancing herself from the anti-vaccine movement.) Autism Speaks, one of the country’s largest advocacy groups—it was founded in 2005 by former NBC Universal CEO Bob Wright and his wife Suzanne, grandparents of a child with autism and has contributed millions of dollars in private funding to autism research—has been entangled in the controversy as well. Despite the lack of scientific evidence, for the “vaccines cause autism” theory, the group directed much of its initial funding toward research investigating a possible link between the two. In 2009 Alison Singer, chief executive and parent of a child with autism, resigned from Autism Speaks over disagreements about vaccine research. “When you start talking about what you believe and not what the data shows [sic], you’re talking about religion and not science,” she told The Daily Beast in 2014. (Autism Speaks now takes the position that “studies have not found a link.”)
Meanwhile, parent testimonials about “awakening” children from the disorder without the aid of psychotropics abounded in the autism community. Simply googling “autism natural cures” turns up a host of blogs, listicles, and even peer-reviewed articles suggesting that children with autism eat gluten- and casein-free diets, that capsules of fish oil and vitamin A or Hyperbaric Oxygen Therapy (breathing pure oxygen in a pressured room or tube—commonly used as a treatment for decompression sickness) or chelation (in which a synthetic solution called ethylenediaminetetraacetic acid is injected into the body to remove heavy metals and/or minerals) can do a lot more for a child’s psychiatric wellbeing than Risperdal and lithium. Behavioral methods are touted as well. There is Applied Behavior Analysis (a form of intensive therapy that teaches interpersonal, communication, and academic skills as well as gross and fine motor skills). There is the story of Tito Rajarshi Mukhopadhyay, an Indian boy with non-verbal autism whose mother unlocked his massive literary intelligence with her insistence that he communicate by writing. His poetry won him international attention, and his mother brought her Rapid Prompting Method to schools for children with autism in the United States. And then there are the straight “miracles”: Carly Fleischmann, a girl with non-verbal autism who suddenly began typing messages to her parents at the age of ten, has co-authored a book with her father called Carly’s Voice.
The 21st century has seen ASD emerge as an idée fixe among scientific and activist communities alike, and with that has come increased national attention and scrutiny. But popular attitudes about ASD have been slow to change since the Kanner era. The notion of autism as a soul-entrapment to be “awakened” from remains robust in our culture. To hear the various voices in the advocacy-and-debate firestorm tell it, autism is a neurological roadblock that renders one incapable of showing and reciprocating the love by which the neurotypical world counts us as capable, included, and whole.
A little over a decade after finishing my tenure at the farm, I found myself with a job like Luz’s, working as an activity instructor in a day program for adults with profound developmental disabilities. The program was highly praised for its compassionate treatment of its members. The building where the program was based—I’ll call it the Foundation—was clean and airy. There were classrooms, two kitchens, a lounge, an art room, and a gymnasium with basketball hoops, bikes, and a stage. One of the classrooms had a mat filled with foam blocks and a box of “sensory” toys: rainsticks, putty in plastic eggs, metal pins in a grate that could be pressed to produce a raised design. Some of the members at the Foundation used wheelchairs, and the board of directors was planning to make all doors motion-sensitive so these members wouldn’t have to be constantly reminded that the world was built for people functionally different from them. A calendar posted in one of the classrooms showed the activity plan for the week, which involved making soap for a craft fair, delivering food for Meals on Wheels, and learning janitorial skills.
The workings of the Foundation bewildered me at first. I tried to say hi to a member who looked at me blankly and then yanked my hair so hard I was on my knees. I watched as food was pressed into a mushy pulp, hung wet around the corners of mouths, dried to a brownish crust on shirtfronts. One member wore an apron across which she’d handprinted ketchup stains. Moments later, she was gritting her teeth in resistance as staff tried to remove a miniature screw she’d placed under her tongue.
Halfway through lunch during my first week, Sabrina asked me to go find L, whose OCD had been acting up. Sabrina was a longtime activity instructor who’d transformed herself into an exhaustive encyclopedia of the members’ needs; she was Assyrian, with expertly sculpted eyebrows and a frame that barely crested five feet. A non-verbal six foot two and three hundred pounds, L was over double my size and maybe triple Sabrina’s. I wandered the hall, nearly trembling with the pressure of this responsibility. I wondered if L was deliberately hiding in anticipation of terrifying whomever had been sent to find him.
