Philly Story Swap

Julia Chiou

On January 15, 2022 I was barely awake for a half an hour when gravity turned on me. My organs felt distorted, like they were walking through a funhouse, and I collapsed on the floor of my apartment, clinging to the fibers of the carpet as the room spun in a sickening orbit. I immediately knew this was vertigo—I had been dealing with an ear infection for weeks—but it felt so real. How was the Earth’s gravity not literally tossing me around and how was Scott, my husband, not feeling this?  When he came to pick me up and transport me to the bed, I clasped onto him as if he were the mast of a ship in a terrorizing storm. When we landed, I laid in bed, seasick even in stillness and unable to open my eyes. 

As I began to recover over the next few weeks, I learned my vertigo was caused by the infection reaching the tiny ear organs that control balance, making me unable to accurately sense gravity or where my body was in space. When I did start to regain some mobility, I was clumsy. My walk was a hobble and I found myself grabbing the items next to the ones I had aimed for in the grocery store. For weeks I didn’t dare pick up a knife to make dinner or get behind the wheel of a car. During this state of unsteadiness, my husband made a passing observation, “Your movements look like Sam’s.”

Samuel Chiou is my autistic brother. As a baby he was flimsy. He had trouble holding himself up, his lanky limbs flopped, and his head bobbled. When he did begin to walk at the age of three, it was, and still is, an unbalanced totter. He seemed to always prefer to lie down or ride in the wheelchair. His hands were unreliable; he was always shaking or clapping them and grabbing things he shouldn’t. He couldn’t use his hands to feed himself, dress himself, or do anything that required dexterity. Even now at the age of 23, he has never spoken a word that I have understood.

As a teenager, as soon as I got my driver’s license, I made sure to take Sam out with me as often as I could. I thought about how it must have been for Sam to not be able to elect to go anywhere, so the places where I elected to go, I would take him with me. We went on drives together all the time. He would sit in the back of my CR-V as I drove up and down the coast of our hometown in southern California, windows down, listening to Switchfoot, my favorite band. I wondered if he liked the music I played. 

At that time in my life I told myself that I loved Sam, but that love felt untethered. I had heard in a sacrament meeting of The Church of Jesus Christ of Latter-day Saints that there are only two kinds of people in this world—people you love and people you don’t know. I didn’t know Sam. I didn’t know if there was anything to know. I said I loved him, I desperately wanted to love him, but I questioned why. Did I really love him? Could I? Did I even have a right to love him and did he, could he, love me?

It wasn’t until Sam was 15 and I was a senior at Brigham Young University that I began to find the answer to those questions. I was in bed that spring evening, ready to turn in for the night when I got a text from my mother. She had enrolled Sam in yet another new therapy called Spelling to Communicate, and in her classic boundless optimism, sent the family a clip of one of his recent lessons. 

I opened the video and saw a woman sitting at a desk next to my brother. She was reading a lesson to him about Plymouth Rock. She stopped reading to say, “Plymouth Rock is in Massachusetts. That’s M-A-S-S-A-C-H-U-S-E-T- T-S. Sam, where is Plymouth Rock?” In front of him she held a paper-sized piece of white foam board that had the letters I-J – K – L- M- N – O – P glued onto it. “Oh, man,” I thought, this is just another thing to get my mom’s hopes up.” But then Sam poked M. 

The therapist switched the board to show one with A-B-C-D-E-F-G-H. He picked A, then one by one she held up a letterboard and he poked S-S-A-C-H-U- S-E-T-T-S. Sam wasn’t isolating his finger by himself, he was told how to spell Massachusetts, and he was only given a fraction of the alphabet. But I could not lie to myself. With each movement I saw with my own eyes something I never expected to see–there was clear intention in his hands. And not only that, but there was an intention that revealed intelligence. With every letter, everything I thought I knew about my brother came crumbling down.

Over the next few years as Sam progressed with spelling and his world was changing, I had to rebuild my understanding of autism. As a kid I could recite “that autism is a sensory-processing disorder,” but I never fully understood what that meant or its implications. This spelling practitioner taught me that our senses are the means by which we gather information about the environment around us and we then use that information to guide our movements. I know where to pour the water because I can see the cup. I know how to move towards the music because I can hear it. I know to place my foot a certain way to walk because I feel gravity. This ability to effectively process information about our environment directly impacts our ability to interact successfully with our environment, and the ability to sense the same information as others validates our movements to the observing community. This connection between sensory processing and movement is called our sensory-motor feedback loop. The idea is so simple and yet, though we recognize autism as a sensory-processing disorder, it is rarely talked about as a movement disorder. However, recognizing it as such is vital and can make all the difference, especially for an autistic individual’s ability to communicate. 

