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Families of nonspeaking autistic people are pushing back at The New York Times after the newspaper last week published an op-ed claiming that spelling — a method through which nonspeakers communicate using a letter board — is “debunked” and unsupported by scientific evidence.
Amy S.F. Lutz, Ph.D., a historian of medicine at the University of Pennsylvania (UPenn) and mother of a profoundly autistic adult son, wrote the op-ed. She wrote that spelling and other forms of “facilitated communication” promise to unlock severely autistic people’s “hidden literacy” — but often fail to do so.
“Spellers” are nonverbal people who communicate through “Spelling to Communicate,” a method that involves pointing to letters or typing words and phrases on a letter board. “Spellers” — people who use the method, many of whom have autism — were the subject of a 2023 documentary by the same name.
But according to Lutz, several studies have shown that people with autism who use facilitated communication are not in control of the message that’s being communicated. She suggests that nondisabled facilitators are the ones controlling the communication.
“Researchers believe that facilitators unintentionally direct the communication in spelling through a host of cues, psychological biases and ideomotor effects (the small, unconscious movements we all exhibit that explain seemingly paranormal activity, like movement on Ouija boards),” Lutz wrote.
Lutz said that money invested in “pseudoscientific” methods, such as facilitated communication, would be better invested in other methods that she suggests are more effective. These include Augmentative and Alternative Communication systems, which she suggested would better serve the approximately 25% of autistic kids who “are nonverbal or minimally verbal.”
But experts, advocates for people with autism and parents of nonspeakers interviewed by The Defender disagreed. They shared their experience raising nonspeakers and using methods such as spelling, which they said helped unlock their children’s full potential and enabled them to communicate with the world.
Honey Rinicella, executive director of the Medical Academy of Pediatrics & Special Needs, said the op-ed “reflects a familiar pattern in this space: a complex and evolving issue being framed as settled, particularly for a population that has historically not been well understood or adequately studied.”
Op-ed author promoting bill that would eliminate funding for spelling in NY
In March, proposed changes to a New York state bill that would deny funding for certain types of communication methods — including those used by “spellers” — prompted an outcry from disability advocates, including descendants of Helen Keller, a renowned 20th-century activist for the disabled who was deaf and blind.
The bill, whose stated purpose is “protecting the communication rights of individuals with disabilities,” passed in the New York State Assembly in June 2025. But in March, lawmakers amended the Senate version of the bill, narrowing protections to forms of communication that can be “validated.” That version has since stalled.
The amendment defines “validated” communication as evidence-based communication methods that have demonstrated results in autonomous communication on the part of the person communicating, City & State New York reported last month.
This excludes communication that may inadvertently reflect the thoughts of an intermediary instead of the person communicating.
Lutz addressed the ongoing debate in her op-ed. “In the New York State Legislature, debate around the adoption of a communication bill of rights for people with severe intellectual disabilities has effectively come down to whether it would only apply to methods that are ‘validated.’”
In an unpublished letter to the editor of the Times, Brian Hooker, Ph.D., chief scientific officer for Children’s Health Defense, pushed back on Lutz’s claims.
“Recently, living relatives of Helen Keller have publicly advocated for preserving access to spelling-based communication methods. They warn that overly restrictive policies risk silencing a new generation of potential ‘Helen Kellers,’” Hooker wrote.
Other parents of nonspeakers agreed. J. Brad Britton, an author and father of a nonspeaking autistic adult, said the pending legislation in New York — and Lutz’s op-ed — have needlessly politicized the issue.
“It hurts my heart that access to communication is politicized at all. We’re talking about tens of thousands of spellers, and potentially millions of people who may never get access because of legislation like this,” Britton said.
Dana Johnson, Ph.D., founder of the Spellers Center, is the co-creator of the Spellers Method. She said Lutz’s op-ed mischaracterized “spelling.”
“Our training is so rigorous in terms of training our providers so that they know how to support these individuals to ensure that we are limiting influence or the possibility of influencing,” Johnson said. “We’re working on building the motor skills first before we jump right into asking … these high-level opinion questions.”
