The Plastic Letter Board

The science is clear. The mob is loud. The federal record is being written this year.

It started Friday, with emotionally-charged Facebook posts tagging me. Saturday afternoon, I was at my desk with my phone face-down, trying to do the boring middle of nonprofit work — donor reports, project timelines, the kinds of things no one writes Substack posts about — when an email titled Reprehensible landed in my inbox. The opening line said I should be ashamed.

By the evening, I had counted seventeen messages. By Sunday, twenty-six.

The Instagram post that started the cascade told its readers, by name, to send their concerns to me and provided my email address. [Clearly, this person was unaware of how nonprofits are structured. Boards don’t answer to the executive director; it’s the other way around.] The dean’s office at my vice-president’s employer, a prominent university, was copied separately for those who wanted to escalate. Helen Keller’s great-grandniece had written to many of my colleague’s faculty colleagues. The phrase Helen Keller’s great-grandniece had become a tagline.

This is what professional pressure looks like in 2026. It is well-organized, networked across Facebook groups and Substack subscribers and Spotify podcast listeners, and aimed at the people whose communities depend on getting the science right.

The volume isn’t the story.

I have been doing this work long enough to know that the volume is the ordinary cost of public advocacy on questions that touch families’ grief. The volume is what you accept when you accept the job.

What is interesting is what the messages were for. And what they were not about.

What you can verify yourself

In March, The New York Times ran a glowing review and a Today Show book-club tie-in for a 28-year-old novelist named Woody Brown. Brown communicates by pointing at letters on a board his mother holds. His mother reads the letters aloud. His mother is a former Hollywood story analyst with a master’s in English literature from Northwestern who quit her job in 2012 to take care of him full-time.

The novel — Upward Bound — was published by Hogarth, an imprint of Penguin Random House. It went to the top of Amazon’s bestseller list. Two weeks before Upward Bound came out, Penguin canceled the U.S. release of another novel — a horror book called Shy Girl — after reviewing it for evidence of AI-generated text. Penguin would not tell The Atlantic‘s Daniel Engber whether it had attempted any comparable verification on Brown’s novel (Engber, “The Publishing Mystery That No One Wants to Talk About,” The Atlantic, April 15, 2026).

Engber went back to the Today Show footage. He watched it at quarter speed. When Brown’s mother said To finally be in the room where learning was happening, Brown’s finger appeared to tap Tobgdhi nvza. When she said Without her, there is no me, his finger appeared to point at Wdeha brjum.

The letters Brown was tapping did not spell what his mother said.

Engber published this on April 15. Amy Lutz published her New York Times op-ed two weeks later. The four highest-recommended comments under Amy’s piece — comments with between two hundred and six hundred reader endorsements each — were not about facilitated communication science at all. They were demands that The New York Times account for its own March coverage of Woody Brown.

Sit with that.

The most-engaged response to Amy’s op-ed was readers asking the paper to reckon with its own previous reporting. Not skeptics. Not parents. Not the clinical literature. Readers. The mob upset about Amy’s piece is shouting at the wrong defendant. The general public, when they read Amy, was upset about the paper that published her.

Amy’s piece did not name Woody Brown. We will probably never know whose decision that was. The most influential paper in the country published an unverified celebration of facilitator-mediated novel-writing in March, then published a critique of facilitator-mediated communication in May without addressing its own earlier coverage. The gap is in the public record.

The method, the test, and the answer

Most readers shouldn’t need to know this vocabulary, but here it is, briefly. Facilitated Communication (FC) is a method, popularized in the late 1980s, in which a non-disabled “facilitator” provides physical support — touching the speller’s hand, wrist, elbow, or shoulder — while the speller points to letters on a keyboard or board. Rapid Prompting Method (RPM), Spelling to Communicate (S2C), and The Spellers Method are subsequent rebrands. The American Speech-Language-Hearing Association (ASHA) bundles all of them as “facilitator-dependent techniques” and calls them “discredited” and “pseudoscience” (ASHA, 2018). ASHA’s position is consistent with at least nineteen other professional and advocacy organizations across six continents (Hemsley et al., 2025). One of the authors of the most recent academic synthesis, Sharon Skinner, is an autistic adult.

