Parents With Non-Verbal Autistic Children Are Using a Miraculous Communication Method. But Is It Actually a Mirage?

Using letterboards and facilitators, non-verbal individuals are finally able to spell out messages. But many specialists warn that the messages may not be their own.

Jason Jacoby Lee seated alongside his father Karl Jacoby. Screenshot taken from @mariemyungoklee’s Instagram account. Photo credit: Marie Myung-Ok Lee.

For the first two decades of his life, Jason Jacoby Lee struggled to communicate with the world. As a young man with what’s referred to as non-verbal or non-speaking autism, he could say no more than a few simple words.

Specialists told his parents that he had an IQ of just 40, meaning he had a moderate cognitive impairment that would prevent him from doing all sorts of everyday tasks. Jason lacked the capacity for rich communication that his parents possessed.

Both of them are highly-educated and well-spoken professionals. His mother, Marie Myung-Ok Lee, is a novelist who teaches writing at Columbia University; his father Karl Jacoby is a Columbia University-based historian.

For years, they have struggled to figure out a way to break through the barrier of silence that had been imposed on Jason through his condition.

In the past few years, they had a breakthrough. They started taking Jason to specialists who introduced them to a new communication technique called Rapid Prompting Method (RPM).

With RPM, non-verbal individuals use a letterboard and prompting from a trained facilitator to spell out their thoughts by pointing to individual letters. Informally, individuals who use RPM and related communications methods are dubbed “Spellers.”

RPM was developed by Soma Mukhopadhyay, an Indian national and mother of an autistic child who moved to the U.S. and popularized the technique after starting Helping Autism through Learning and Outreach (HALO) in Austin, Texas, in 2004.

Susan Raitt, who works as an antitrust lawyer with the Federal Trade Commission (FTC), is a good friend of Jason’s parents and also visited with many of the same therapists that he did — her daughter also has a similar but not identical condition to Jason’s.

“There is a large population of…Spellers in Long Island,” Raitt told me, noting that Soma (in the RPM world she usually goes by her first name) personally traveled to New York to promote the technique.

In Myung-OK Lee’s telling, RPM was life-changing to Jason. Over e-mail, she pointed me to an op-ed she had written for The Atlantic in 2012 describing the struggles she experienced raising Jason.

A doctor told her that then-12-year-old son was “functioning at the bottom 1 percent of children his age.” Jason would frequently violently lash out, hurting or even biting other people.

But once Jason started using RPM, Myung-Ok Lee said, that started to change. She started to see fewer public meltdowns, even though he can still be aggressive at times.

“We had to DRIVE to California in 2016 from MANHATTAN to get him a special therapy,” she told me over e-mail. “We have not been on a plane in years because of his inability to communicate. This year we took Delta.”

The most life-changing change for Jason was that he could finally communicate as well as any other adult.

By offering him a letterboard and stabilizing his arm, Jason is able to spell out his thoughts in a way that he never could have vocalized them with his mouth. (Myung-Ok Lee said holding his arm is a modification from traditional RPM, which usually doesn’t allow facilitators to touch the client.)

To see an example, see the video below (Substack does not allow the embedding of Instagram videos so you will be taken to that app once you click the image):

He’s written op-eds about his fear of unleashed dogs as an autistic person and is even working on a proposal for a memoir about his life.

“Proud papa moment: my son, who has non-speaking autism (and whom we were told only had an IQ of 40) just wrote his first essay--on disability rights, no less,” his father posted to X shortly after the publication of his essay on unleashed dogs.

Raitt, whose daughter Saoirse started using RPM when they were living in New York and uses a variation of it in Minnesota where they live now, is similarly satisfied.

She discovered that her daughter had picked up on all sorts of things.

“While she was pretty anxious about doing it, it showed us that unbeknownst to us she knew about things such as competition and inventions,” Raitt said, pointing to her own career as an FTC lawyer.

“As I heard one Speller at a conference say a couple years ago he described himself as an exquisite eavesdropper,” she said. “And I think Saoirse is the same way. Especially when you don’t have a heck of a lot of language and you’re kind of shut up in your own brain. You really listen to all that’s going on around you.”

Sally Leivermann with her niece Saiorse. Photo credit: Susain Raitt.