The secretary in the front office rolled her eyes when she heard I was looking for him. “The boy’s bathroom,” she said. “That should always be the first place you check.” I nodded. I scanned my memory for ways I could’ve known this and came up blank.
I edged the bathroom door open as if I were a high school kid snooping on her crush. At first the place seemed deserted. Then there was a low-throated humming I could distinguish as L’s.
“Hey!” I said. “We need you at lunch, dude.”
The humming stopped. The air in the room became heated, annoyed.
I went in. To my immediate left was L. He sat on a toilet, the stall door wide open, his clothes in a pile on the floor in front of him. He looked at me and smiled, then looked down at a toy plane he was holding, hummed loudly, and snapped off both its wings. The skin of his shaved head was wrinkled like a sharpei’s. His briefs—wide and cobalt—lay close to where I stood. I considered picking them up and holding them out to him. He looked at me again and emitted a whinnying laugh. Then he stood up and closed the stall door. I ran back to the kitchen.
“Oh,” said Sabrina when I told her what I’d found.
“What do you mean ‘oh’?”
“Nothing. It’s fine. Let him hang out in there for a while.”
“But he’s naked on the toilet. What if he gets up and runs around the Foundation naked? What if he goes outside?”
She smiled pityingly at me. Another member snuck up behind her, flipped her sweatshirt’s hood over her eyes, and sprinted away. She pushed it back, unperturbed.
“Don’t worry about that,” she said. “He won’t.”
I sat back down to my half-eaten burrito. Minutes later, L emerged from the bathroom fully dressed and smiling. I waved to him and he shook his head and squealed in laughter.
As I spent more time with the members, their rhythms became more familiar to me. I saw firsthand that the spectrum of neuroatypical personalities and behaviors is just as broad as the neurotypical one. Some members with ASD were completely non-verbal and exquisitely sensitive to the people and things around them. Others were hyperverbal but only spoke in hummed jingles from commercials and cartoons. Others spoke freely, telling jokes, showing off their favorite YouTube clips of Chuckie and The Nightmare Before Christmas. One member comforted himself by giving hugs. Another spoke in punny Spanish—his second language—and carried around plush animals. Another was constantly playing herself in Candyland.
Even the highest-functioning (relative, of course, to an arbitrary Gold Standard of neurotypical behavior) members at the Foundation tested in the moderately impaired IQ range. A few held volunteer positions and part-time jobs, but the vast majority didn’t. Many still lived at home with their parents, cycling between the Foundation and behavioral therapists since they’d aged out of the educational services provided by the state of Illinois, which is a notoriously inhospitable place to have a disability: State funding for day programs is scarce, many facilities go uninspected, and the Americans with Disabilities Act has seen multiple infringements.
The Foundation was an oasis in the midst of all this. Some families sent their children there five days a week. Others struggled to find the money to pay for a once-a-week visit. It wasn’t uncommon to see the office waiting room full of desperate parents pleading their cases, and discretionary funds were always being rummaged up and turned into scholarships.
A handful of members stayed at residential facilities instead of with their parents. The Foundation was a few miles from one of the most infamous facilities in the tri-county area: Potent anti-psychotics were in frequent use and staff were poorly trained—one staff member told me that the pay hardly warranted training. Members happy to cook, sing, and make soap at the Foundation would wail in agony at the mention of “going home.” I was surprised to learn that a member to whom I gave a complicated series of cheerful high fives every morning had gotten so aggressive at the facility that he’d actually broken a staffer’s bones.
I drove the members around in minivans, played basketball with them in the gym, supervised time-outs on the sensory mat. I observed everything Sabrina said and did: watched her gently remind a member that he’d left a mop in the broom closet, watched her show another member how to glue glitter to a tree she’d drawn on a piece of construction paper. The member nodded, tracing the outline of the tree with her index finger. “She’s focusing really hard right now. She’ll let us know when she’s ready for the next step,” Sabrina said, and I tried and failed to read the member’s facial expression. Then I noticed the alteration in her rocking, the quick mincing movements she made with her hands.
