Breathing Underwater: An Autism Tale
The Rapid Prompting Method of communicating with patients is unproven, controversial and, in Alex’s family, a haven.
Anthony D’Erasmo found his son Alex on the couch, sitting still with the television on. He had old cartoons playing, the volume down to zero. From an iPad on the arm of the couch came the sound of this morning’s news report. Every day, a few hours after BBC America aired, Alex called up the segments on YouTube and listened. Widespread protests at John F. Kennedy International Airport last night, in response to President Trump’s sudden executive order, which effectively bans — Alex jumped when he saw his father in the doorway. He screamed, louder than usual.
“BETTER PUT IT IN YOUR NOTEBOOK! PUT IT IN YOUR … note …”
It was a line that he’d heard on Blue’s Clues when he was young. He repeated it when he became too stressed to stay quiet, as a kind of vocal placeholder. Like an infant’s cry, it might represent a range of feelings — hunger, arousal, misery, elation. Most autistic children pick two or three phrases off television or the radio and change them through their lives. Alex had been using this one for ten years, since he was seven. Fitting, his father thought. All the hours that he’s spent watching foreign dispatches and news reports, and he sticks with something from a children’s show.
“Come on, Alex,” Anthony said. “We’re going to see Brittney now. Mommy’s going to meet us there.”
Alex kept staring.
“We’re going to do RPM, Alex. We’re going to talk.”
Without a word, Alex flicked the off switch on his iPad and closed the leather cover around it. He carried it through the room gently, like a natural extension of his right arm, and jogged past his father in the doorway.
Anthony found his jacket draped over the back of a chair in the kitchen. On the table were five flat plastic rectangles, each with the letters of the alphabet written in order on the front — letter-boards, alphabet boards, he’d never come across a set name for them. Some were black with white letters, others orange or blue. One board, Alex’s favorite, was blue with shapes of the letters cut out and a YES/NO option on the bottom right.
Over the past few months, Alex had been learning to communicate by using the boards with therapists who’d been trained in something called the Rapid Prompting Method. Rather than speak to people, Alex would point to the letters and spell out words, then string them together into sentences with the help of a therapist. It was a unique way of communicating with non-verbal autistic people, but unproven by hard science or any objective tests. A woman from India, Soma Mukhopadhyay, had developed it as a way to speak to her son Tito, whom doctors had told her couldn’t think or communicate on his own. “Just keep him comfortable,” they had told her. “He’ll need the help of an institution soon.”
Mukhopadhyay, trained in biology and neuroscience, took a different approach. She gave Tito lessons every morning, teaching him the letters of the alphabet and how they could be arranged to form words. She designed a plastic board, on which all twenty-six letters of the English alphabet were printed, and had Tito point to the letters that she named. This instilled a kind of muscle memory in her son, creating, by her reasoning, solid neural pathways for each letter that could be recalled at will to express thoughts.
Eventually, she would report, Tito began forming his own sentences. He wrote lines of what seemed like poetry, describing landscapes and his troubled states of mind. Soon news of him spread: He published a book of poems, then another of essays on autism and the method his mother had devised. Two wealthy parents, whose son exhibited similar symptoms, paid for Mukhopadhyay to come to the United States and teach the method to their child. Within months, they said, their son was tapping out full sentences.
There was a mini-documentary about the method on NBC Nightly News and a few features in local papers. Mukhopadhyay was given a grant at the Cure Autism Now foundation. This was during the early 1990s, when a wave similar therapies was becoming popular. There were special keyboards, trackpads, even a scanner that tracked retinal movements. All of them, RPM included, involved the intervention of a therapist or parent. Without someone guiding the autistic child’s arm or leading the therapy, it couldn’t be done.
Cognitive scientists and psychologists were quick to descend upon them all, conducting double-blind studies and writing papers in stark opposition. The slew of techniques came to be labelled “Facilitated Communication,” or FC, maligned widely in scientific literature and the press. Syracuse University, which had just recently accepted a $1.1 million grant to study the techniques, closed the department and fired all its faculty within two years. The brand of therapy now survives as a loosely connected series of separate treatments and methods, discussed in Facebook groups and message boards. There are meetings in nondescript buildings, arranged a few months in advance and monitored closely by Helping Autistic Children Through Leaning and Outreach, or HALO, the company that Mukhopadhyay founded in Texas. Every few months, she’ll attend the meeting and perform demonstrations. No one but prospective families are permitted to attend; everyone present must sign in at the door.
Alex could — with his therapists — conduct freeform conversations on politics, war, and television. He’d type for minutes without stopping, composing long, grammatical sentences, talking about what it felt like to have autism and why he found it so hard to communicate. But he wouldn’t do it at home. Anthony could ask his son what he’d like to have for dinner. He’d tap out “N-O-O-D-L-E-S” with his finger. Sometimes he could indicate YES or NO in response to direct questions.