Myung-Ok Lee has been quick to spread the word of Jason’s use of the letterboard to finally communicate to the outside world. Like the video posted above, she regularly posts updates to Instagram featuring Jason spelling with the help of his father.

But not everyone has been pleased with the videos. She has received a number of negative comments from people who object to the practice. Those comments led her to pen an op-ed for Salon in late August titled: “Like Tim Walz, we were also wrongly accused of abusing our special needs son.”

She pointed to a Snopes fact-check about Walz that debunked a video some trolls on the Internet used to claim that the Minnesota Governor had violently yanked his son around.

In the op-ed, she noted that Jason no longer reads the comments because they’re so hurtful.

When I browsed through the Instagram videos I did indeed find some galling remarks.

“Dear God. Someone please notify Adult Protective Services for Jason. This is nothing short of emotional and mental abuse. Something's really wrong here,” one user wrote.

But not every critical comment came across as so rude or hurtful. Some of the commenters were simply skeptical about the method that Jason was using.

“Wasn’t this method of assisted communication proven to be ineffective?” asked one commenter last month.

A facilitator-turned-critic

Photo by Miguel Alcântara on Unsplash

The origins of using letterboards or stencils to assist nonverbal children in communicating are in the process of what’s called facilitated communication (FC).

In the 1960s and 1970s, educators and therapists who worked with non-verbal children with autism and other disorders started to experiment with helping them type out their thoughts instead.

The practice of FC was eventually popularized in Australia and then crossed the pond to the United States.

One of the American facilitators who began using the process with non-verbal clients was named Janyce Boynton.

Boynton was trained to use FC in 1992.

“I passionately believed that, as a facilitator, I could help one of my students break free from her autistic, nonverbal existence,” she explained in a journal article published years later.

One day she was working with a student named Betsy Wheaton, whose story was later captured in the Frontline documentary “Prisoners of Silence.”

As she helped Wheaton type out her thoughts, she was horrified by what she was saw. She noticed that Betsy was acting out more and more, including with physical violence.

Boynton began to worry that Wheaton was being abused at home. And sure enough, she began to type out messages confirming those fears — accusing her entire family of sexually abusing her.

Betsy and her brother were removed from the family by the local authorities while they investigated.

But her parents strenuously denied the allegations and hired an expert, Dr. Howard Shane of Boston Children’s Hospital, to try to debunk the messages Betsy had been writing.

He came up with what’s called a “double-blind” exam to test the authenticity of the messages.

The test was simple: Betsy and her facilitator would be shown a series of objects. When they were shown different objects, we could see if Betsy, with the aid of her facilitator, would type out the picture she saw or the one her facilitator saw.

When Boynton participated in the test, she realized she couldn’t get the answers right when she didn’t see the object that the evaluator showed only to Betsy. It was that day that her faith in the process crumbled, as she wrote in her journal article years later:

I felt such devastation, panic, pain, loneliness—a myriad of emotions difficult to put into words. The whole FC thing unraveled for me that day, and I did not have an explanation for any of it. Almost immediately, I started rationalizing away the truth. Though it was not true, I went away from the testing telling myself that the situation had been hostile, the evaluator had been hostile, everyone had turned against me. Incredibly, I even tried facilitating with the child in the week or two after the testing, resulting in more outrageous and false allegations. The parents, understandably, asked that I no longer work with the child. I felt tremendous loss.

The Wheatons were reunited and Boynton turned against the practice of FC. The double-blind tests that Shane had used in her case became commonplace in studies of FC. To this day, there is not one scientific study that has validated its use. In every study, facilitators and their clients failed the double-blind testing — with researchers coming to the conclusion that it was the facilitators who were actually authoring the messages.

Researchers by and large did not come to the conclusion that the facilitators were acting in bad faith. Instead, they pointed to something called the ideomotor effect, a psychological process where people involuntarily move their bodies in response to their thoughts. The effect could explain not only why facilitators were unwittingly authoring these messages but also how people operate devices like Ouija boards.

In the years since the wave of debunking studies in the 1990s, FC has largely fallen out of favor. But new variations of a facilitator using a letterboard, like RPM, continue to proliferate.