The spelling to communicate method is based on the understanding that there is a difference between speech and language. Language is a cognitive ability; you can have thoughts about what’s going on in the world around you without ever saying a single word. Those thoughts stay in your brain until you can communicate them, and every form of communication requires some form of motor or using the body. That includes making a facial expression, gesturing, writing, typing, or coordinating your lips, tongue, teeth, and jaw to make speech sounds. If someone is struggling to communicate, that could be either because they are lacking language or they are lacking the motor or movement ability to communicate the language they have. However, we cannot accurately isolate and measure which of those skills is lacking until we’ve given someone a chance at a reliable and robust form of communication that meets their motor abilities, which is usually the gross motor or large muscle movements rather than fine motor or small muscle movements. The purpose of the spelling to communicate method is to give every nonspeaker a chance to have reliable communication. Letterboarding bypasses the fine motor aspect of speech and practices the gross motor function of lifting the shoulder, extending the arm to point to a letter, and pulling back. Practitioners coach and strengthen the motor so that these individuals have the skills and the opportunity to express their inner selves to the outside world. 

Spellers begin practicing the method using three separate letterboards because of what’s called the motor-cognitive seesaw. The higher the motor demand of a communication method, the lower their cognitive output can be. This is not unique to nonspeakers. In 2021 my husband and I trained for a half marathon and at the beginning of our training, my husband would try to talk to me and I couldn’t respond. This was not only because of my weak lung capacity. It was literally harder to process my thoughts when I was putting so much energy into moving my body to run. However, as I kept practicing, that motor demand of running became easier, and I was able to start talking. Later we would be having conversations about politics or religion, all while running. For individuals who have trouble with speech or purposeful motor, expecting them to start with typing is like expecting them to do tricks on a bike without ever teaching them to ride with training wheels. Instead, to start, practitioners will decrease the motor demand by breaking the alphabet into three letterboards, making the targets easier. They’ll practice using the letterboards by reading a lesson and then spelling words from the lesson, like how a piano teacher would use a song to teach piano. Once the individual demonstrates accuracy using the three letterboards, the practitioner moves to the 26-letterboard with the full alphabet on one board, then a printed, laminated board, then a keyboard. The practitioner will teach the student through all of these different levels so that by the time they get to the 26-letterboard or the keyboard, they can have an open conversation while running, so to speak.

The process of being able to spell openly can take varying amounts of time depending on the different movement challenges that the speller has. For my brother who has many sensory and motor challenges, it took 11 months for him to be able to spell his first original words, which were “Love mom Griffin (brother) dad Lisa (friend).” Currently, he has good days when he’s able to spell 10 to 40 words of original thoughts within an hour, and days when he faces many obstacles to controlling his body and cannot spell more than a few words on the 26-letterboard. The moments when he is able to spell openly are thrilling and eye-opening, such as when he was sitting in a lesson with my boss and he spelled, “Do you mind if Julia takes some time off?” I was sitting there in front of my very gracious boss feeling awkward and I asked Sam, “What do you want me to take some time off for?” He spelled, “To just hang.” Three years ago I was staying at home right before I moved to New York for graduate school. I wasn’t even in the room when in the middle of a lesson, he went “rogue” on the letterboard and spelled, “Decide to major in the worst subject, Julia.” He then spelled that he was being funny and wrote, “I only ask for good moments at grad school for you.” On my most recent birthday, his words to me were, “I love you.” 

Now that I am able to communicate with my brother, I feel like my love finally has a place to land. I know him; he is funny and faithful and incredibly perseverant. I understand that his challenges are with his body and not his mind. He loves me and there is nothing more precious to me than the sight of him spelling my name.

While recovering from vertigo, I was treated by our family chiropractor. While making conversation, I told him about my husband’s joke that my vertigo-induced, stumbling gait made me look like Sam. Immediately he responded, “Oh yeah, Sam has vertigo. I can tell by the way he walks and his irregular eye movements. It’s gotten better since I’ve worked on him, but he still has it.” I realized that though I wholly knew and accepted that Sam was intellectually intact, I was still chalking up his imbalance and odd eyes to some sort of deficiency. Even after all I had learned, I hadn’t even thought to hold space that Sam was experiencing something I didn’t understand. After knowing firsthand the terror of vertigo, I imagined what it would be like to be born with it, to not be able to explain what I was going through, and because of that to be thought of as intellectually disabled and even lazy. I felt even more empathy for what my brother goes through and what he’s had to overcome to get this far. I am in awe of his faith having been through so much suffering and of every effort he used to tell me, “I love you” one letter at a time. 

Vertigo was a moment of listening when Sam wasn’t able to communicate his experiences for himself. It was a reminder that there are valid experiences outside of my own and that communication and listening are the key to having loving, fulfilling relationships with those that are different from ourselves. It was listening that set my brother free and gave me a relationship with him like I never imagined.