Anthony had spent several thousand dollars to fly down to Texas, where Mukhopadhyay operates a kind of training facility. He’d taken classes designed to teach him how to stimulate the correct muscles in his son’s arm and approach him with questions the correct way — some mix of confidence and deference that he thought he’d mastered by the session’s end. The classes had gone well, but he couldn’t get from his son what the therapists could. Alex screamed or left the room when he tried.
Now Anthony ran one hand over the board on the kitchen table and pulled up the zipper on his jacket with the other. Alex came down the stairs at a jog. His footsteps shook pictures on the walls.
“You sure you don’t wanna try to do this here tonight, buddy? We could sit at the kitchen table and talk instead.”
Alex looked at his father’s hand on the table, but he didn’t stop walking. He was out the door on his way to the car before Anthony could finish.
During her training in Texas, Brittney had been taught to keep the session rooms as bare as possible. There should be no distractions, no colored objects on the table for the students to grab. She’d studied at HALO for a year and eight months, moving to Texas for weeks at a time to log the requisite hours. Soma Mukhopadhyay had worked with her personally.
Only when her training was complete could she call herself a “provider,” someone licensed to perform the method with non-verbal people. She conducted half-hour therapy sessions in a back room of her house, which she had hollowed out for the purpose. There was a long brown couch that hugged the corner and two folding chairs by the door.
Alex sat at a wooden table with the letter-boards in front of him. Brittney stood beside him with a pencil and three blank sheets of paper. There was a flat-screen television on the wall beside them. Brittney had covered it with a green beach towel before the appointment.
“Alright Alex,” Brittney said. “Would you like to do a lesson today? Like we did last week? Or would you like to just talk? Either one is fine with me.”
Anthony leaned forward on the corner couch. Nancy, his wife and Alex’s mom, sat near the door holding a yellow legal pad. All week she’d been thinking of questions for Alex and writing them down. She knew from experience that there would only be time for one or two.
Alex could be slow while he tapped out his responses, and Brittney, as a matter of policy, wouldn’t help him along or finish his sentences, even when intended word became clear to everyone. She allowed herself to interfere only when Alex dropped his shoulder — signaling a disassociation from the activity — and let his tapping hand wander downward. When that happened, Brittney grabbed him by the wrist with two fingers and her thumb, then threw his arm up, the way you’d flick a slip of paper into the trash. The brevity of the contact seemed to reassure parents and observers.
Alex held the pencil steady, and began tapping. He hit about one letter per second — about as fast as he ever goes. Brittney held the board level with his face using a cut-out handle in the corner. She told him to keep his shoulder up. “I-W-O-U-L-D-L-I-K…”
“Alright,” Brittney said. “Let me write this down. ‘I would like to talk about…’ Is that right so far?”
Alex tapped out yes. Anthony and Nancy were silent. The box of tissues that Brittney had put out before they arrived had gone untouched. They’d begun these thirty-minute sessions eight months earlier, and Anthony had cried through them all. Alex would tap out his letters, go through his lessons, and Anthony would take tissues from the little blue box by the handful, wiping his eyes and watching his son reveal himself to the room, appearing as if from nowhere. On the videotapes — he’s recorded each of Alex’s seventeen sessions with Brittney — sniffling is audible in the background, punctuated by gasps and light whispers of encouragement.
Anthony and Nancy paid $200 for each session. It felt like nothing, considering what they get back. They’d pay $500 if they had to. $1,000. $5,000. Wouldn’t matter. Anthony wanted to keep going until they could wean Alex off the half-hour sessions, until he and his son could do it at home. He had plans to put a board in every room of the house. He wanted to make up for lost time, all the hours he’d spent treating his child as if he were a piece of furniture. When Alex was young, they’d talk about him as if he weren’t in the room at all.
Alex told Brittney that he’d like to talk about Donald Trump’s immigration ban. She agreed, and put up the board. “I am sad that we cannot treat all the religions the same,” he said, tapping the letters out with an unsharpened pencil. Brittney only interfered once, gripping the wrist and letting it go. More sentences on the ban followed, till the screen on Brittney’s iPhone — their timer for every session — read 21:34. Nine minutes left.
“Do you want to keep going with this?” Brittney asked him. “Or do you think we could take some questions?” Alex leaned his head on the wall, but his arm stayed up.
“I am ready to be interrogated,” he tapped.
Everyone laughed. Nancy flipped a page over on her legal pad and looked for the right question. There was a trail of scratch outs and sentence fragments down the page, one small paragraph in purple ink toward the bottom. She put a bitten fingernail on its final line and read aloud”: “If you could do one thing — just anything at all in the world — I know it’s hard, but what would you want to do honey? Daddy and I will take you anywhere. Trips, activities, anything?” Alex began tapping, sliding into the easy, practiced rhythm that he’d had when he first sat down.
“Everything is hard for m — ”
Brittney lifted his wrist high, then let it fall. Alex caught it near the tabletop and kept tapping. He was rolling his head backward and screaming.