The empirical question has been the same for thirty years and has had the same answer.

When the facilitator can see a prompt the speller cannot, can the speller produce a correct answer?

In every controlled message-passing study from the 1995 Journal of Applied Behavior Analysis paper to the present, the answer has been no. When the facilitator can see the prompt, the speller is correct. When the facilitator cannot, the speller is wrong, or unable to produce a coherent response at all (Saloviita et al., 2014; Hemsley et al., 2018; Schlosser et al., 2019). This is not a question of sample size. Each speller is their own control. The same person, the same facilitator, the same letterboard — only the facilitator’s information access changes. The pattern is consistent.

The most recent systematic review of Rapid Prompting Method, published in 2019, found zero studies meeting basic methodological criteria — what its authors called “an empty review that documents a meaningful knowledge gap” (Schlosser et al., 2019).

The test requires no specialized equipment. It can be done in a kitchen.

In 2017, a New Jersey appellate court reviewed the conviction of a Rutgers professor named Anna Stubblefield, who had used facilitated communication to claim that a severely cognitively impaired man — referred to in the public record as D.J. — had consented to sexual activity with her. D.J. was nonverbal, wore a diaper, and had been judicially adjudicated as incapacitated (State v. Stubblefield, A-2112-15T1 (N.J. App. Div. 2017)). When his mother and brother became suspicious, they ran their own informal authorship test. They asked D.J. questions only D.J. would know the answers to. The FC-mediated answers were wrong.

That is the test. It took five minutes. It was the evidence that broke the criminal case.

For thirty years, the people promoting these methods have refused to participate in the controlled test that would settle the question. That refusal is the answer.

The pattern in the public record

Amy’s op-ed cited the Wendrow case in Michigan. Julian Wendrow spent 80 days in jail after his daughter, via facilitated communication at school, “spelled” out accusations against him. His wife was charged with neglect and forced to wear an electronic tether. Both children were placed in foster care. The facilitated testimony described nonexistent rooms, named relatives who did not exist, and attributed Christian theology to observant Jewish parents. When the daughter was questioned without her facilitator present, she could not answer “What color is your sweater?” or “Are you a boy or a girl?” The case settled for $1.8 million.

In January 2025 — last year — a father named Kevin Plantan was released from prison after ten months of incarceration on facilitator-mediated allegations from his teenage daughter. Howard Shane (Boston Children’s Hospital, Harvard Medical School) and James Todd (Eastern Michigan University) — both authors of the academic synthesis I cited above — advised the defense. The mother continues to use facilitated communication with the daughter as of this writing.

In 2010, Gigi Jordan force-fed her eight-year-old son a fatal cocktail of painkillers and anti-inflammatories. She believed he had typed, through facilitation, that he wanted to die. The court documented that the child likely could not spell the words his mother said the facilitated outputs contained. Jordan was convicted of first-degree manslaughter. She died by suicide in 2022, hours after the Supreme Court revoked her bail.

By 1995 there were already at least 60 documented cases of false abuse allegations through FC. The pattern continues across thirty-five years and four continents (FacilitatedCommunication.org).

I want to be precise about what I am not claiming. I am not claiming disabled people don’t experience abuse. They do, at higher rates than the general population, and the documented underreporting is real. I am not claiming parents abuse disabled individuals at higher rates than formal supports. I am not claiming every parent using a letterboard is gullible. The mechanism is not gullibility; it is the ideomotor effect, the same unconscious motor response that explains why Ouija boards “work” (Burgess et al., 1998; Shin, Choe, & Kwon, 2023). I am not claiming the children involved have no inner lives. They do. They are not in question.

I am claiming that when a method’s outputs cannot be reliably attributed to the speller — when the very test that would attribute them is the one its practitioners refuse — those outputs cannot legally, medically, or morally be treated as the speller’s voice. The plastic isn’t the harm. The social practice around the plastic is.

What is happening in federal policy this week

This is the part of the story that did not appear in Amy’s op-ed and has not appeared in most of the coverage.