When I showed Boynton the videos that Myung-Ok Lee had posted of Jason, she immediately labeled it as a form of FC. And she showed no confidence that Jason was the author of the messages.

She pointed to the fact that Jason is often not looking at the letterboard as he types.

Jason Jacoby Lee typing alongside his father Karl Jacoby. Screenshot taken from @mariemyungoklee’s Instagram account. Photo credit: Marie Myung-Ok Lee.

“You need central vision to detect letters,” she told me. “Peripheral vision is designed to detect movement and shadows, not distinct letters.”

Katherine Beals, an autism researcher at Drexel University and the mother of an autistic child herself, concurred.

“Peripheral vision is not good for high-definition — like letter recognition,” She said. “So we could all use peripheral vision to be aware that there's something approaching from the side, that there's been a change in lighting to the side, you know, but if you look up the studies on peripheral vision, peripheral vision does not include the ability to identify letters.”

After reaching out to Boynton and Beals, I tried typing with one finger myself on a stationary keyboard — not one being held by somebody else that is constantly moving as you’re tapping on it — without looking at it.

Here was the result of me trying to type “I want to go to the park now.”

pi eznt to gfontonte parl now

Try it yourself — look away from your keyboard and try to type with one hand. You’ll find that it’s actually really stressful and not a very intuitive way to communicate.

When I asked Myung-Ok Lee about the critics of the method, she was unmoved. She pointed to the trip on Delta that they took earlier.

“He was able to tell us he preferred NOT to use adult diapers and would just not drink on the flight instead,” she told me in an e-mail. “He told us using the small airplane bathrooms was hard for him. If we were making this up I think I would have spelled he *wanted* the diapers just to be safe and proceeded. Obviously someone with their own free will is harder to ‘take care of’ than a nonspeaker where all of the decisions are just made.”

Beals was unconvinced by Myung-Ok Lee’s explanation.

“Facilitators--like fiction writers--can (even unwittingly) create personas with different goals & perspectives from their own,” she told me in an e-mail. “If she really wanted to test authorship, she could do a facilitator blinded test. But no parents seem to want to go there.”

Raitt acknowledged to me that her daughter has not been through a complete double-blind test. But she had little doubt in the communication method she says has finally allowed her daughter to open up and speak more than a few simple words.

“I have utter faith that what Saoirse has written are her own words,” she said.

Facilitated communication under a different name?

Katharine Beals’s headshot. Photo credit; Katharine Beals.

But there is one major difference between what Saoirse does with her therapists in Minnesota and what Jason’s parents are doing with him. Her therapists are using a variation of RPM that has sometimes been called and Spelling 2 Communicate (S2C) or Speller’s Method.

Unlike FC, the facilitators in RPM and S2C do not touch the child (recall that Myung-Ok Lee acknowledged that she was breaking from pure RPM protocol by allowing Jason’s arm to be held).

Both methods typically involve using stencils or letterboards that are held up in the air that children then point to in order to communicate, letter by letter.

“The main difference is that the display is not stationary,” Ralf Schlosser, a communication disorders specialist at Northeastern University told me.

S2C has spread rapidly in years. The International Association for Spelling as Communication estimated in its 2022 annual report that there were over 260 trained practitioners in the U.S. in at least three dozen states.

Skeptics like Beals are quick to note that while facilitators are not touching the individuals who are using RPM and S2C, they are using other subtle cues to guide them to the letters they’re pointing to.

For instance, facilitators often move the boards as the students are tapping on it; other times, they may use visual cues like moving their hands or verbal affirmation to guide the students to the correct answer.

“In some cases, the Rapid Prompting Method to a naive person would look like it’s something else, although it isn’t,” she said.

Schlosser worked with the American Speech-Language-Hearing Association, the major association of speech language pathologists in the country, to conduct systematic review of studies on RPM and S2C.

“We came up with a big zero in terms of studies that really look at authorship. And so this is called an empty review,” he said. “And so we cannot say that it doesn’t work because there’s no evidence that it doesn’t work, but there’s also no evidence that it does work.”

Frustrating researchers like Schlosser, advocates for and practitioners of RPM and S2C have been unwilling to take part in scientific studies like the double-blind tests that led to the discrediting of FC.

