by Jennifer Margulis, A version of this article was first published in the Epoch Times
Approximately 25–30 percent of people with autism either cannot speak or have a vocabulary of 30 words or less. Many others have an ability to speak that’s categorized as unreliable. They resort to scripting (using phrases or sounds from movies, or parroting back what other people say), and they’re unable to find the correct words to convey their thoughts, particularly when they’re stressed.
But now a quiet revolution is underway to help non-speaking people with autism. A surprisingly simple technique, Spelling to Communicate (or S2C for short), has been sweeping the autism community and dramatically changing the lives of people affected by autism.
It all started in 2013 when speech and language pathologist Elizabeth Vosseller, who specializes in autism, began using assistive technology to help her clients better communicate.
Vosseller developed a way of working that enabled people with no functional speech to communicate with their loved ones—often for the first time in their lives.
J.B. Handley and His Son Jamison
Vosseller’s method didn’t really take off, however, until a Stanford-educated investor named J.B. Handley and his son Jamison co-wrote a book about their experience with it.
The book, “Underestimated: An Autism Miracle” was published in 2021.
(Full disclosure: Handley, whom I’ve known since 2015, sent me an advanced reading copy and asked me to endorse the book, which I did.)
Handley is a children’s health advocate, autism dad, and author of “How to End the Autism Epidemic.” Thirteen years ago, he clashed with Dr. Travis Stork on the daytime television show “The Doctors,” in a clip that went viral on the internet and has been watched over 906,000 times.
Since “Underestimated” was released, the book has initiated a tremendous wave of interest in S2C, a technique that’s revolutionizing the way some therapists—and families—think of people with non-verbal autism.
Spellers: Let the Revolution Begin
Wanting to spread the word more widely, Handley and his wife Lisa teamed up with S2C practitioner Dawnmarie Gaivin and cinematographer Pat R. Notaro III to make a documentary about the technique: “Spellers: Let the Revolution Begin.”
As the film explained, J.B.’s friend Honey Rinicella, a mother of twins with autism, began using S2C with her son Vince. Within a few short months Rincilla was having profound back-and-forth conversations with the young man she’d previously thought was cognitively impaired.
Rinicella sent Handley screenshots of her conversations with Vince and suggested he might want to try S2C with his son Jamie. J.B. responded with a video of Jamie that he thought made it clear Jamie would not—maybe ever—be able to hold a sophisticated conversation.
Presuming Competence
One of the most pervasive and highly damaging beliefs about people affected by autism who cannot speak is that they are all intellectually disabled.
According to the CDC, 35.2 percent of American children diagnosed with autism have IQ scores under 70. That includes almost all non-speakers with autism.
But as the film asked, “What if they’ve been wrong—about every single one of them?”
Then it went on to demonstrate how “they” have been wrong about many.
And, more personally, how “they” were wrong about Handley’s young adult son Jamie.
“The thing that blew my mind,” his father said in the film, “was when Elizabeth Vosseller turned to Jamie and said, ‘I know you can do this. I know how smart you are.’”
That’s called “presumed competence,” and it can make all the difference in a non-speaker’s life.
As Dr. Vaishnavi Sarathy, Ph.D., the mother of a non-speaker with autism, explained: “Assumption of intelligence brings respect, whether that intelligence is on display or not. And respect brings dignity.”
Releasing Eloquence
So despite his misgiving, Handley decided to give S2C a try. The second day his son worked with Vosseller, Handley watched dumbfounded as Jamie spelled the word “carnivore.”
Then Vosseller asked him to spell the opposite of carnivore, which was a word that hadn’t been used in the lesson. Sure enough, Jamie spelled “herbivore.”
Wanting to make sure that it wasn’t some kind of trick or trompe l’oeil, Handley asked if that word had been in the lesson.
Vosseller replied, “No, that’s what we call prior knowledge.” Knowledge even Jamie’s father had no idea he had.
Stuck in Silent Cages
The dual themes of joy at being set free from what 2022 Rollins College Valedictorian Elizabeth Bonker called their “silent cages,” and profound regret at the years spent inside those cages, pervade this film.
Jennifer Larson is a prominent advocate for families affected by autism.
Her son, Cade Larson, stared off into the distance as Dawnmarie Gaivin asked Jamie, “So I’m wondering if you have any thoughts on that quote? And if you could make a comment about the brain-body disconnect in advocacy for yourself or other non-speakers, what would that be?”