“Everything is hard for me?” Brittney said. She leaned in close to his ear. “Was that right?”
Nancy sighed. Anthony folded his hands and let his head fall, smiling. He was half hanging off the chair, elbows on his knees. Alex got quiet again and reached for the iPhone on the table. Anthony began to ask three separate questions from the corner, swallowing the words each time. Brittney stacked the three boards on the table, then gathered them under her arm. “I think we got a few good things in today …”
“I’ve got a question, bud,” Anthony said. “Could you get one more in?” The iPhone read 36:21, but Brittney nodded. She raised the board so it was near Alex’s face, and put the pencil back in his hand.
“Alex, I’m just wondering why you won’t do all this with me,” Anthony said. He was looking up, gaze level on a wall just past his son’s head. “I thought it was because I wasn’t trained in the beginning, and then I went and I got trained. I went to Texas and did all the stuff they taught me and I practiced. I got the rhythm of it all down. Other kids will do it with me, and you’ll still barely talk to me. Why do you talk so openly with Brittney and with John and not with me? What is it? I just want to know if there’s anything that I could be doing better so that I could talk to you in the house. Anything you need.”
“I don’t want to talk to you a — ” Alex said. After tapping the A, he dropped the pencil; Brittney picked it up and put it back in his hand.
“Start from the A,” Brittney said. She moved her hand off his wrist, held it steady by her waist. She looked over her shoulder at Anthony. Her arm sank a bit with the slight turn of her body, and the board went down with it. Alex followed the letter with his hand. He was shaking.
Brittney wrote the whole sentence on a new sheet of paper. She arranged the letters for him, added a period at the line’s end. “I don’t want to talk to you about everything,” she said. “Was that right Alex?”
“Y-E-S,” he tapped.
Anthony sank back into the couch and crossed one leg over his knee. He chuckled and reached for his jacket. His eyes were wet, and he felt everyone looking at him. “I get it, buddy,” he said. “Typical teenager, I guess.”
When the session was over, I walked out to the driveway with Anthony and Alex. Nancy stayed inside to go over money and logistics with Brittney. It was cold, just beginning to snow.
“You saw that in there, didn’t you?” Anthony said to me. “How incredible that was? I can do it, I’m telling you. I can do it with any other kids in the world — two were over at the house today. Just not with my son.”
I fingered the keys in my jacket pocket, looked over at Alex. He had climbed into the back seat of his father’s car with a kind of feral grace, handling the hundred-and-fifty-pound bulk of his body, for a few seconds, like a dancer or an athlete. He had his head up against the window, his father’s iPhone in his lap.
“Well, he’s seventeen,” I said. “No boy wants to talk to his father when he’s seventeen. I didn’t. Kids suck when they’re that age.” We both got quiet for a few seconds and let that hang in the air. The snowflakes falling around us grew thicker and multiplied. Nancy was still inside.
She and Anthony had come in separate cars at staggered times. He was spending more time out of the house than ever before, while she was at home most days with Alex. They hadn’t spoken since arriving at Brittney’s house. “He’ll get there,” I said.
I’d been following the family for a few weeks, trying to get a sense of what RPM therapy had given to them, what it had taken away. I couldn’t believe it in the beginning. There were too many studies, too many questioning scientific papers. If there were ever a situation rife for scamming and charlatans, I thought, it was this. Take desperate parents who’ve never spoken to their child and tell them you’ve got a miracle cure that only you can do, charge them a few hundred dollars for the rest of their lives. It seemed like the worst kind of abuse I could think of.
But I’d watched Alex do it, over and over again. The board didn’t move. The therapist didn’t prompt him. There was a teenage boy speaking in front of me and telling me what he thought about poetry, science, the history of American intervention in Somalia. After seventeen years spent giving the wrong impression, he’d been given a chance to tell the world who and what he was.
Anthony laughed a little, then fixed a few hairs that’d blown astray in the wind. Tears gathered at the corners of his eyes. He treated every banality and frustration that comes with raising a typical teenager as something sacred and rarefied — they were transcendent experiences for him, little moments when he could pretend he had a kid with normal problems. It was as if every joke about adolescent moodiness or messy rooms might be the last. He and Nancy seized upon them when they came. Every time they could turn something that Alex said into a joke or tease him a little about it, they did. But they always came down harder for having indulged themselves in the small fantasy, more damaged and rooted in the world than they’d been when they left it. Anthony looked past me into the night, where thick snowflakes fell.
II. Growing Up
Alex had begun beating people with his fists around the time he entered puberty. It was 2013, just before the start of the school year.
It only happened once or twice a day at the start, sometimes not at all. But no one could ever explain why. He had always expressed anger or frustration in odd ways, but never so violently. When he was younger, the outbursts were small and self-contained, little yelps and twitches of the limbs that were apt to end after a few seconds. Whoever was with him could move away or be still, then take a few breaths while he calmed himself down.