But most professional associations that deal with autism spectrum disorders, like ASHA, recommend against using RPM and S2C because of the lack of scientific evidence.

One of the reasons ASHA recommends against all of these facilitated techniques is because they don’t guarantee independence.

“The primary goal of speech-language intervention is independent communication, which is a basic human right,” ASHA writes in its position statement against RPM and S2C. “Independence is critical: It ensures that the words, thoughts, and feelings an individual expresses are indeed their own and not the words of another person.”

Most advocates for RPM or S2C rarely explicitly mention FC, which carries stigma in many quarters following the discrediting studies that took place in the late 20th century.

But skeptics see all three methods as essentially holding the same root — in each, a facilitator helps a student spell out their thoughts. None of the three methods are based on independent typing.

But some advocates for spelling have simply taken to rebranding. For decades, Syracuse University’s Facilitated Communication Institute was a sort of ground zero for promoting the technique. In 2010, they changed their name to the Institute on Communication and Inclusion.

John Hussman, a major donor to the institute, explained the name change to a New York Times reporter in 2015. ‘We need to do more on F.C., but we can’t call it that,’’ he said.

Explaining further, he offered this candid remark: ‘‘We have to come up with some other name to fly under the radar and maintain credibility.”

The connection to vaccine skeptics

RFK Jr. in Long Island. Photo credit: "RFK Jr Long Island Rally 06" by Democratizemedia is marked with CC0 1.0.

Nonetheless, S2C got a boost last year from a documentary called Spellers, a high production value film that can now be viewed on YouTube for free.

Spellers follows the lives of eight nonverbal individuals who later start to use S2C to communicate, and its message is not subtle.

It begins with a quote from one of the world’s most famous men who could not communicate without the aid of a device — Stephen Hawking. “Quiet people have the loudest minds,” the quote reads.

From there, we are introduced to the lives of families with nonverbal children who have been denied the capacity to communicate at the level of the average person throughout their lives.

The film is, no doubt, very well made. It’s hardly a surprise that the director Pat Notaro, has produced work as a filmmaker and cinematographer that includes a range of A-list corporate clients like Lowe’s and BMW.

And it’s hard not to sympathize with the families featured throughout the film who struggled to communicate with their children until they were introduced to the specialists who taught them how to use letterboards to communicate with their children.

Early on in the film, we see a mother break down as she sees her teenage son sit and spell out his thoughts. And who wouldn’t? She has finally been given a tool that lets her see her child’s thoughts.

But something missing in the nearly 90 minutes of the film is skepticism. Throughout the film, the advocates for Spellers make sweeping claims about science that are never challenged in any way, shape, or form.

For instance, speech language pathologist Elizabeth Vosseller tells the audience, “Speech is 100% motor, language is 100% cognitive. And you can tell they’re in two different areas of the brain. Speech up here, language is down there.”

The message is a common one among advocates for FC/RPM/S2C. They believe that nonverbal people are essentially cognitively the same as everyone else; it’s their bodies that aren’t cooperating with their thoughts, preventing them from speaking normally.

It’s the view promoted by JB Handley, an activist and father of a nonverbal autistic son named Jamison. Handley’s book Underestimated: An Autism Miracle — which featured the work he did with his own nonverbal autistic child to teach him to communicate via spelling — inspired the production of Spellers.

The Handleys are prominently featured in the documentary as a success story and JB served as one of the co-producers, but the film does not delve deep into their background.

JB Handley is a former private equity executive who in 2005 founded the organization Generation Rescue, a nonprofit that advocates for the idea that autism is caused by environmental factors — especially vaccines.

Handley and Generation Rescue’s message about autism was so simple that an ad they placed in USA Today in 2005 made its main point with just five words: “Autism is preventable and reversible.”

In a sometimes-combative interview with 60 Minutes in 2010, Handley complained that Americans are over-vaccinated compared to other countries. And he seemed to blame vaccination for his son’s diagnosis. When asked by the interviewer whether he’d vaccinate another child of his, his reply was terse.

“I wouldn’t personally vaccinate one of my own children, because my middle son demonstrated clearly that there’s something about our gene pool and vaccines that don’t get [along],” he said.