But then Cade sprang to life. He spelled: “I lived in silence for all my life until last month.” As he spelled this, the camera focused on his mother sitting behind him, suddenly overcome with emotion. (Don’t watch this film without a handkerchief or box of tissues close by.)
“Other than a finite number of family members, most people thought I was dumb. I hated being talked to like I was a baby,” Cade continued spelling. “Now I’m going to change the reality for myself and others.”
‘Why Aren’t They Looking for What Can Help Our Kids?'
“Communication is everything,” Larson said in the film. “We had no real reliable form of communication. We had to just basically guess for 20 years.”
She expressed her frustration over all those lost years: “Why aren’t they looking for what can help our kids? He could have done this years ago. He told me that.”
Why indeed?
According to Gaivin, language tests require motor coordination, and that’s exactly what non-speakers lack.
“Speech,” she explained “is 100 percent motor. Language is 100 percent cognitive.”
What non-speaking people with autism lack is the ability to plan and execute the motor movements required to create speech.
But many—perhaps even most—do not lack the ability to form complex ideas worth communicating.
A Sensory-Motor Processing Challenge
“If you’re looking at autism through the lens of ‘it’s a social-deficit’ model’ or ‘it’s a cognitive disability’ model, then you see what you believe,” Gaivin said in the film. But it’s not those things, she insisted. Instead, non-speaking autism is a sensory-motor processing challenge.
So the key to S2C’s success is that it shifts the burden of communication from fine motor movements, which non-speakers cannot do, to gross motor movements, which they can.
To achieve this, instead of asking non-speakers to write or type letters using a keyboard (two activities that require tremendous fine-motor coordination), S2C practitioners may ask clients to hold a pencil and push it through stenciled letters in a letter board.
The movement of pushing a pencil through a letter is something they can do because it doesn’t require much fine-motor coordination.
S2C takes advantage of neuroplasticity. A practitioner starts with something the client can do and gradually adds adjacent skills.
With practice, spellers advance through stencils to laminate letter boards and eventually to keyboards.
Several of the film’s subjects had gotten to the point of spelling with a keyboard, but none of them were able to touch type. While they gained a tremendous amount of skill, their fine-motor coordination was still not at that level, and they all still required some level of assistance, including Elizabeth Bonker, the college valedictorian who started spelling to communicate when she was just six years old.
A Controversial Technique
That required assistance is at the heart of the opposition to S2C. This opposition comes mostly from the American Speech-Language-Hearing Association (ASHA). But I’ve also heard individual speech pathologists get angry about the technique—so angry that they refuse to learn more about it.
ASHA seems to consider S2C something akin to snake oil: a remedy to trick parents into thinking that their children are smarter and more capable than they actually are.
They even have a warning on their website: “… you can’t tell whether the words being spelled out belong to the autistic child—or to their aide. The aide holding the alphabet board may move the board unintentionally in the direction of the letter that they think the child should select next.”
Their critique does not stop there. They believe that S2C deprives “people of their human right to independent communication because the technique relies on an aide for prompting. This reality raises a host of questions, concerns, and possible dangers.”
So S2C is detrimental, causing more harm than good: “… children miss out on critical services tailored to their needs, jeopardizing their development, education, and autonomy,” ASHA insists.
When asked to comment on whether S2C was harming him and other non-verbal teens with autism, Jamie Handley spelled out, “I think they’re delusional.”
Spellers Are Communicating
And, indeed, watching the spellers in action, especially the interplay between Jamie and his friend Evan, who have an extended discussion about contemporary hip-hop music, it does seem delusional to imagine that this method of communication is somehow “jeopardizing” these young men’s “development, education, and autonomy.”
In fact, all the spellers in the film expressed some combination of pride and pleasure when they successfully communicated their thoughts.
Rather than being stripped of their “human right to independent communication,” they appeared uniformly delighted to be able—finally—to express themselves.
How to Watch the Documentary
To watch, attend, or host a screening, click here.
Jamie Handley, J.B.’s son, had the last word in the movie, “Let the revolution begin,” he spelled.
Indeed, Jamie, it already has.
About the author: Jennifer Margulis, Ph.D., is an award-winning science journalist, Fulbright grantee, and sought-after speaker.
She writes a popular Substack that has over 20,000 subscribers, Vibrant Life, and is a regular contributor to The Epoch Times. A different version of this article first appeared in print in the magazine Radiant Life.