A little over a month in, the trappings of neurotypical life began to seem absurd to me. This experience was akin to taking a psychedelic and never coming down: Every process by which I’d previously made sense of the world now seemed narrow-minded and inane. Why, for instance, do we say, “Thank you, that’s enough,” when someone’s pouring us a mug of coffee? Why not just say, “No more,” and grab the mug away? What does politeness accomplish, exactly? These little behaviors began to seem less like helpful translations of our essential nature and more like useless artifice designed to alienate everyone who wasn’t in on the game. Intelligence had to be more complex than one’s ability to sit still, make conversation, and dress for the weather.
These stoner thoughts crowded my head as I accompanied members to an ice rink, read picture books to them, assisted them in riding bikes in the gym. I was being paid somewhere in the neighborhood of $11.50 an hour to obsess over our unofficial criteria for whole and capable humanity.
Q was one of two sisters with autism. Her sister didn’t need the Foundation’s services, but Q did. She couldn’t make eye contact that wasn’t a quick, sidelong glance. She engaged in endless “stimming”—humming, hand-flapping, running back and forth across rooms—and loved drinking water, eating mustard and hot dog buns, and watching and rewatching the same scenes from The Little Mermaid.
Though facial cues and body language are obscure for many with ASD, many individuals learn them in order to offset the exhaustion and frustration of living in a neurotypical world. Q was considered low-functioning in part because she couldn’t or wouldn’t do this, and also because she rarely responded to spoken commands. She barely spoke at all except to say, “Ariel!” and “Water, please!” She took bites out of the bus seats and once bloodied her mouth by chewing on tacks from a corkboard. She smelled and licked most things she came into contact with, a process that required several seconds of unbroken concentration, after which she would close her eyes and make a series of small huffing noises, evidently meditating on the sensory input she’d just received. She seemed imperiously detached from whatever was happening in a room. If other members were decorating pumpkins, she was pouring glitter down the front of her shirt and then marching back and forth across the gymnasium stage. If other members were watching an episode of Sesame Street, she was standing a distance from the TV, her face to the rapt crowd, huffing and blinking repeatedly.
“She’s one of the smartest people in whatever room she walks into,” Sabrina said, beaming with a mother’s pride as Q spun in circles next to the TV. “She knows what everyone’s thinking. She’s really sensitive.”
I nodded, knowing better than to question Sabrina’s wisdom. But I struggled to understand how Q processed things. L looked at the Scholastic Encyclopedia of the Universe, using my hand to turn the pages and grunting in delight when I announced the heading on every page: sharks, shi’a islam, shinbones. Q, by contrast, looked away from whatever was shown her that wasn’t a YouTube video of The Little Mermaid.
We got a staff email: Q’s sister had fallen sick a few days ago and been hospitalized. We should engage Q with questions about her sister, ask her how she felt and whether she needed to take a break from her activities. I was one of the instructors assigned to help her in Social Class that afternoon, and I had no idea how to ask her about any of this. Sabrina told me to speak without worrying about traditional responses, the most Yodalike piece of advice she’d given me yet.
In Social Class Q left the group early on, huffing and blinking, and sat down on the sensory mat. I followed her. She lay on her back, tenting her fingers, and looked at them intensely. She appeared to be either lost in thought or about to give a speech.
“Are you feeling sad?” I asked, and held my hands out in front of me in the Yes/No fashion we’d learned during orientation: a swat at the left hand meant “no”; a swat at the right meant “yes.” I listened to her raspy breathing.
“Tickle my fingers,” she whispered, and looked at me. Then she looked away.
Shocked, I ran my fingers up and down her tented hands. She laughed. This was not normal for Q. I replayed the events of that morning with the awed clarity of someone who’s had cataracts removed. She’d hummed and spun excessively during lunch. Why? Because she was in a state of distress. Like anyone who’s in a state of distress, the things that normally bothered her bothered her even more. Noise and light overwhelmed Q, I knew, and she stimmed to keep herself grounded. She’d done the same thing yesterday, too, and with manic energy the day before—the day her sister had fallen ill.
