ATLANTA — Tall, dark and classically handsome, Payam sits at his kitchen countertop, steadily typing answers to my questions. Using only one finger, he taps each letter on the keyboard with purpose, his words flowing smoothly onto the screen in front of him. “My world was wildly unsafe. I lived in silent, suffocating fear,” he tells me. “Imagine not being heard ever. Wouldn’t you be terrified too?” Next to Payam sits his communication partner, Roxy Sewell. It’s her job to hold the keyboard steady at eye level, while creating a calm, safe space that allows Payam to focus on spelling his truth, letter by letter. “Figuring out that I may be trapped in silence forever occurred to me around the age of nine,” Payam wrote in 2018. “Tears would sometimes pour like rain on a river. The thought of never expressing my wonderful, deep inner thoughts scared me tremendously. Would my parents see the real me? “The truth is, I never gave up on the idea that there would be a time for others to find out I was trapped inside an unruly body with a lousy mouth that disobeyed.” Diagnosed with autism by age 3, Payam is among the one-third of autistic people who do not have reliable speech. Often viewed as intellectually inferior or even brain damaged by both society and caregivers, these children can spend decades being drilled with flash cards on colours, ABCs and how to count to 10 — if they receive any assistance at all. “In my experience, it is taught that autistics are unable to really understand much of anything,” Payam explained. “I wish educators would hear the grief and pain as their lessons slowly convince each vibrant child that they do not exist or belong.” ‘Differences are our collective beauty marks’ Payam absorbed the world around him but could not voice his thoughts. Just like his unpredictable body, his mouth refused to cooperate with his brain. “It’s a motor planning disorder. I’m telling my mouth what to do, but it has a mind of its own, and it doesn’t necessarily obey what I want,” said Karen Chenausky, director of the Speech in Autism and Neurodevelopmental Disorders Lab at Mass General Brigham University of Health Professions in Boston. Thousands of hours of expensive expert interventions for Payam failed to open a path to communication. Then, at 14, he was introduced to the Rapid Prompting Method, or RPM, which at its essence teaches minimal speakers how to spell their thoughts using alphabet boards. In 2018, just two years after learning to spell, Payam delivered a message on autistic rights to 250 people at the Georgia Institute of Technology. In 2019, he presented a keynote speech on empathy for an autism symposium in Perth, Australia, and spoke about autistic rights at the United Nations for World Autism Awareness Day. “Try to imagine what life would be like living without direct control over words, limbs and motor actions, this way of living is all I know,” he told the assembly. “But nothing is worse than being perceived as less capable than you truly are. My friends and I have dealt with this lack of honest understanding most of our lives.” Today, at age 24, Payam has just published his first book, “Joy and the Moon,” a collection of fables on neurodivergence and the beauty of a silent world. Payam dedicated the book to “all the humans who are misunderstood” and to his mother, Parisa Khosravi, “who never stopped listening for my depth.” In the author’s note, he said the book was for everyone. “Differences are our collective beauty marks,” he wrote. “You do not need to be autistic for these stories to resonate; you just have to be willing to be brave enough to allow your perceived limitations to lead the way. And so, you begin.” ‘We tried everything’ Payam was a bubbly, active baby who loved to cuddle. Yet when his endearing babble failed to turn into words by age 2, and then he began disengaging from the world, Payam’s worried family reached out to developmental experts. “It was such an out-of-body experience when I heard the diagnosis,” said Parisa, who was then CNN’s senior vice-president of international news gathering. “There was no time to grieve. Every day counts. Early intervention is key. “I went into full journalist mode and started looking for answers,” she told the audience in a TEDx talk. “We tried everything. I mean everything. At times, I had 20 to 30 different therapists and teachers come to our house every week.” Traditional occupational, speech and physical therapies for Payam were combined with less conventional treatments such as aqua and music therapy and working with horses. Additional interventions targeted vision, hearing and proprioception — the sense of the body’s position in space. These approaches focus on reducing sensory sensitivity, which can make light, sound and touch overwhelming for a child with autism. “A lot of non-speakers also have visual challenges because their peripheral vision is so much stronger than their focal vision,” Parisa said. “The muscles are not properly connected and converged, which makes it easier for them to see us from the periphery rather than looking at us directly.” A coach worked with Payam most days of the week, teaching him how to ride a bike, do yoga, swim and play tennis, basketball and football. “By doing these exercises over and over again, like an athlete, it gave him the confidence that he could take control of his body