J. B. Handley, author of “Underestimated: An Autism Miracle” and father of a nonspeaking autistic person, said Lutz has a conflict of interest — she lobbied for the New York bill, but didn’t disclose that fact in her op-ed. He said this is part of Lutz’s longstanding efforts to refute spelling and its proponents.
“She’s the puppeteer of the entire thing,” Handley said. “She abuses her credentials as a professor at UPenn to make it seem like she knows what she’s talking about.”
Rinicella said it’s “not surprising” that such policy discussions have begun. But she said it’s “critical that these decisions are informed by both scientific rigor and a clear understanding of the limitations of existing assessment tools.”
Parents describe children’s ‘transformative’ experiences with spelling
Parents of “spellers” who shared their experience raising and caring for their children and observing their growth as spellers described an eye-opening experience in which their children’s full potential was revealed.
Lutz’s “characterization of letterboarding and related spelling modalities as anti-science or offering ‘false hope’ overlooks both compelling personal outcomes and emerging research,” Hooker wrote. He added:
“My own son has been letterboarding — and more recently keyboarding — for five years. Through this method, he openly communicates his thoughts, feelings, and ideas directly to my wife and me, as well as to many others.
“He is now attending high school and aspires to earn a PhD in physics. His work is his own and neither my wife nor I can comprehend the physics problems he is able to complete correctly. His progress has been nothing short of transformative.”
Teresa Holman is the mother of a 35-year-old profoundly autistic son who “lost all language by the age of 2” and experiences seizures approximately every four days. She said that, in 2015, her son began to type — and transformed everything she thought she knew about him.
“The young man that I had been told was retarded used the word tumultuous in his first sentence. It was an ‘out of body experience’ as we learned he knew everything. I have two other children, a doctor and a lawyer. I came to understand that my son Britton is as smart as they are.”
According to Holman, spelling “changed everything” about how she cared for her son Britton — and enabled him “to make his own choices.”
J. Brad Britton, who is no relation to Theresa Holman and her son, Britton Holman, said he spent 20 years believing that his son Sam “couldn’t think clearly or had a learning disability — because that’s what the experts told me.” He was told his son would “never develop beyond a 6- or 7-year-old mentality.”
“The first time I watched a nonspeaker spell didn’t change anything about science for me. It changed how I saw that young man,” J. Brad Britton said. “He was profoundly autistic, flapping his hands, making loud noises, bouncing up and down — and while doing all three of those things, he spelled out a very eloquent sentence that was specific and personalized. That moment changed something in me.”
J. Brad Britton said that seeing another autistic child effectively communicate as a “speller” helped him realize that he had “misunderstood” his own son, Sam, “for nearly 20 years.”
J. Brad Britton co-authored a book with his son, “Real Words with Sam: A Father and Son Navigate Autism, Apraxia, and Unexpected Intelligence.” He said the book contains “Sam’s own words … exactly as he spelled them, letter by letter.”
In one excerpt, where Sam was asked to choose between science, education and politics, he wrote, “EDUCATION BECAUSE THE WORLD NEEDS TO UNDERSTAND HOW TO TEACH NEURODIVERGENT MINDS.”
“These aren’t words a facilitator is producing,” J. Brad Britton said. “This is a man in his 20s sharing his mind with the world after spending most of his life unable to do so.”
Rinicella said that giving nonspeakers the means to communicate is transformative for them as well, not just their parents and caregivers.
“When individuals are presumed to lack capacity based on limited modes of communication, it can shape every aspect of their lives — education, medical care, autonomy and inclusion. Families and clinicians reporting meaningful communication experiences should not be dismissed outright. Those experiences warrant careful, transparent, and rigorous study,” Rinicella said.
Times op-ed wrongly conflates spelling with ‘facilitated communication’
Parents of spellers also told The Defender that Lutz’s op-ed inaccurately conflated “spelling” with what Lutz terms “facilitated communication.” The parents said that the two terms refer to different things. Handley said Lutz “inaccurately frames spelling as facilitated communication.”