I scrolled through images of Q in my head: running laughing down the hall, refusing to get off the exercise bike, asserting her preference for shiny objects over dull ones. I saw that her behaviors had purpose, had intentions that reflected her surroundings as reliably as my own. She was coping with the miserable anxiety of loving a sick sister in the best way she knew how. She hadn’t wandered from Social Class in absent boredom: She had assessed the situation and found it too intense, deliberately selecting the sensory mat as a place to decompress. And she’d observed me, too: She’d known I was going to strike up a conversation with her, known that I’d delight in her request to tickle her fingers.
I also saw how incoherent the neurotypical approach to her situation must have seemed. Why try to tack synthetic, nonnative words onto the experience of a difficult emotion? Why tell these words to someone who was not in my head, and therefore may risk misunderstanding them? Why contort my face into an imperfect reflection of these words, which were in turn an imperfect reflection of the emotion?
I tickled Q’s fingers and she laughed.
Those with autism have described the experience as a cacophonous flood of sensory information frequently painful in its onslaught. Lamplight can have the retina-detaching quality of a solar eclipse, an average conversation the eardrum-pounding effect of a screaming chorus, a clothing tag the itchiness of a hairshirt. Neurotypical perception is decidedly muted by comparison: We tend to tolerate light, filter out irrelevant noise, and resolve itches with a simple scratch. In Carly’s Voice, Carly Fleischmann says she stims to prevent herself from becoming overwhelmed by the “sensory overload” of her surroundings. Rocking and hand-flapping give her comfort, allowing her to divert her focus from the intensity around her to her body’s rhythms. We can all appreciate the mooring aspect of a rhythm, since we all began as fetuses growing to the metronomic comfort of a mother’s heartbeat. Stimming is a reassuring bassline in a soundscape of high-volume static. At times, that static can become so unbearable that the only recourse is self-harm.
The “autism epidemic” has led to a search for causes and cures; it has also led individuals with autism to begin advocating for themselves, recasting the public image of ASD as a rich identity with its own advantages and difficulties. The 2004 film Autism Is a World uses the writings of Sue Rubin, a non-verbal woman with autism who holds a degree in Latin American History from Whittier College to reveal the inner workings of Rubin’s mind and her struggles to modify her behavior in order to be seen as intelligent and worthy by the neurotypical population. In 2006 Ari Ne’eman, an autism rights activist with a diagnosis of Asperger syndrome, co-founded the Autism Self-Advocacy Network. ASAN’s motto is “Nothing About Us, Without Us!” and their mission is “to empower Autistic people across the world to take control of our own lives and the future of our common community, and to seek to organize the Autistic community to ensure our voices are heard in the national conversation about us.” In 2009, President Obama appointed him to the National Council on Disability.
Among the most eloquent of these self-advocates is Amelia Baggs, whose “In My Language” has over one million views on YouTube. For the first three minutes of the video, Amelia stims, humming at various pitches, hand-flapping, rubbing her knuckles against a dresser knob, and running her hands through water. The next five minutes—titled “A Translation” —offer an explanation for neurotypical viewers:
Far from being purposeless, the way that I move is an ongoing response to what is around me. Ironically, the way that I move when responding to everything around me is described as “being in a world of my own.” Whereas if I interact with a much more limited set of responses and only react to a much more limited part of my surroundings, people claim that I am “opening up to true interaction with the world.” They judge my existence, awareness, and personhood on which of a tiny and limited part of the world I appear to be reacting to. The way I naturally think and respond to things looks and feels so different from standard concepts or even visualization that some people do not consider it thought at all.
Whenever I watch this video, I begin to lose sense of my own being-in-the-world the same way I did at the Foundation. Reading a book instead of sniffing it, knocking on a door before opening it, ignoring extraneous noise when I’m trying to speak—the little rituals I perform no longer seem to be the straightforward reflections of a shared reality I once took them for.
Indeed, autism may be a disorder of empathetic hypersensitivity, empathy so great that it overwhelms the nervous system. A Daily Beast article quotes users on Wrong Planet, an online community for people on the autism spectrum: “If someone else is upset, I am upset. There are times during school when other people were misbehaving, and if the teacher scolded them, I felt like they were scolding me.” Another user writes: “I am clueless when it comes to reading social cues, but I am very empathetic. I can walk into a room and feel what everyone is feeling, and I think this is actually quite common in Aspergers/autism. The problem is that it all comes in faster than I can process it.” These testimonies contextualize the behavior of certain Foundation members who punched, kicked, and bit their own skin in fits of anxiety over another member’s time out.