as much as possible,” Parisa said. “I think it’s been the best thing I did.” Academics were another story. For Payam, the rote flash card drills often prescribed for nonverbal autistic children were a repetitive torture. “The challenge was that outsiders could not see or measure the intelligence I was acquiring,” Payam explained. “For years, I underwent various types of treatments and therapies. This was frustrating at times, but without a real way to express my opinions, I faced treatments with bravery.” Regulating an unruly body In her search for answers, Parisa discovered the Rapid Prompting Method, developed in India by a mother, Soma Mukhopadhyay, to teach her nonspeaking autistic son Tito how to communicate by spelling. Tito now writes, uses a keyboard without assistance and even speaks some words. Soma brought the method to the United States in 2001. Today, there are offshoots — Spelling to Communicate (S2C) and Spellers. All are based on the belief that a child with autism can learn to communicate if a teacher presumes they are competent, teaches interesting, age-appropriate concepts, and helps the child build motor memory for pointing to specific letters. “When someone is treating these children with respect, giving them new information and teaching them fascinating things, they are often eager to perform and do their best to spell,” said Jess Sibley, an occupational therapist who was Payam’s first spelling partner. The intense effort it takes for an autistic child to control their rebellious arms, hands and fingers in order to touch a specific letter on an alphabet or keyboard is exhausting. Children can quickly lose focus. That’s where regulation comes into play. When repetitive behaviours steal the child’s attention, the communication and regulation partner, or CRP, breaks the conversation, redirecting the student to the task at hand. “Trying to stay focused is an endless game of resisting my urge to do repetitive and thoughtless movements,” Payam explained. “It takes a special and trained person to help me overcome these obstacles. My communication partner has to keep my busy body and drifting mind in sync at all times. When it comes to helping nonspeakers, “identifying the right tool should be a priority,” Payam said. “For me, it was learning to communicate by spelling each word on stencil boards. Each individual may require their own unique supports. Do not deny anyone this right, regardless of what your opinion may be.” ‘I hear no lies’ Spelling techniques are controversial. In a method popular in the 1990s known as “facilitated communication,” or FC, teachers held a child’s arm, wrist or hand during spelling. Studies on FC published until 2014 found that when the child was quizzed without being touched, they could not always repeat their performance. Facilitated communication is still used today. Major autism associations cite those older studies and maintain there is no verifiable evidence that any method of spelling is effective. Critics say any apparent gains in communication reflect facilitators’ unconscious cues, comparing their use of the alphabet board to a Ouija board. Many newer spelling approaches, including S2C, Spellers and the RPM that was used to train Payam, avoid those methods. Recent studies show that minimal speakers can learn to spell. Scientists using eye tracking technology found spellers look at letters before typing them — even if it’s from the periphery of their eyesight. A Cornell University study found that spellers were accurate even when researchers observed no direct gaze at the letter board. Investigators are also using neuroimaging to map what is happening in the brain of minimal speakers during communication, while others are exploring augmented reality tools that can facilitate independent typing. When I spoke with Payam, I watched closely as he settled in a chair next to Roxy. She held the keyboard still, without moving, as Payam typed decisively, his words appearing on the screen in front of him. I saw no sign of manipulation. Payam’s signature sense of humor would be hard to fake. When I told him I planned to describe him in my story as “tall, dark and classically handsome,” he typed: “I hear no lies.” Breaking into laughter, I thought, “How could someone else craft that response for him?” ‘I couldn’t believe my eyes’ Ever the skeptical journalist, Parisa was initially wary of attempting to use spelling as a solution for her child. “As I looked into it, I got concerned because the experts were saying that this method is not legitimate; that it’s really not the kids who are writing — rather it’s their teachers moving the board and spelling for them,” Parisa said. When other mothers kept telling her about the success they had with their children, however, Parisa decided to book an appointment with a leading professional to see for herself. “From the very first session, Payam started showing us he understood and comprehended everything that she was reading to him and started answering questions related to the lesson on the alphabet board. I couldn’t believe my eyes.” Parisa watched each weekly session in disbelief. Yet her 14-year-old excelled in answering questions on every topic, “ranging from 3D printers to how the brain works to Gandhi’s philosophy and aurora lights.” She could see no sign that the communication partner was manipulating his words. Finally, on the eighth session, she believed. “It was about geysers at Yellowstone,” Parisa said. “At the end of the lesson, the teacher asked him to write about what makes him erupt. This is what Payam wrote: ‘Centuries of discrimination have created geysers of hate and intolerance. These acts erupt and hurt the children of the world needlessly. Teaching acceptance is my life’s work.’ “Later on that night, I sat down with him, and I apologized to him for all the frustrations he must have felt throughout the years, and also my own recent skepticism. He listened to me quietly, and then just moved over and gave me a kiss on the cheek.” ‘Anxiety, my dark friend’ Payam learned quickly, galvanized by his new-found ability to communicate. Soon he began sharing his inner life with the maturity of a master storyteller. “Anxiety, my dark friend that lurks into the crevices of my life, I see you, and I step into you,” Payam wrote in a poem about how anxiety impacts his body. “Anxiety, you startle those around me when my body animates your presence. I embrace you, as I learn to dance with you.” For the neurodivergent, anxiety may contribute to “stimming” — self-stimulating behaviour such as rocking, pacing, hand flapping and rhythmic tapping. According to Payam and others with autism, such repetitive behaviours can also be reliable coping methods and should not be arbitrarily rejected or controlled by neurotypical people. “Anxiety often drives my self-stimulatory behaviours, and to disrupt those patterns would compound anxiety even further,” Payam explained. “We all use specific patterns to calm ourselves down, so it is important to work with your child to identify which of their stims they need and which they hope to reduce or eliminate.” Science doesn’t yet understand why many people with autism rely on repetitive movements — research into the area is “in its infancy,” said Dr. Stewart Mostofsky, the director of the Center for Neurodevelopmental and Imaging Research at Kennedy Krieger Institute in Baltimore. “What I do know is that some minimal speakers, after years of struggle, are able to demonstrate capacities through assisted communication approaches such as spelling that are just remarkable,” said Mostofsky, who is developing unique neurological techniques to scan the brains of minimal speakers. ‘Joy and the Moon’ Overcoming his anxiety was a key challenge for Payam as he progressed in spelling, soon moving from simple alphabet boards to a keyboard synced with an iPad. During one particularly difficult afternoon when he was 18, Payam’s communication partner Roxy asked him to describe his feelings of unease. Words flowed quickly as Payam created a fictional world in which the hero, named Joy, successfully battled the titan Anxiety, who “spoke only in loud screams and howls.” At the beginning of Joy’s journey the sun is overtaken by darkness, and Joy “saw himself as weak and incapable. Doubt began to spread through his body. And then he saw it: the Beast of Illusion.” Joy’s final challenge was facing the Gate of Fear, which held all of Joy’s past mistakes: “It flooded his eyes with moments of shame and embarrassment. This caused Joy great pain. His body lost control, and Joy began to hit himself. He screamed and screamed and screamed, only his screams were silent, so nobody heard them.” Joy is able to defeat Anxiety with the help of Hope, depicted as a bird, and the Moon, a “silent sorceress” who tells Joy, “I love you, dear one. It’s all going to be okay.” At the end of the fable, Payam wrote: “This journey is one we all take. It is a journey that asks us to step into ourselves in order to defeat our shadows. The joy does not lie in our ability to smile through it all, but rather in our willingness to walk forward.” Both Parisa and Roxy were stunned. “It was beautiful to witness,” Roxy said. “Payam is unique in the way he puts words together and uses metaphors — I don’t know anyone else who communicates that way. And after he finished ‘Joy and the Moon,’ he told me he wanted to write a prequel, and then an ending. All in all he wrote four fables for the book, all unbelievably powerful.” Watching Payam thrive has been life-changing for Parisa and her family. “Payam actually means ‘message’ in Farsi, in Persian,” Parisa said. “He is my heavenly message. He has been my ultimate teacher in life, teaching me to be present, patient, non-judgmental and understanding. “I chose journalism as a career, which is all about shedding light, amplifying voices, and making sure people are heard,” she said. “This life with Payam is literally that. It’s giving a voice to a voiceless community that’s judged, marginalized and misunderstood. I believe Payam is mastering the art of communication without speaking.” Payam is busy writing his second book, which he says will focus on the “complexities of souls and how they intertwine” from his perspective as a nonspeaker. It’s sure to rattle society’s assumptions about autism. “Challenging perceptions will be my life’s work,” Payam wrote. “I still have moments when I’m tired of having to deal with the nonsense my body gets wrapped up in. Tireless days are spent growing against impulses that exhaust me and my loved ones, yet I persevere. “I hope to bring light to dark spaces — to share my world in a way that promotes connection and understanding.” By Sandee LaMotte, CNN