On April 28, six days before this writing, the Interagency Autism Coordinating Committee (IACC) — the federal advisory body that recommends autism research priorities to the Secretary of Health and Human Services — voted to send Secretary Kennedy a recommendation to adopt a federal “profound autism” designation that explicitly removes intellectual disability (ID) from the diagnostic criteria. The cited rationale, in the federal record, is that “minimally speaking or non-speaking individuals with very high support needs demonstrate normal or above-normal intelligence with augmentative communication” (IACC, Topic 2 Attachment C — Profound Autism Final, April 28, 2026).

That sentence is the spelling movement’s central empirical claim. It is now in a federal policy document.

Here is what the redefinition does. The term “profound autism” was introduced in 2021 by the Lancet Commission on the Future of Care and Clinical Research in Autism, describing autistic individuals with the highest support needs — those with intellectual disability, severely limited language, or both (Lord et al., 2022). In May 2025, the Autism Science Foundation and the Profound Autism Alliance organized a Delphi consensus process — roughly 140 researchers, clinicians, parents, and autistic stakeholders — to refine the operational definition for federal research use. Intellectual disability remained one of two qualifying criteria, joined to nonspeaking-or-minimally-speaking communication by an “and/or” (Psychology Today, 2025). IQ was in both the Lancet and the Delphi definitions. Per CDC data, 42.7% of people qualifying as profoundly autistic do so on the basis of intellectual disability alone (Hughes et al., 2023). The IACC’s new definition removes that leg. The constituency I have spent my life advocating for would no longer be the population that “profound autism” describes in federal research and reporting.

Alison Singer, President of the Autism Science Foundation, was the senior author of the consensus profound-autism definition the IACC just rewrote. She is also a twelve-year veteran of the IACC and serves on the board of the organization I direct. She published a public statement the same day as the meeting (Autism Science Foundation, 2026).

Excluding IQ does not serve the interests of the profound autism community; it serves only the interests of a very small subpopulation of people who support facilitated communication, like Spelling to Communicate (S2C). Many proponents of S2C, several of whom serve on the federal IACC, resist including IQ in the definition of profound autism because they believe IQ tests underestimate nonspeaking autistic people.

She wasn’t speculating. Daniel Engber’s Atlantic piece, two weeks before the IACC meeting, reported that Secretary Kennedy in January appointed “two letter-board users and an expert trainer in Spelling to Communicate” to the IACC. The pro-spelling movement’s own International Association for Spelling as Communication confirms one of those appointees by name in their public-facing blog: Hari Srinivasan, a graduate student in neuroscience at Vanderbilt and a published author, is identified as a board member of the IACC (Le Pape, I-ASC).

The concern is not personal. Mr. Srinivasan has a verifiable academic record, and I will not punch down. The concern is structural. A federal advisory committee that recommends federal autism research priorities cannot be received as expert consensus when it includes interested parties to one side of the very question its recommendations address. This is true regardless of whose communication methodology is at issue. It would be true if the spelling movement were correct on the facts.

Singer also documented that the IACC meeting “likely violated FACA rules” — the Federal Advisory Committee Act — by circulating final documents and expecting members to vote on them without input. In her twelve years on the IACC, she had never seen materials marked final before the meeting at which they were voted on. The procedural problem is in writing in the public record by a former IACC member.

Federal autism research funding follows federal definitions. If HHS adopts the IACC recommendation, money for “profound autism” research will flow toward studying spelling-claimed-intellectually-intact nonspeakers. The constituency the term was developed to describe — people with both intellectual disability and severe communication impairment, who require continuous supervision and lifelong care — will lose its definitional anchor.

Senator Patricia Fahy, sponsor of a New York bill S7992, “Communication Bill of Rights,” is under intense pressure by the same mobs filling my own inbox. What horrible act did she commit to warrant such ire? She amended the bill to include the words “autonomous and validated.” Without those amendments, the bill would have legislatively recognized facilitated communication and its variants as equal competitors to scientifically validated methods of communication for the limited funding and resources for communication supports in New York. The same coalition pushing the IACC at the federal level had been pushing New York at the state level for months.