The truth may be that individuals with ASD are high-functioning inhabitants of a planet designed for blunt and artless “subsensors.” The notion of autism as a disability qua disability begins to fall apart. In the documentary Neurotypical, a man with ASD shakes his head when asked if he’d like to live without autism: “I look at neurotypical life and I’m sorry, but I don’t really want to be one of you. I’m not particularly impressed that it is a better way of life.”
What would a world designed by and for individuals with ASD look like? Given better surroundings, perhaps neuroatypicals would flourish and neurotypicals would be at a loss to make themselves understood. But the world remains as it is, and because of this, having autism sets one up for a life that is different and in many ways more difficult than a life without it. “Autism has locked me inside a body I can’t control,” Carly Fleischmann writes. Sue Rubin spends much of Autism Is a World searching for a cure, bemoaning the “killer autism behaviors” of her childhood, and worrying whether her self-soothing routines—such as holding spoons and watching running water—will make other students at Whittier think she’s mentally deficient. Without his mother’s Rapid Prompting Method, Tito Mukhopadhyay confesses, “I would have been a vegetable.”
Without experiencing autism myself, I cannot predict the extent to which simply having the disorder would be more painful than coping with the ramifications of having it in a neurotypical world, nor can I know what it is like to be Carly, Sue, or Tito, and how their experiences may differ from those of Ari and Amelia. But I do feel confident saying that neurotypicals’ limiting, condescending, and at times even abusive treatment of individuals with ASD goes a long way toward contributing pain and stigma to the assertion of an autistic identity.
So how can we make living with autism more bearable while expanding our notions of what it means to have a functional and emotive mind? The two aren’t mutually exclusive. As with many issues of identity politics and inclusion, the dominant culture is being called upon to expand its notion of “acceptable.” In a neurodiverse world, neurotypicals will have to surrender to the metaphysical uncertainty of having their concepts challenged, which might lead to the dismantling of neurotypicality altogether. But there are worse things than a reupholstering of one’s deeply held beliefs. As Tito Mukhopadhyay suggests in his poem “Misfit,” neurotypicals may actually be the ones holding themselves back:
There was the earth, turning and turning.
The stars receded, as if
Finding no wrong with anything.
Birds flew by all morning—
The sky lit
From the earth's turning and turning.
My hands, as usual, were flapping.
The birds knew I was Autistic;
They found no wrong with anything.
Men and women stared at my nodding;
They labeled me a Misfit
(A Misfit turning and turning).
And then I was the wind, blowing.
Did anyone see my trick?
I found no wrong with anything.
Somewhere a wish was rising,
Perhaps from between my laughing lips.
Why stop turning and turning
When right can be found with everything?
Here was something else that set me apart from that lithe-figured girl at thirteen: I thought I could catch other people’s diseases. I couldn’t read about someone’s battle with cancer without feeling a tingling panic in my legs, bilious sludge at the back of my throat. Now it’s happening for real. When the West Nile Virus outbreak found its way to Illinois, we watched footage on the evening news of a swollen-faced woman writhing in a hospital bed, her son and husband in tears next to her. She had encephalitis, apparently, and an unabating fever; all this because of a mosquito bite. My mother told me I’d be wearing cargo pants and two layers of bug spray to the farm the next day. I didn’t sleep that night. My head was already hot and soupy from the encephalitic fever I was developing. It happened again on a trip to Wisconsin, when I temporarily lost the use of my left leg because I was convinced I was suffering the same degenerative nerve damage that plagued my uncle. And again when I grimly understood I’d probably ingested the same virus-infected beef that had been killing all those Mad Cow victims in Britain. My muscles tensed, my stomach contracted. I awaited the inevitable.