But as he grew up, what control he’d possessed over his arms, legs, and neck lessened. He began breaking down in the middle of lectures at school, then throwing his head back and screaming while he walked through the halls. It was torture to watch. When the fits began, no amount of counting or hanging back would work. Even his favorite teachers had difficulty. Some days, they could calm him down. Others, they’d have to call home and have Nancy pick him up. Punches are punches, they’d say. Doesn’t matter who throws them.
When he was home, the fits would get worse. The hours between meals that Alex used to spend in front of the television stretched into long days and nights; it was harder than ever before to know when he might erupt. When he did, it fell to Anthony to calm him down. He would try to catch Alex by the wrists first, to protect himself from a knock from a closed fist, then wrap his body around his son’s till the panic subsided. They’d usually have to stay that way, locked tight and shaking, for a few minutes before Alex calmed down. He’d scream, repeat his phrases from movies and television. Some days the noise would be harder to take than the flailing elbows and arms. Anthony would shush him slowly; Nancy would watch and whisper prayers from the next room.
For seventeen years, they had raised two children — both autistic, though their older son A.J. had a much milder form — as a team. If one of them was out, the other would stay home. They took turns trying to figure out what each one needed, and learned how to handle each one when they’d fight as children. Now, they left the kids — no longer small or easily wrangled — mostly to themselves, A.J. listening to music while Alex watched his news programs in the next room. Their house was quiet. With Anthony travelling, Nancy could hardly leave it.
She was the only person Alex wouldn’t hit. A.J. and his father had learned to keep their distance, and all the teachers who interacted with Alex at school were warned, but he had never touched Nancy in anger. The calm that came over Alex when she came near made her wonder what kind of control he really had — if she could stop it for him, why not anyone else? He’d always been told that the motions of his body were far from his control, that he couldn’t help swinging his fists the way most people can’t help blinking. Anthony began to think it was a maternal kind of love that Alex could only feel for Nancy, something innate and mysterious that could override biological impulses.
The only contact that Anthony had ever had with his son came when Alex climbed up on his lap and kissed him; he’d done it since he was a child. For a few seconds, Alex would hang there like a monkey and they’d both feel — even when Alex grew nearly to six feet and a hundred and fifty pounds — as if there was nothing out of the ordinary about it. Sometimes he could ask him a question and get a grunt in return, then pretend it wasn’t coincidence that he “responded” in time.
They’d have specialists come to the house twice a week for at-home therapy to supplement the work Alex was doing in school. The teachers would go through methods approved by scientific studies and recommended by doctors. The teacher would do a few routine drills, then record Alex’s progress on paper. They’d put three objects onto a table, for instance, and ask him which one was the cup. If he could point to the cup right away ten times in a row, he’d have “learned it” and they could move on. Most of the time, he didn’t get it. They spent hours trying to pick out cups, then a few minutes reading aloud from a storybook, to alleviate some of the frustration that had built up over the hour. When Anthony heard the lessons going on from the next room, he got the urge to go in and ask Alex, illogical as it was, whether or not he liked it.
“I just wanted to go in and ask it, like you’d ask anybody,” he said. “I’d hear them pestering him about cups and the reading stories, and I’d just want to go in and say, ‘Do you like this?’ And I really thought he’d answer for a second.”
Their lives were like that for a while — a long series of focus-grouped and doctor-approved therapies that were supposed to bolster what meager communication skills Alex had developed. Best-case scenario, they said, he’ll be able to better communicate what’s going on in his head, likely through hand gestures and small movements. Maybe he’d be able to ask for different things for dinner, or convey his fondness for certain radio and television programs without screaming. They hoped it would stop some of the fits, maybe quell whatever internal frustrations were leading to them in the first place.
After a few hundred doctor visits and second opinions, therapies, and one-on-one self-help sessions, Anthony came to realize that no one really had a firm grasp of the science of autism. No one could get close enough to study it. There were always new studies, new academic papers that he and Nancy could — that he really should — be reading. There was a YouTube video of a child who’d managed to connect through Disney movies or stuffed animals or cartoon puzzles. But it all seemed far away from Anthony, situated on the opposite end of some vast, unbridgeable canyon, out of sight and a few thousand miles removed from the small tragedies that played themselves out nightly on his living room floor. He needed a bridge, one that no medication or current method could build.
Still, Anthony scanned the chat rooms and consulted with Nancy every few weeks about new therapies and medications they should be looking out for. When something new came along, they’d try it. But it was always more of the same. Doctors and therapists all calculated success in predesigned charts and shifting numbers, though none of them really promised “success” in the first place. Most of what the approved therapies could give you was a sense of rightness — a feeling that you were doing all that you possibly could, letting your child learn and grow in his own way. They all gave you lists of little signs to look out for — subtle indications of improvement that would come over months and years. When the improvements didn’t come, they’d suggest changes in medication or diet. Anthony had thrown out more half-full bottles of fish oil pills and off-market vitamins than most people would see in a lifetime. He assumed that they would live this way until they died, collecting small remedies and stringing them along into a timeline of hope and failure.
