It was dark and I was ready to turn in for the night when I got a text from my mom. My face became illuminated by the phone screen as I opened my messages. “I just started Sam in a new therapy called Spelling to Communicate. You’ll never believe what he spelled!” I rolled my eyes. My mom was always optimistic about Sam’s progress with autism, to the point where the rest of the family questioned her sense of reality.
In reluctant support, I opened the video linked at the bottom of her message.
I saw a woman sitting at a desk next to my brother. Sam was sitting in his wheelchair fidgeting. His head shook back and forth, pivoting on his neck in a figure eight, a quick jab to the left then a slow return to look up to the right with his crossed eyes. His legs were also crossed in a yoga-like pose, evidence of his extreme flexibility. I was told as a child that this was a symptom of his condition, his muscles are too loose. Even as a baby he was flimsy. He had trouble holding himself up, his limbs flopped, and his head bobbled. When he did begin to walk at the age of 3, it was an unbalanced totter.
I could also see in the video that his arms were folded across his chest, the hand on top was open and flat, placed delicately on his arm. It reminded me how unreliable his hands are. He was always shaking or clapping them and grabbing things he shouldn’t. He couldn’t use his hands to feed himself, get dressed or do anything that required the slightest dexterity. He had also never spoken an understandable word.
I remember as a kid explaining his disability to my friends who would ask about it. “Sam looks 5 on the outside but he’s 2 on the inside,” I had learned to say. As the years went on, however, the difference between the numbers kept increasing. “He’s 7 on the outside but 2 on the inside.” “Well, he’s 9 on the outside but 2 on the inside.” When he was 9, I was 16 and I remember my father making a comment at dinner, “You know, I think Sam knows his name.” I would call Sam’s name to see if he would respond. Among all his hand flapping, head shaking and unreasoned giggling, it was hard to tell if the slightly longer look in my direction was really anything at all.
In the video, his teacher began to read a lesson about Plymouth Rock. “The Mayflower landed at Plymouth Rock in December 1620.” As she read, she would stop to spell out certain words. “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?”
The woman had placed Sam’s hand in what looked like a black sock with a hole in the top left corner so that his pointer finger could poke through. With Sam still shaking his head, she held in front of him a white foam board, only slightly bigger than a piece of printer paper. Glued to the board were nine big foam letters of different textures and colors. This board had J-K-L-M-N-O-P-Q-R laid out in two rows. The teacher repeated the question, “Where is Plymouth Rock, Sam?” He lifted a shaky hand and jabbed his isolated finger forward to scratch the letter M, then pulled back.
“Good job, Sam! Nice, right on it,” she said. As if from muscle memory, she quickly placed the board down to pick up another, this one with the letters A-B-C-D-E-F-G-H-I on it. Sam was still shaking his head. “Look at the board, Sam” she said. “Get it, get it, get it” she said, prompting Sam’s arm to move from its station in the air. Sam’s arm lunged again, this time hitting the white space between the A and the B, he lingered, scratching the board there, trying to inchworm his way to the A. “Pull back and get it,” she said. She reset his arm by pulling it back to a neutral position, she then let go and he sprung it like a catapult. He hit A then pulled back.
She switched the boards again, this time presenting him with the letters S-T-U-V-W-X-Y-Z. He hit R, then overcorrected and swung over to T, finally pulling back with the help of his teacher and striking S then pulling back himself.
With each movement I saw with my own eyes Sam’s aim and his intention; he pulled his hand back after striking each correct letter, not before. I had never seen him move his body so purposefully, and he was spelling Massachusetts! In an instant, any doubt about whether Sam was “in there” dissipated, and with every letter he plucked, everything I thought I knew about him was stripped away.
M — He is not 2 on the inside.
A — He knows more than just his name.
S — He has thoughts and feelings.
S — He has wishes and desires.
A — There is so much more to know about Sam.
C — I will get to know him.
H — He knows me.
U — He has known everything this whole time.
S — He has heard everything we have ever said in front of him.
E — What is it like being trapped inside?
T — What is he dying to say?
T — What is it like to finally be free?
S — What does Sam think about me?
For the first 15 years of his life, my nonspeaking autistic brother was underestimated and misunderstood. Now, a new communication method would help me know my real brother for the first time. Not only that, but nonspeaking autistic voices could actually be the ones leading a different kind of conversation about nonspeaking autism.
Language is a cognitive function; everyone has thoughts that are never said in words. Language sits in our heads until it can be expressed. And yet, speech is a physical function, the “finest of fine motor skills” as Dr. Vikram Jaswal, professor at the University of Virginia, stated. It’s the ability to coordinate the tiny muscles of the lips, teeth, tongue and articulators to make speech sounds. In fact, every form of communication — facial expressions, gestures, speaking, writing or typing — requires the ability to move the body purposefully.
Because of this, scholars Anne Donnellan, David Hill, and Martha Leary note in their article “Rethinking autism: implications of sensory and movement differences for understanding and support,” we shouldn’t assume that nonspeakers have nothing to say. Once body movements can become purposeful, Donnellan and Elizabeth Torres observe in their work with Frontiers in Integrative Neuroscience, “we can unveil the best sensory capabilities of each child as well as their unique predispositions to learn.” In application of this knowledge, my brother Sam’s practitioner, Dawnmarie Gaivin, who founded Transcending Apraxia, knew that his intellect had been intact his whole life; it was his physical challenges that kept him from fully expressing himself.
