In early June, Ally Betchan and her family made the monthly trek from their small central Texas town to a therapy center in Austin, hoping that she could learn to communicate.
Like nearly 30% of people with autism, Ally is severely disabled and does not speak.
Ally, 22, sat quietly in a small room next to her instructor, Soma Mukhopadhyay, a sprightly 63-year-old who, by contrast, talked almost nonstop.
More than 30 years ago, Mukhopadhyay taught her nonspeaking autistic son, Tito, to write and type independently, creating a communication method that supporters hailed as transformative and critics have challenged ever since.
Mukhopadhyay held up a clear plastic sheet marked with the alphabet, prompting Ally to make up a story. She slowly pointed at letters to spell “DONNA KNOWS” and then seemed to get stuck.
As Mukhopadhyay occasionally tapped under the letter board on her thigh or leaned in the direction of a letter, Ally eventually spelled: “CARING HURTS.”
“‘Donna knows caring hurts’ — that is a life lesson,” Mukhopadhyay said, nodding in agreement. Then, Ally jabbed many letters in quick succession but distinctly: “SHE LOVES THOSE WHO CARE FOR HER.” Sitting beside her, Ally’s mother, aunt and grandmother smiled.
Mukhopadhyay’s technique, called the Rapid Prompting Method, or RPM, is one of several intended to help nonverbal people learn to communicate using letter boards held by another person. At the core of these assisted spelling methods is a radical assertion: that nonspeaking autistic people may have typical or even extraordinary cognitive abilities, obscured by motor problems and an overwhelmed sensory system.
Proponents of assisted spelling say it has improved the lives of thousands of nonspeakers, some of whom have used it to write memoirs or obtain graduate degrees. Yet despite the potentially profound implications of these communication methods, there has been remarkably little scientific research evaluating them. Citing the risk that the person holding the letter board may influence the messages, and a history of such abuses with prior assisted communication methods, many medical groups have cautioned against them.
All of this has led to a growing debate dividing autistic people, families, and the scientific community. The central question is less about whether breakthroughs like Tito’s are possible than about whether they are as widespread as many proponents claim.
Do assisted spelling methods reliably reveal a person’s own thoughts, or do they give families a false sense of their loved ones’ inner world and capacities?
That uncertainty has led some autism experts to argue that assisted spelling requires urgent examination.
“Currently there is this incredible impasse,” said Dr. David Amaral, the research director of the MIND Institute at the University of California at Davis, with true believers on one side and skeptics on the other.
The methods have steadily increased in popularity over the last decade. In April, a book written by a nonspeaking autistic man named Woody Brown, who was trained by Mukhopadhyay and communicates via a letter board held by his mother, shot up the New York Times bestseller list and sparked debates over the legitimacy of his authorship.
This year, Health Secretary Robert F. Kennedy Jr. appointed several spellers and their parents to an autism panel tasked with setting federal research and policy priorities. In New York, a fight over a proposed Communication Bill of Rights that would enshrine into law the right to use assisted spelling has drawn support from relatives of Helen Keller. And perhaps most visibly, “The Telepathy Tapes,” a viral podcast released in 2024, made the extraordinary claim that some autistic spellers have telepathic abilities.
That podcast is what brought the Betchan family to Mukhopadhyay’s office last year. After hearing about assisted spelling on the show, the family began to wonder if Ally, silent for more than two decades, had something to say.
They started working with Mukhopadhyay, paying $110 for each 45-minute session.
Though Ally’s family is aware of the fraught debate over the legitimacy of assisted spelling, they said it was irrelevant given their firsthand experience. “We see what we see and we know,” said her aunt, Cherie Kocian. “We don’t need data to know that it’s real.”
But the potential consequences of assisted spelling becoming widely used without scientific research to back it are top of mind for Howard Shane, director emeritus of the Center for Communication Enhancement at Boston Children’s Hospital.
In the 1990s, a method called facilitated communication exploded in popularity, promising miraculous access to the inner lives of people who were profoundly disabled. The method involved facilitators physically holding the arms or hands of nonspeakers as they typed on keyboards.
In 1992, lawyers in a sexual abuse case brought by a 16-year-old autistic girl named Betsy Wheaton asked Shane to evaluate the validity of the facilitated communication method used to elicit her allegations. Wheaton had claimed, through a facilitator, that her father and brother had sexually abused her.