The mob in my inbox is the loudest layer. The policy story is the consequential one.

The strongest argument from the other side

If you want to find what the spelling movement actually argues — not the rage emails, not the Facebook posts — read “Top 10 Myths About S2C Debunked” by Jennifer Binder Le Pape on the I-ASC website. It is the most sophisticated, structured, well-cited document the movement has produced. Anyone who shares opposition material with you about Amy’s piece will eventually share it. I want to engage it directly, because it deserves the engagement.

The piece cites three academic researchers as supporting evidence: Elizabeth Torres at Rutgers, Alex Woolgar at Cambridge, and Vikram Jaswal at the University of Virginia. The motor-research and receptive-language-research questions are real and important, and the answers they yield (autistic people often have neuromotor difficulties; nonspeakers often comprehend spoken language) are not in dispute. Neither addresses the authorship question. Jaswal’s eye-tracking work has been specifically critiqued in peer-reviewed literature (Beals, 2021; Vyse, 2020).

The piece argues that “natural message passing” — spellers conveying medical symptoms to doctors, for instance — should count as authorship evidence. It cannot. Controlled tests exist precisely because uncontrolled observations cannot rule out facilitator inference, contextual cues, prior knowledge, or coincidence. The reason the test requires controlled conditions is the reason “natural” observations don’t substitute for it.

The piece argues that prompting is universal in special education — Applied Behavior Analysis, the Picture Exchange Communication System, speech and occupational therapy. This is the strongest individual point in the document. It also has an answer. Mainstream prompt-based instruction explicitly aims to fade the prompts, so the user communicates independently. The I-ASC document itself, in its discussion of Myth 4, acknowledges that many users remain dependent on a Communication Regulation Partner for years or permanently — eight years and three thousand hours of practice, in one cited case, to achieve sixty minutes of independent typing. Prompts that never fade aren’t supported communication. They are the partner becoming part of the communication system itself.

The piece closes by asserting that “a small group of detractors cannot unilaterally declare these methods to be ‘debunked.’” The “small group” is the international consensus of nineteen-plus professional organizations across six continents and the entire current peer-reviewed academic literature on the question. That framing is rhetoric; the institutional consensus is documented.

I am going through this not to be combative but because if you read the I-ASC piece — and you should, because I have named it — you will see that each rebuttal addresses a real objection but does not survive careful examination. That is the empirical question. The opposition’s strongest case has the same gaps as its weakest.

Where I land

Before I get there, a line.

I have friends who use spelling methods with their kids. I know the love is real. I know the years of trying everything are real. Those families are always welcome in my circles. Whatever method they are using to try to reach their children is their call, made with their time and their funds and their love. I am not interested in being a gatekeeper to anyone’s family.

What I will not give a single inch of patience to is the part of this movement that has decided being asked an empirical question is grounds for harassment. People who tag a colleague’s dean and twelve of her academic colleagues to get her professionally punished. People who flood an inbox demanding that an organization repudiate a board-endorsed op-ed. People who armchair diagnose strangers with trauma in public Facebook posts. People who toss ad hominems like confetti and call it activism.

Those are different groups. The first are people who would likely be quite angry at the bullies if they saw half of the senseless mischaracterizations of my colleagues and me. The second is what I am responding to in this essay.

The mob in my inbox is asking my organization to repudiate Amy’s op-ed. Speaking only for myself: the answer is no.

The op-ed is correct. The institutional ground it stands on — ASHA, the Australasian Society for Intellectual Disability, the international academic synthesis literature— has been the consensus position of the organization I lead for years (NCSA, 2021). The National Council on Severe Autism board has unanimously supported Amy’s piece. So has the Autism Science Foundation, publicly. There is nothing to repudiate.

I’m also not asking for anyone to be banned from anything. Families are free to try whatever interventions they want, with their own time and their own funds. The dispute has never been about private practice. The dispute is about whether the state should enshrine unvalidated methods as legally recognized communication, whether federal research dollars should flow toward them rather than toward catatonia treatment access (the policy fight Amy has led for a decade), and whether facilitator-mediated outputs should be treated as the speller’s voice in courtrooms, classrooms, and federal advisory committees.