Although there’s no scientific consensus about where autism comes from, Handley has over the years developed his own grand theory of the condition. In his telling, autism is largely environmental; something we’re exposing humans to is causing the dramatic rise in autism diagnoses we saw in the 21st century. And if the cause is environmental, then recovery is possible as well. The same should hold true for nonverbal autistic children.

Underestimated was released with the support of other prominent vaccine skeptics, like the celebrity Jenny McCarthy (who quickly took on a role at Generation Rescue shortly after its founding) and Robert F. Kennedy Jr. (the former presidential candidate who now serves on Donald Trump’s presidential transition team) and his nonprofit Children’s Health Defense (CHD).

In a virtual book signing with Hadley, Kennedy Jr. described being persuaded by Hadley’s view of autism.

What he told me then, which is, one of the stories told in the book is that this extraordinary discovery that these children have absolutely exquisitely functioning minds and that their difficulty is motor coordination, particularly in small skills. So they aren’t able to communicate not because they're not having very sophisticated and profound thoughts…because they can't force their tongue which has all these nerves and muscles in it to actually articulate that and their bodies are completely out of their control.

When I showed this interview to Boynton, she said that it was a common belief among those who practice FC, RPM, and S2C. But it didn’t ring true to her.

“Many of the individuals we see being subjected to FC/S2C/RPM have little to no physical deficits that would impair independent letter selection,” she wrote to me. “They can, for example, pick up a potato chip off a plate, shave, paint pictures using a paintbrush, even use an iPad independently to select their favorite YouTube videos, but, supposedly, they aren't capable of pointing to a letter on a letter board without facilitator ‘assistance.’'"

Beals told me that RFK Jr.’s argument is an old one circulated among FC proponents. She told me over e-mail:

“Ever since FC first came to the US, proponents of all variants of FC have been claiming that autism is essentially a mind-body disconnect rather than the socio-cognitive disorder that around seven decades of clinical observations and rigorous experiments have shown it to be. Yes, some individuals with autism have fine motor difficulties that affect their ability to manipulate objects in their hands or write legibly or speak clearly, but these motor difficulties are *not* so extensive as to make it impossible for these individuals to communicate without someone holding up a letterboard or holding some part of their arm. There is no evidence anywhere for the sort of mind-body disconnect that FC/RPM/S2C proponents--and RFK Jr!--are claiming for autism (or, for that matter, for any other condition listed in the DSM).”

The lack of scientific basis for what Kennedy was arguing in the book signing did not stop CHD from promoting Spellers throughout its network. (Kennedy has stepped back from the chairman role since running for president.)

CHD’s events manager heaped praise on Spellers in a blog post, and local chapters hosted screenings of the film.

The implications of Kennedy and his network embracing these communications techniques — despite the cloud of scientific uncertainty that surrounds them — are major.

As a prominent member of Trump’s presidential transition team, Kennedy would be able to install people throughout the government who could unlock greater federal funding and official endorsement for these techniques.

For years, advocates for FC and related techniques have advocated for more public funding and government approval for these tools. With RFK Jr., they may have found their most powerful advocate yet.

(I reached out to RFK Jr.’s current spokeswoman, who initially responded to me but never followed up when I asked her about his support for these practices in particular and how he would apply those beliefs to a role in government.)

“The goal is independent communication”

Photo by Leon Seibert on Unsplash

The lack of scientific consensus behind FC, RPM, and S2C raises an important question.

If the skeptics and scientific associations are right and these techniques really aren’t appropriate for nonverbal people, what is?

That’s a question Schlosser has answered during his years working with what is called Augmentative and Alternative Communication (AAC).

There are a range of AAC techniques and devices that nonverbal people have used to communicate. These can include writing, drawing, using gestures or facial expressions, pointing to pictures, or using apps on a tablet.

Think back to the Hawking quote that Spellers began with. The difference between Hawking and some of the children featured in the documentary is that Hawking was never diagnosed with any kind of cognitive disorder; on the contrary, he was known as a genius. He had Lou Gehrig's disease, which degraded his motor functions — meaning the movement of his body. But thanks to an electronic device — an AAC — he had full capacity to communicate with the world.