My brother is not unique in his circumstances. It is estimated that 25% to 30% of people with autism are nonspeaking, approximately 33 million people worldwide, yet only a small fraction have been treated as intellectually capable and taught to communicate. This leaves millions to “suffer in silence” writes Elizabeth Bonker, autistic nonspeaker, writer, advocate, founder of nonprofit Communication 4 All, and Rollins College class of ’22 valedictorian. Bonker began learning to spell on a letterboard at age 6 and now types to communicate. She wrote her valedictorian speech by single-finger typing on a keyboard, and the speech was delivered via a voice output device. In an essay she wrote, “non-speaking autism is so poorly understood — it’s not a cognitive disorder — and I believe every non-speaker with autism can learn to communicate as I do.”
For the first 15 years of his life, my nonspeaking autistic brother was underestimated and misunderstood. Now, a new communication method would help me know my real brother for the first time.
It is essential that we release and listen to these long-hidden voices. On a foundational human level, the base act of empathy should move us to care about the freedom and voices of this population. Beyond that, if we are to uphold the unalienable rights of life, liberty and the pursuit of happiness, then our societal development should move in a direction that furthers the communication and self-direction of nonspeakers.
Bonker stated in her valedictory address, “There are 31 million nonspeakers with autism in the world who are locked in a silent cage. My life will be dedicated to relieving them from suffering in silence and to giving them voices to choose their own way.”
Before Sam began spelling, I knew that he had physical challenges — his hands were unreliable, his muscles were loose — but I had always assumed that these were symptoms of an intellectual disability. After learning about the physical challenges of autism and the implications for communication, it seemed cruel that anyone, doctors, therapists and me included, simply jumped to conclusions about Sam’s inner life. Those conditions were why we could not see his intellect, not evidence that he was lacking it.
Elizabeth Vosseller, founder of the International Association for Spelling as Communication, explains how people who drool are traditionally seen as intellectually less-than when in reality the correct paradigm is they simply struggle with the physical ability to seal their lips. Communication, in other words, has changed the way we see individuals with nonspeaking autism.
On an afternoon when my brother was yelling, shaking and hitting his head, we had no explanation for his behavior and were frustrated and scared by his actions. On the letterboard, however, he was able to spell, “I very much hurt right now.” “Where does it hurt?” my mom asked. “Head. Can’t quite describe,” he spelled. She asked him what would help. He spelled, “Sit with me.”
Previous to spelling, when Sam behaved this way, we thought his actions were senseless. Now, he has opened a window into his world, and we feel empathy for him rather than frustration, or worse simply blaming him. Now, he can tell us how to help.
Sam faced many physical challenges in learning to spell on the letterboard. He had to build the physical stamina to support his trunk and sit up for a sustained period of time. He had to painstakingly practice coordinating his eyes and shoulder movements to point to the letter he wanted. Eleven months after his first spelling session, Sam was in a lesson and asked what the universal language was. This time the practitioner held up one board with all 26 letters, and instead of spelling the answer from the lesson (math), he spelled L-O-V-E. He then proceeded to spell, “mom, Griffin, dad, Lisa,” friends and family that were all in the house. Those were his first original words.
As Sam’s spelling skills increased, the text message updates from my mom with Sam’s open spelling would become longer and more revealing. Two months after his first open words, he spelled, “Mom, thank you for my life.” Later he let us know that he is a “Slytherin” and that his New Year’s resolution was “to join the others on Instagram.” One summer I was staying at home right before moving 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.”
If we are to uphold the unalienable rights of life, liberty and the pursuit of happiness, then our societal development should move in a direction that furthers the communication and self-direction of nonspeakers.
It was a gift like no other to be teased by my little brother for the first time.
Before his 17th birthday, my mom asked him what he wanted for a present. He spelled, “the faith to intend to complete a mission sometime.” Later that year he answered all the baptismal interview questions by spelling and was baptized into The Church of Jesus Christ of Latter-day Saints. A year and a half after his baptism, he was set apart as a service missionary on the mission he is currently serving.
His personal goal: “find other autistic Mormon children to witness to.”
I’ve come to believe that nonspeaking autistic voices must be leading the conversation about nonspeaking autism. As stated on the Autistic Self Advocacy Network website, “When non-autistic people make decisions about autism without Autistic input, those decisions are usually bad.”
And nonspeaking autistics have largely been misunderstood and left out of the conversation entirely. But with more communication, nonspeakers can begin to not only contribute but guide the conversation with invaluable and long-since missing insight that will better serve their community.
Watching Sam spell is a beautiful and long process. He has overcome many physical limitations in the last five years of spelling, but it is still very difficult. Currently, on a good day, he can spell 10 to 40 words of original thoughts within an hour. On days when he faces many obstacles to controlling his body, he cannot spell more than a few words. Still, now that this channel of communication is open, I’ve come to I know my brother; he is funny and faithful and incredibly loving. He will change and I will change, but now, because of communication, we have a relationship that can morph and grow together as we learn about each other.
As he continues to spell, one day I hope he will write what it was like to spell “Massachusetts” for the first time, what it was like to not be able to communicate, and what it was like to finally be recognized for who he truly was. For now, he’s given a glimpse of his experiences in his latest poem, “Gold, Frankincense and Miracles”:
I remember songs heard only before Christmas.
I remember my sisters’ voices singing.
I remember smelling baked goodness from mom’s kitchen.
I remember Bowie (our dog) running like he’d seen a ghost.
I remember sitting on the leather sofa wondering if he heard my pleas, quietly or not so quietly sitting in my world, waiting for the miracle of His birth and my release from silence.
Christmas miracles don’t happen only in December.