Then came Soma Mukhopadhyay.
Nancy had seen a young boy, a non-verbal autistic like Alex, speaking with an alphabet board in a clinic in Staten Island. He was making full sentences and turning them into thoughts.
She had been working then as a life coach and a psychic medium, so seeing strange things was part of her job. The doctors who ran the clinic had brought her in to observe whether there was some trick going on — to look for movements in the board or guiding hands from the therapist. But the boy was all she noticed. He tilted his head back like Alex, had the same tenuous control of his arms that Alex did. And, so far as she could tell, he was communicating for himself.
She’d asked about the method at the front desk, and the receptionist had given her a single post-it note in return: Soma Mukhopadhyay, it read. RPM. “Expect amazing things,” she’d told her.
Nancy and Anthony searched the Internet that night, read through all the newspaper and magazine clippings they could find. They watched the YouTube videos and the nightly news features from the ’90s, then looked up the people who’d been featured on message boards and Facebook groups. It looked strange at first, not much better than the sham therapies they already knew about. But they called anyway to set up a meeting, and Alex was in a room with a therapist the next week.
After a few lessons on muscle memory and proper spelling, he was tapping out words. Nothing of his own yet, but he could respond to questions and spell out simple things. That was enough to keep them coming. For a while, it seemed like what they’d already been doing: Alex would learn lessons about the Pony Express and the rainforest, then answer comprehension questions to determine whether he’d gotten it all. There were no papers or scorecards like the other therapies, just two people in a room. Alex was good with history, a little worse with mathematics. Anthony thought of all the news that Alex sat watching for hours every day, wondered how much of it he retained.
The therapists didn’t look at Alex while they worked — the method relied on the therapist being a kind of disembodied voice that came to the kids through the ears without distraction — and they rarely touched. Nancy and Anthony thought of all the articles they’d read about people who guided the arms to the boards, or moved the boards to make certain things happen or certain words come out. They couldn’t see it here. Often, Alex would scream and yell phrases while he typed out his letters, but they’d still come out as words. Anthony taped every session, watching them with Nancy in slow motion to make sure there were no tricks. They tried three different “providers” in the same week, making sure they could all do it with the same success. The methods varied and the results were a bit different from person to person, but it was no reason to stop. They’d learned in a matter of weeks that Alex had thoughts, that he knew the alphabet, that he was probably listening for all those years that the news was on in front of him.
After two weeks of the therapy, Alex’s fits stopped. He calmed down during class, and started making it through full days without so much as a tossed fist or a twitch of his neck. His teachers began keeping a few alphabet boards around the classroom in the event that he wanted to type out a word or two. At home, Anthony could sit beside Alex and watch television without putting up his hands in defense. With Nancy, he’d actually let himself be touched. Anthony thought again of the secret intimacy there, more pronounced now for how calm Alex was.
It struck Anthony in those moments how little he really knew about either Alex or Nancy, how impossible it was to divine the thoughts inside someone else’s head. If he could only tell what his son was thinking, what his wife was feeling, whether the therapists working with his son were out to deceive him or if they really did have some method of approaching his son that he didn’t know. He feared it was impossible to know anything about his family, really, beyond the hopeful abstractions that you make in your own head. For a time, he felt he was seeing the world and the people in it through a fog, the way you see road signs through a rain-covered windshield.
There were verses from the Bible that spoke to him in church — all this “who among us has known his brother’s heart” stuff, and the sermons about faith, drawn from the book of Acts. Alex would sit beside him in the pews, and Anthony would look for some reaction on his son’s face. Most mornings, Alex would stare at the hymnals in front of him, whispering phrases to himself.
Sunday nights, before bed, Anthony would tell Alex that he loved him. Then, on his way out of the room, he would wonder how he could mean it. There’s a reason to love your mother, he thought. It’s biological. What have I got? Was it possible, he thought, to love somebody who’s never spoken to you? Who hits you when they see you? Who might not know you are there?
One night, during therapy, Brittney asked Alex if he’d like to talk about what having autism felt like. Anthony and Nancy — the only other people in the room — looked at each other; he’d never been able to get out a full sentence of his own before, and they’d never asked him an open-ended question. Anthony thought of all the self-help books and speculative essays he’d read about autism. They compared it to the absence of an editor, the unendurable streaming-in of a thousand different impressions at once. It’s like a thousand rock concerts at once; it’s like flying through the air; it’s like being out of your body or not in control of your limbs; living in a fog. He always found them hard to relate to — just fabrications of people trying to sell new books.
Alex picked up his pencil and began tapping at the board, more quickly than Nancy or Anthony had ever seen.
“Having autism is like being underwater,” he said. “It’s the feeling that you are stuck in a breathless place, and I’m so tired of living in places where I can’t breathe.”