To Schlosser, the important thing about AAC devices is that they are not dependent on a facilitator who could either physically manipulate someone or use verbal or visual cues to subtly take over authorship from them.

“When we’re teaching initially, we’re doing some prompting there may very well be also some physical prompting, but as soon as possible, we remove those prompts,” he explained. “We fade out the physical guidance and the prompting so that really the goal is independent communication.”

Typically, when Schlosser or another AAC specialist meets a nonverbal client, they’ll do what’s called a feature-matching test.

“We look at the characteristics of the child…and then come up with a match. What’s the best match for this child? And that’s how we would select technology for a trial period,” he said.

Raitt told me that Saoirse has used a traditional AAC device, but that they didn’t see a need for it once they learned about RPM and S2C.

“She doesn’t need to point to a picture because she can spell out the words,” she said. “That’s more I think for people who for some reason couldn’t spell out the words or who haven’t been trained in these methodologies.”

What harm could do it do?

Photo by Elizabeth Villalta on Unsplash

The scientific debates about FC and its variants like RPM and S2C are largely over whether the techniques actually work or not. Are the nonverbal individuals the ones spelling, or at the facilitators unwittingly crafting the messages instead?

But the question of authorship is more than scientific; it’s also ethical. What are the ethical and moral implications if these messages are being wrongly attributed to nonverbal students?

Perhaps the most famous ethical breach was committed by Anna Stubblefield (her case is immortalized in the documentary Tell Them You Love Me, which recently appeared on U.S. Netflix streaming).

Stubblefield was a Rutgers philosophy professor who spent much of her life advocating for the rights of the disabled. That advocacy led her to eventually become a facilitator for a local nonverbal man named Derrick Johnson.

In addition to being nonverbal, Johnson had cerebral palsy and was deemed mentally retarded by local psychologists. Specialists suspected that he would not be able to walk or talk like a typical person. He could occasionally mouth out a simple word, but to give you a sense of how limited his communication was, one way he asked for food was to hit a table or wall and say “eat.”

But Stubblefield had been trained in FC specifically to work with students who can’t use words to express themselves.

“The notion that if somebody can’t speak it must be because they’re too stupid and there’s just nothing in their head…that just is not the case,” she says in the documentary. “It’s not the case. Lacking speech doesn’t mean that you don’t have anything to say. It doesn’t mean that you can’t use language — if somebody can just get you access to a way to do it.”

Stubblefield began to work with Derrick, whose brother — who was neurotypical and not disabled like Derrick — Wesley met her at Rutgers.

Wesley and his mother were taken aback by the success she had.

Stubblefield held Derrick’s arm as he typed out intricate messages on a stationary keyboard device called a Neo.

Not only did he write complex passages about his own life, but he started to write about the world as well. With the help of a local student, he started attending a college class and even did university-level homework.

He also wrote an essay that he presented at a conference to an audience of dozens.

“The right to communication is the right to hope,’’ he wrote in the essay. ‘‘I am jumping for joy knowing I can talk, but don’t minimize how humiliating it can be to know people jump to the conclusion I am mentally disabled.”

Over time, Stubblefield and Derrick grew closer — so close that one day Stubblefield revealed to his mother and brother that he had fallen in love with her. They had been physically intimate.

This revelation shocked Wesley Johnson and his mother and prompted them to look more closely at FC. He dug into the studies that showed the flaws with FC, and eventually his family went to both Rutgers and the police.

Stubblefield was arrested and then later jailed for sexual assault. (She was later released following an appeal and pleading guilty to a criminal sexual contact charge that allowed her to be sentenced to time served.)

Something Wesley says in the documentary stuck with me because I later heard similar from one of the parents I interviewed.

“One of the things that happened with the facilitated communication is that part of the sessions were for us — mom and I — to also practice with him….I would get nothing,” Wesley Johnson testified in Tell Them You Love Me. “I may get two words, but it wouldn’t make sense. And then mom would try and nothing would happen.”

Raitt had told me something very similar.

Her daughter has used all three methods — FC, RPM, and S2C — and she would often attend sessions with her, eager to learn to facilitate these forms of communication herself.