I will keep saying — in the work I do, on this page, anywhere — what I and the international consensus say already: that every form of independent communication deserves enthusiastic support. Independent typing on an iPad is communication. The Picture Exchange Communication System is communication. American Sign Language is communication. Vocalizations, gestures, behavior, and facial expression are communication. Feature-matched augmentative and alternative communication assessment, conducted by qualified speech-language pathologists, is the affirmative answer to “what do we do for nonspeakers.” The dispute over facilitator-mediated typing has never been about whether nonspeakers can communicate. It has been about who is communicating when a partner is required.

There is a deeper move I want to name, and it comes from a clinical psychologist whose name I do not know who left a comment under Amy’s op-ed. The facilitated communication movement is built on a hidden premise — that a nonspeaking person needs to be revealed as secretly intelligent in order to deserve dignity. The healthier ground is that profoundly autistic people deserve dignity, autonomy, and care as they are. Intelligence is not the cost of admission to being valued. My organization exists because the population it serves — people with severe forms of autism and intellectual disability, who require continuous supervision and lifelong care — deserves federal research priorities, supported housing, electroconvulsive therapy access for catatonia (which over 30 years of scientific literature actually validate as safe and effective), wandering safety measures, and a public-policy environment that names their actual needs. They do not need to be reframed as secret valedictorians to deserve the help.

The autistic adults who agree with this position are not absent from the conversation. Jonathan Machnee, an autistic writer who spent a decade inside the neurodiversity movement before publicly leaving it, called facilitated communication “a long-debunked pseudoscience that has been very thoroughly shown to not involve actual communication from the autistic person” three weeks ago in his Substack. He is one. There are others. The opposition’s “no autistic voices in your article” framing is selective: it counts autistic voices that agree with the spelling movement and discounts autistic voices that don’t.

What you can do

Read the documents. Read Amy’s op-ed (Lutz, NYT, May 1, 2026). Read Daniel Engber’s piece in The Atlantic. Read Zaid Jilani‘s December 2024 reporting on The Telepathy Tapes, in which the podcast’s own scientific advisor admits the cases featured in the show don’t meet her own evidentiary standard. In a follow-up six months later, Jilani documented the show’s producers using a copyright complaint to try to suppress a YouTube debunking by Janyce Boynton — a former facilitator who broke from the method after failing the same blinded test that broke the Stubblefield case (Jilani, 2025). Read Autism Science Foundation‘s public statement on the IACC. Read the I-ASC document I named, alongside this one. The arguments deserve direct engagement.

Write to your state senators about communication-bill legislation. Senator Fahy’s amendments to New York’s S7992 are the model. The state should not legislatively recognize unvalidated communication methods while the validation question remains open.

Write to your federal representatives about the IACC. The committee’s recommendation to remove intellectual disability from the federal “profound autism” definition would functionally erase nearly half of the constituency the term was developed to describe. Singer’s public ASF statement and the Hemsley et al. 2025 academic synthesis are the documents to attach..

If you get sent another Instagram/Facebook post or email telling its readers to ask me or my organization to repudiate Amy Lutz’s op-ed, you can forward this essay instead. The board of the National Council on Severe Autism has fully endorsed her piece. So has the Autism Science Foundation. So have the international professional organizations whose position statements span four decades.

The plastic letter board is the surface. What is behind it — the policy fight, the institutional capture, the harm catalog, the empirical question that has had the same answer for thirty years — is what I am not going to stop saying out loud.

I don’t get to opt out of this fight. None of the people who have been doing this work for decades do. The federal record is being written this year. So is the state legislative record. So is the scientific record.

The question is whether the institutional consensus, built across forty years and four continents, will be drowned out by a mob, or whether it will hold.

It will hold. I am going to keep holding it.

---

Jackie Kancir is the Executive Director of the National Council on Severe Autism (NCSA), a national advocacy organization focused on the needs of individuals and families affected by severe forms of autism and related neurodevelopmental disorders. The views in this essay are her own.