Scientists call it mind-blindness, the absence of an empathetic imagination. Autistic children, according to a stream of science — beginning in the early ’90s with Dr. Simon Baron-Cohen, a cognitive psychologist — are not able to conceive of other people as real, thinking beings like themselves. They have thoughts and dreams; they can follow basic logic, solve complex equations, build towers out of blocks and airplanes out of paper. But they can’t connect in any meaningful way with the rest of the human race. According to Baron-Cohen, they probably don’t even know that it’s there.
He quotes an unpublished essay by Alison Gopnik, who attempts to envision through prose what the world might look like to someone who is, in scientific parlance, “mind-blind”:
At the top of my field of vision is a blurry edge of nose, in front are waving hands … Around me bags of skin are draped over chairs, and stuffed into pieces of cloth, they shift and protrude in unexpected ways. … Two dark spots near the top of them swivel restlessly back and forth. A hole beneath the spots fills with food and from it comes a stream of noises. Imagine that the noisy skin-bags suddenly moved toward you, and their noises grew loud, and you had no idea why, no way of explaining them or predicting what they would do next.
The studies suggest not that the actual mechanics and banalities of communication are the problem, but imagination. Autistic people can’t conjure things that aren’t there out of the raw material of the world. Autistic people, goes the argument, don’t avoid talking to you because they don’t like you or don’t understand you, but because they can’t tell that there is even a you in there in the first place.
There is a popular test, often presented to psychology undergraduates, that demonstrates the problem on a smaller scale. A child, seated at a table, opens a box labeled “candy” and is surprised to find pencils. A man in a white coat beside the child asks him what Jason, who is outside the room, will think is in the box when he comes in. “Pencils,” the child says.
The idea being that our ability to project our own consciousness outward onto other “bags of skin” is not possessed at birth. It is a byproduct of the electrical reactions in our brains. The ability is stronger in some people and weak in others; in rare cases — about one out of every three hundred babies born every year — it’s said not to be there at all. “These,” according to Steven Pinker in How the Mind Works, “are the people we call autistic.”
Any attempt to “stimulate left brain learning and facilitate communication,” as Soma Mukhopadhyay’s website claims to do, would seem fundamentally at odds with the accepted knowledge about autism. Her therapy proceeds under a basic assumption of humanity — that there is a mind inside every person, autistic and not, capable of understanding other people as having similar thoughts, motivations, and desires. Therapists who follow her method are taught to “presume competence to increase students’ interest, confidence, and self-esteem.” They are meant to approach the students, adhering to the method that Mukhopadhyay sets out in her book, “with sympathy,” functioning as something more than a holder of the board and stenographer for the sentences. The success of RPM therapy relies on a connection between therapist and student. They come to know the weaknesses in their students’ muscle memory, what phrases they like, what subjects to avoid. When children improve, according to Mukhopadhyay, it’s because of a growing trust between therapist and subject.
This relationship — totally subjective, not open to traditional lines of inquiry via the scientific method — is the first thing that Amy Tostanaski noticed when reviewing the method. Tostanaski has been working for years with autistic children, practicing the sort of recognition-based therapies that Alex and children like him claim to hate once they’ve been exposed to RPM. She believes in approaches that can be verified in double-blind studies, and approaches to communication that do not rely on any interpersonal relationships for success. If it works for one therapist and not another, she says, then there is a problem with the method, not the person practicing it. She and a team at Vanderbilt University have attempted to study RPM therapy using the same tests that all psychological and medical treatments undergo. But they were unable to get beyond the level of theory, given that RPM is protected by Mukhopadhyay’s nonprofit organization, Helping Autism through Learning and Outreach, or HALO. The organization denounces the scientific process as it is currently implemented, and has cut off any access to its therapies in practice.
At a loss for raw material, Tostanaski and her team listed the impediments to their research toward the end of their paper — one of the only real attempts at studying RPM in existence:
… videotaping the RPM session of one’s own child is forbidden without express written consent of HALO, and in the event that this consent is obtained, videos are only permitted to be shown to immediate family. Professionals who would like to observe an RPM session are required to pay an undisclosed observation fee. Recording presentations on RPM by Mukhopadhyay is forbidden
The study suggests nothing about the efficacy of the therapy, only that it “seems to be pseudo-science.” They compare it throughout to the thoroughly discredited Facilitated Communication, and fault its creator for her focus on the personal relationship, on which it relies heavily. “Even the most well-intentioned practitioner,” Tostanaski says, “might find it all too easy, perhaps even unknowingly, to extend their sympathy in moving the letter board to make certain that the student chooses what the facilitator thinks the student wants or intends to say.”
The language — what the facilitator “thinks” the student wants — reveals an adherence, conscious or not, to the mind-blindness paradigm. The autistic child, according to the theoretical basis for RPM, doesn’t want or intend to say anything. Without a conception of someone on the other end to listen, there really isn’t a need for speech at all.