In blinded tests, often referred to as message passing tests, Shane independently showed Wheaton and her facilitator images, sometimes matching and sometimes not, and asked Wheaton to type what she saw. Every object correctly identified was based on what the facilitator, and not Wheaton, had been shown.
Practitioners of the newer forms of assisted spelling insist that their approaches, which do not rely on touch, bear no relation to facilitated communication.
Mukhopadhyay’s method made headlines in the early 2000s when she and Tito moved from Bangalore, India, to the United States. While Mukhopadhyay had trained Tito to communicate using a letter board, he later moved on to writing and typing on his own. At age 11, Tito had published an autobiography that included works of poetry.
Language deficits in people with severe autism, Mukhopadhyay theorized, were a motor problem, not a cognitive one. Having a partner hold the letter board, she argued, provided motor support and steadied the dysregulation and sensory overload so common in people with autism, allowing them to communicate.
Many autism experts dispute Mukhopadhyay’s motor theory. They point to data estimating that more than a third of autistic children are considered intellectually disabled. And they question how nonspeakers, many of whom weren’t taught to read and write at school, could know how to spell in the first place.
Even without physical contact, the mere existence of a communication partner raises the possibility of influence.
Mukhopadhyay and other practitioners have also raised suspicions because they refuse to take part in blinded experiments like Shane’s that could reveal whether the communication is truly the subject’s own, arguing that such experiments put undue stress on severely disabled people to prove themselves to skeptics.
“We have a long history of questioning people’s communication,” said Elizabeth Vosseller, a former speech-language pathologist who trained under Mukhopadhyay before founding her own method called Spelling to Communicate based in Herndon, Virginia, which has more than 900 practitioners in 31 countries. Vosseller pointed to the recent history of deaf people being dismissed as cognitively impaired to argue that society should “presume competence” in people who do not speak.
A forthcoming systematic review found that not a single published study has evaluated independent authorship in assisted spelling.
Both Mukhopadhyay and Vosseller acknowledge that communication partners can steer responses.
“There are so many chances with the letter board where people can influence it,” Mukhopadhyay said. Often, she said, she sees parents guide the output out of enthusiasm, but she does not question their belief that the words are their children’s own. “It would be wrong for me to come in between the parent and the child,” she said.
But she brushed off the idea that these cases invalidated her method’s integrity. “If they misuse it, they misuse it — it’s up to them,” she said.
Cases like Tito’s appear to be very rare. Of the thousands of nonspeakers who have trained with Mukhopadhyay over the years, she said only around 15 had gone on to write or type on a keyboard on their own.
But it’s cases like Tito’s that are also the clearest evidence that learning to use language is possible for some. That has led some scientists to argue that we understand too little about the causes of language difficulties in autistic nonspeakers to dismiss assisted spelling.
“Absence of evidence is not the same as evidence of absence,” said Alexandra Woolgar, a cognitive neuroscientist at the University of Cambridge. She argued that concerns about influence needed to be weighed against “the risk of underestimating people who genuinely do understand, who could do so much more if we allow them to communicate in a way that works for them.”
Woolgar is conducting her own blinded tests of assisted spelling. She argued that a broader unanswered question is why nearly 30% of people with autism have minimal or no speech in the first place.
“One possible reason is that their language is impaired,” Woolgar said. “Another possible reason has to do with motor planning or something along that very long pathway between having a thought and actually producing a word.”
To help answer that, Woolgar is conducting a study measuring electrical activity in the brains of nonspeakers to search for signs that they understand spoken language.
While it is difficult to test cognitive ability in people who can’t speak, the idea that no autistic people are intellectually disabled “speaks to the enormous seduction of the ‘intact mind,’” said Amy Lutz, a historian of medicine at the University of Pennsylvania whose son Jonah is minimally speaking and does not use assisted spelling.
That idea preys on parents’ deepest hopes for their children, she said.
“For some parents, providing literally a lifetime of intense, round-the-clock care to an adult child with severe cognitive, communicative and behavioral challenges can feel like pouring all your love and effort into a big bucket with a hole at the bottom,” Lutz said. “Believing that your child is actually brilliant and going to change the world, for those parents, can justify all that labor and sacrifice.”
This article originally appeared in The New York Times.
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