Handley said:
“She tries to co-mingle something that we’re not doing to our children with something that historically has been repudiated, and she’s hoping that people are ignorant enough to not look more closely at the topic.
“Lutz would want you to believe that we’re all holding the children’s arms and having them point at a board. What she doesn’t want you to know is that my son types on a keyboard independently.”
J. Brad Britton questioned the narrative that intermediaries end up communicating in place of “spellers” and that spellers can’t communicate information that their facilitators don’t already know. He said:
“Think about how babies learn to walk. We hold their hands up in the air. We keep them balanced. It would be ridiculous to say they’ll never walk because we’re holding up their arms. Over time, we decrease that support until they’re walking on their own, eventually running on their own. Spelling works the same way.
“Sam used a word we had to look up in the dictionary. Nearly every week in his spelling sessions, he says things that completely surprise his communication partner and me.”
Parents, experts question validity of studies ‘debunking’ spelling
Parents of spellers said that Lutz’s op-ed — and mainstream science regarding spelling — also rely on questionable evidence. These scientific narratives, they said, have long held back nonspeaking autistic people.
“For decades, many nonspeaking individuals have been assessed through tools that rely on motor output — speech, pointing, or rapid response — without adequately accounting for conditions like apraxia or other motor planning impairments. When those factors are not considered, the risk is that we are not measuring cognition, we are measuring the ability to physically demonstrate it,” Rinicella said.
Rinicella said studies suggesting that spelling and other similar methods are “debunked” are flawed — and often do not “reflect the full scope of ongoing questions about methodology, participant selection and study design.”
“It is entirely appropriate to ask questions about authorship, influence and validity. It is equally important that research in this area is designed to meaningfully include individuals with complex motor and neurological profiles, something that has not always been the case historically,” Rinicella said.
Johnson said Lutz ignored significant swaths of scientific research and evidence while failing to make a distinction between different types of nonspeakers.
“She tends to use words like ‘all,’ ‘all nonspeakers,’” Johnson said. “There is research out there to talk about autism as a movement motor planning issue. Why is she not looking into that and even considering it? She’s just avoiding that conversation completely and just saying, ‘Well, it doesn’t exist.’”
In his letter, Hooker cited a study that presents a different narrative — a 2020 study published in the journal Scientific Reports, which he said: “examined nine non-speaking autistic letterboard users and found that participants consistently fixated on the correct letters before pointing to them.”
“Their speed, accuracy, and gaze patterns were consistent with independent authorship rather than real-time facilitator cueing,” Hooker wrote.
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Redefining ‘profound autism’ to exclude ‘limited cognitive ability’
The Times’ op-ed came days after the federal Interagency Autism Coordinating Committee (IACC) met and made recommendations for U.S. Health Secretary Robert F. Kennedy Jr. to consider. Dozens of parents of nonspeakers attended the meeting or submitted public comments.
The recommendations include a proposal to revise the definition of “profound autism” — referring to a subset of autistic people who require the greatest degree of day-to-day support — to remove limited cognitive ability from the definition.
Lutz addressed the work of the IACC, which advises the federal government on its $2 billion budget for autism research and services. She suggested the committee should invest in “evidence-based interventions, not on facilitated communication.”
But J. Brad Britton said there is a human cost in dismissing methods such as spelling. “Presuming competence cost me nothing. Not presuming it cost my son years of being underestimated and misunderstood,” he said.
Related articles in The Defender
- ‘Profound Autism’: Will New Definition Lead to Better Care, Research?
- Autism Committee Hears From Non-Speakers, Parents During First Meeting Under RFK Jr.
- RFK Jr.’s New Autism Advisers Set Sights on ‘Many Unanswered Questions’
- ‘Parents Have Waited for 30 Years’: NIH to Study Causes of Autism
- ‘Honesty at Last’: CDC Says ‘No Evidence’ to Support Claim that Vaccines Don’t Cause Autism
- 1 in 31 Kids Had Autism in 2022 — Up From 1 in 36 in 2020