Soma Mukhopadhyay’s demonstrations are held once every two months. Clients pay to have her flown out to whatever city they’re in — for now, there are big enough pockets of clients in Austin, LA, and New York — then gather to watch her work with their children while they take notes. There’s a waiting list of about twenty names, and only time for ten or twelve demonstrations over a weekend. Alex hadn’t made the list this time, but Nancy went to watch anyway. She took a special pleasure in seeing the mothers experience what she had, encouraging the other kids when they were done.
When they could, Nancy and Anthony would come to the meetings together. People who knew them spoke of the loving way that Anthony would look at his wife, how happy they looked just to be together. They’d give testimonials when it was time, about how they’d come to find RPM and how they’d managed to raise two autistic children in tandem. They took questions, told parents who were new to the method to call if they needed anything.
This session was held on a Saturday, in a squat building of tinted glass and concrete off the interstate in eastern Long Island. It might have been a doctor’s office or a furniture warehouse.
Two women sat at the door in folding chairs. They had been directing people to the demonstration area since nine o’clock that morning, and they’d be doing the same thing until four. I arrived with my mother around noon, wanting someone else to see it, to tell me it was fake or real.
We parked in the driveway and came through the automatic doors. The women in the chairs asked how we’d heard about RPM.
“A friend,” my mother said. “Nancy D’Erasmo?”
“Alright,” said the one on the right. “Yeah, I think she’s upstairs. Just observing?”
I thought about it, then said yes.
“Up the stairs and to the right. Go outside if you’d like to talk to your friend. We like to keep it very, very quiet in there while Soma’s doing the demonstrations.”
We agreed and entered the room. About twenty women sat at long tables in rows, eyes fixated on a flat-screen television mounted to the whiteboard in the front of the room. No one spoke. There was a woman — Soma, dressed in a brown lab jacket covered in pockets and zippers — on the screen. She was standing beside an autistic man, who was about thirty years old. She held an alphabet board in one hand, a pencil and paper in the other. They’d been at it for a few minutes. Soma read the last lines of what the man had written to the room, via the webcam that’d been set up on her side of the wall. It was a poem.
…there in the morning, when there is dew on the grass/And I see the world and it is new.
A woman near the front — with thin white hair and a walker beside her chair — put a hand over her mouth and turned to the rest of the room. There was a sheen to her eyes, small hints of a smile visible through her spread fingers.
“You like what my boy just wrote?” she said. The other mothers gasped and nodded. They gathered around her — old congregants giving warm welcome to the newly converted. There were gasps and sustained periods of laughter. A box of tissues circulated the room.
Someone said that the session was over, that Soma would be coming in for a Q&A session. Some women touched their pens to the paper in front of them; some left for lunch or coffee. There had been an all-day session yesterday, nine to four. Most of the women had come to see that one, too. Even if their children couldn’t make it, they watched everyone else’s — cheered when they wrote something nice, patted each other on the back when they threw a fit or brought the session to an end. Between the sessions they chatted, sipping tea and comparing notes.
“You can look at my son on YouTube,” said a woman who’d been beside me the whole time. She’d seen the little black notebook in my hand and given me her card. “There’s no movement, nothing. Nobody is moving that board. It’s him speaking.”
I was about to answer when Soma came through the door. The room went silent. She began taking questions. Most were technical concerns — why can’t my child do this with me; How do I know which provider is right; How do you know when to move on from a topic, when to teach a lesson, when to let the student speak freely? Others, from new mothers and prospective clients, concerned the allegations of fraudulence.
She answered them all in sequence, speaking softly with a lilting Indian accent, tinged with near-perfect doses of wit and self-deprecation. “I get bored,” she said. “I get bored of always talking with the students about the autism or doing lessons. I want to talk to them.”
The mothers laughed.
“You have to approach the child with confidence,” she said, “and that takes time.
“The training takes time too. It’s like any relationship, but so much harder.”
“When I worked with Tito at first, they told me just to ignore him. And look what he can do now.”
The room acted as a unit — every concerned parent breathed and sighed as a single thing. They believed in spite of the science and the tests. They hadn’t really come looking for explanations. What the meetings provided was a network of others — fellow travelers and sufferers in the same position. To be inside one, watching Soma go through the motions of her therapy or enthrall the crowd with long digressions on kinesthetic motions or neurobiology, was to know that there was another group of twenty or thirty somewhere in the country who would soon be doing the same thing, believing and hoping with the same illogical intensity.
“I know what you’re thinking,” one of them said toward the end. “But I’m not insane. I know it’s not supposed to work. But I’m watching it happen — it’s happening right in front of me.”