Sitting in the washroom at the farm, my head throbbed as though it was I, and not Patient Zero, whose skull had almost cracked. I had been on the floor for an hour, maybe longer. The awful tingling had returned in my legs, and I’d folded them on top of each other in an attempt to prevent feeling it. I was no longer crying: I stared straight ahead, absently cracking my knuckles, trying to think of anything other than what I had just witnessed. I found myself thinking about Shirley’s obsession with canning and Ms. Laurel’s deadbeat husband. I thought about Renee pulling her hair back in a purple scrunchie and smacking her gum, which was always her last piece in case anyone ever asked for some. I thought of Devin sketching the Gorillaz as zombie versions of themselves. I thought of Cody carrying the gourds. I thought of the gourds. Patient Zero throwing the gourd.
Then Cody was standing above me, tall and awkward, arms rigid at his sides. I could tell standing still was taking every ounce of his energy.
“It’s fine,” I said, and he loosened and began shaking and articulating his fingers in a series of pressure-releasing mini tics. I wondered what normal seventh graders were doing just then. Algebra, probably. Or gym.
“Did you see what happened?” he asked.
I looked at him coldly.
“What? Why are you looking at me like that? I wasn’t there.”
“Yeah, I saw what happened, I said.
He nodded and looked away. I expected him to be more disturbed than he was. He continued to move his fingers. I realized he had the same haircut and massive ears as a kid I knew from a TV show, and I tried to remember what the show was called but my memory would only allow me to travel so far from the farmhouse, the gravel path, before I was rerouted back to images of Patient Zero.
“They’re still here,” he said.
“Aren’t you gonna come out?”
I shook my head.
“Well, they’re probably gonna leave soon. Ms. Laurel sent me to find you.”
“Tell her I’m staying here.”
“I was looking for you for like half an hour, basically.”
“Just tell her I’m staying here.”
He sighed and left. The room was densely quiet in his absence. I watched golden hay particulates float through the air. I tried counting them, lost track, tried counting them again, lost track.
Then there was the sound of shoes crunching gravel, warm chatter dangerously close to the leftmost window of the washroom. I went flush with embarrassment. They had probably come to find me and ask what I’d done to Patient Zero. I began imagining ways I could explain the scenario to them, to my parents, but could think of none. The footsteps and chatter continued, then dimmed. I scrambled to look out the window.
There was the school group, Shirley, Ms. Laurel, my classmates. They were all walking toward the farmhouse from the direction of the bean field. Some of the kids held dirty snap peas in their hands. One of the aides was kneeling in front of a kid trying to show her the inside of a peapod. Luz was at the back of the line, her arm around Patient Zero’s shoulders. Patient Zero himself walked next to her, thoughtfully surveying the others kids’ enthusiasm. His head was wrapped in gauze from Shirley’s first aid kit. Luz whispered something to him and he skipped ahead of her happily. I watched as the group made its way down the hill to the bus parked in front of the farmhouse. I watched the kids board and watched the bus drive away, feeling an unbridgeable distance between myself and the rest of the world.
Baker, Jeffrey P., M.D., Ph.D. “Autism at 70 – Redrawing the Boundaries” New England Journal of Medicine 2013; 369:1089-1091 September 19, 2013 DOI: 10.1056/NEJMp1306380
Fleishmann, Carly and Arthur Fleischmann. Carly’s Voice: Breaking Through Autism. Touchstone: 2012.
Kanner, Leo. “Pathology: Autistic Disturbances of Affective Contact.” Nerv Child 2: 217-50
Kluger, Jeffrey. “Jenny McCarthy on Autism and Vaccines.” Time, April 2009.
Shire, Emily. “Autism Speaks, But Should Everyone Listen?” The Daily Beast, June 13, 2014.
Shorter, Edward. A Historical Dictionary of Psychiatry. Oxford University Press, 2005.
Wright, Jessica. “An overdue query in autism science: What, exactly, is autism?” Spectrum, November 30, 2015.
All images appear courtesy Drawing Autism, edited by Jill Mullin, Akashic Books.
Enter your email address to receive notifications for author Rebekah Frumkin
Confirmation link sent to your email to add you to notification list for author Rebekah Frumkin
More by this author
“We were confident we’d wake up into a business-as-usual capitalist democracy.”
More in this series
The language of depression can be curiously maritime. It comes in waves; it drowns us; it’s the Mariner’s albatross around our necks.