There’s a concept in twentieth-century theology, first defined by Mircea Eliade in a book called Myth and Reality, called hierophany — derived from the Greek word for “sacred” and the verb meaning “to bring to light.” It provides the basis, he writes, for all religion, and for most transcendent human experiences, and relies on a mingling of the sacred with the profane objects of everyday life. Where the two meet on earth — love and sex, God and man, intellectual energy and the raw materials to make it manifest, we find the transcendent. There is a power in belief, in taking at face value what’s in front of you. To see a child’s mind, heretofore unknown to you reveal itself through the most banal objects on earth — plastic boards, wooden tables, timers, unsharpened pencils — serves as a kind of lift out of the self, a ceremony that can be validated and amplified by the company of others. The experience of watching the children talk, then, is deepened not by a preponderance of evidence from the woman, the prophet, the expert at the front of the room. It is made sacred by the presence of others who’ve seen the same hierophantic revelation, who believe as you do despite all evidence to the contrary.
Of the few hundred children who’ve gone through RPM, Soma said, many become poets. Some of what they’ve written has been published, though most of it remains in folders like the ones Nancy and Anthony have in piles all over the kitchen. Some parents frame the work; others post it on Facebook and read it aloud to themselves when things get difficult.
V. Breathing Out
Alex’s first stories came easily, seeming to flow from his fingers like things he’d been holding in for years. There was one about a king — he lived up high on a hill, and he had a golden dog. All the villagers would want to come down and see it. There was another one about a woman who lived out in California near the sea. “She was a hoarder,” he wrote, “Because she had too many things. The things were everywhere, and she could not walk over them.”
Anthony reads them at night when he can’t sleep. Some nights, he’ll sit alone in the kitchen while the sun rises, watching Alex’s session videos on his laptop and following the written transcriptions as the recordings played. He thinks of writing things back sometimes, maybe even bringing them up while his son is turned the other way and speaking into the open air. He knows that Alex can hear. He just doesn’t know what he wants him to say.
For now, the stories are enough. They’re all that he’s got — all anyone’s got, in some sense — to explain the way the world works, to get at the truth of what drives people to love and to desperation. And whatever shadowed region of the brain that they come from — sealed off and inaccessible as it is to the functional smiling, hand-shaking adults we make ourselves into — they can probably speak better to what we are anyway.
Lately, stories are all Alex wants to write. Brittney will start a session wanting to talk about math or politics, and he’ll slip into narration halfway through his response. There are stories about airplanes, nameless characters who fall in love on street corners in Las Vegas, even a boy who seems a lot like Alex who finds a magic necklace. They’re told in winding sentences, mostly free of punctuation, and heavy with old fairy-tale diction.
For now, the stories and words are what connect Alex to his parents. He’ll talk directly to Nancy, and even spell out full words for her while they’re sitting together on the couch. She’s got meetings lined up over the next few months to bring the method to her school district.
There have been nights that Nancy and Anthony stay up all night together, sitting at the kitchen table to prepare presentations and speeches for school board meetings. They’ve fallen into a rhythm, finishing each other’s thoughts and paragraphs to be sure that their story would come across the right way. Last year, the family took a vacation together for the first time since Alex was born, staying in a friend’s beach house on Block Island. They spent days walking over trails in the woods, biking on the roads, sitting on towels near the shore.
Alex had spent most of that time sitting cross-legged on the beach, tunneling his fists into the sand and shaping it into little hills at his knees. He’d never gone into the ocean on his own. On the morning that they were meant to leave, he walked down to the edge of the water while Nancy and Anthony were talking and stood there, knee-deep and totally still. Nancy noticed, and tapped Anthony on the shoulder. They calculated the distance between them in steps, ready to run and grab him if he had an outburst. But he was still. The water was cold, the waves small and crestless. Seagulls gathered on the surface of the water nearby; an early ferry moved slowly away from the shore, growing smaller as it went. Alex dove in, splashing through the waves without a sound.
When they give presentations to school districts, Nancy and Anthony mention the image, though they didn’t manage to catch it on camera — their son, who’d flail himself around like an animal a few years ago, swimming through the sea. They read out his description of autism, how it’s like being underwater, “in a breathless place,” then show videos of him writing his stories and poems at a table, talking about politics and history with his plastic board and dull pencil. They say that it isn’t just him. A lot of the time it can feel like the whole family is underwater. Rarely do they try to explain or say much more. They don’t complain or look for praise. They don’t try to make converts out of people.
They don’t talk about the pain or the hardships that attend a life lived under such stress, how it won’t help you to hold your breath or locate the land. They don’t mention what it takes to get through the days — the slow, shallow breaths you need to take when the pressure begins building, the anguish you feel when the water first fills your lungs. They don’t say that the real trick to living in a breathless place, long after all hope appears to have floated off and pity seems all you’ve got left, is shutting your eyes tight to the world, and believing you can breathe anyway.
The school’s principal has seen Alex work; all his teachers have given testimonials about his improvements. They’ve shared his stories over conference tables and small student desks during meetings with other parents. Nancy and Anthony have begun working together with other non-verbal children, teaching them to tap out letters and communicate. Within a few years, they’re hoping to have alphabet boards and trained therapists in all special-needs classrooms throughout the district. Alex is working on a short essay to have the method better understood.
So far, as an opening, he’s got this: “I do not want people to think that autistic people are not there just because we have bodies that betray us.”