“When I learned RPM and Spelling 2 Communicate, I would go in with the [occupational therapist], learn what to do, read materials, and then practice it at home and then go back into the session and be observed by the practitioners,” she said. “I’m not saying I’m a complete failure. It’s just she doesn’t open up to me consistently and I’ve never gotten a paragraph out of her.”

There is no indication that either Saoirse or Jason have been in any situation as perilous as Derrick Johnson was — where a facilitator was eventually charged for criminal sexual conduct after they used a dubious communications method to gain consent.

But Schlosser told me there are other ethical considerations.

If we use communications methods where we can’t be sure that it’s the nonverbal person who’s authoring the messages, he argued, there are inherent problems.

“If it’s not the child who is doing the talking, that would be horrible,” he said. “I mean, you’re basically supplanting the voice of the child with an adult’s voice who is a neurotypical person, and you’re totally robbing the child of his or her agency.”

Advocates for FC/RPM/S2C are quick to use the language of social justice — Handley accuses ASHA of “ableism” and a long-time motto of proponents of these techniques is to “presume competence” rather than assuming that nonverbal people have cognitive deficiencies.

But Schlosser recently coauthored a paper with a humanist scholar who has done work on colonialism that argues that using improper communications techniques could be a form of ventriloquism that harkens back to colonial oppression. Just as people colonized by major powers had their destiny taken from them, so were individuals like Derrick Johnson who were shuttled around the country to speak at conferences when there was no reliable information that suggested he even wanted to become an activist for nonverbal people.

A media that is failing to be skeptical

Photo by Elimende Inagella on Unsplash

In my months of research on this topic, I spent hours combing through mass media and analyzing how it portrayed techniques like facilitated communication, rapid prompting method, and Spelling 2 Communicate.

What I found, more or less, was that these techniques are often presented as miracle cures with little or no skepticism.

Take Myung-Ok Lee’s Salon op-ed. After reading from top to bottom, the reader comes away with the impression that she’s using a tried-and-true communication method with Jason and that criticisms are all abusive or bullying — rather than based in concrete science.

I wrote to Salon executive editor Andrew O'Hehir (full disclosure: I’ve contributed to Salon in the past but haven’t written anything there for years). I asked him whether it might be appropriate to append some kind of scientific skepticism to the piece so that readers know that there is some reason to doubt the effectiveness of what Jason’s parents are using with him.

O’Hehir responded to my inquiry by first telling me that “her article is a personal essay published in the Culture vertical and by definition reflects her subjective experience.”

But he did agree to add one paragraph to her essay. I have reprinted it below:

For the record, we are not practicing the technique known as “facilitated communication,” which has caused some controversy. Jason’s pointing to a letterboard fits broadly with the Rapid Prompting Method invented by Soma Mukhopadhyay, who has worked directly with Jason in the past. I have also received parent training in that method. Jason sometimes uses an augmentative and alternative communication or AAC device, but it is not his preferred way of communicating — as he can now tell us via the letterboard. These are Jason’s words: “I can write on my own. It is is me writing, although I sometimes like getting input on my arm to help it get oriented In space. I do not appreciate having my intelligence called into question.”

I responded to O’Hehir that this did not really address my concern. I noted that Myung-Ok Lee admitted to me that she herself was not strictly following RPM protocols by touching his arm and that RPM itself is not seen as a valid communication method by ASHA.

I pointed out to him again that if you watch the videos of Jason, you can see that he’s often not even looking at the letterboard as his father helps move his arm. I noted that vaccine skeptics like RFK Jr. had been promoting this method — and Salon has been excoriating Kennedy’s views on autism science. Finally, I also asked him if it’s really defensible to publish scientifically controversial or dubious claims simply because they are in the context of a personal essay. Would he feel the same way about a parent claiming that a vaccine harmed their child?

O’Hehir was unmoved by my reply. I’m publishing his reply in full below:

My only further response would be that the hypothetical example you cite (about the MMR vaccine) sounds categorically different to me. More to the point, since it's entirely hypothetical I can't evaluate it in the abstract.

Although I can't see what basis you would have for concluding that Marie's account is not truthful, you are entitled to that opinion. I would add that I don't see guilt by association as a particularly useful standard. If I find myself in accord with RFK Jr. on some area of politics or policy, it does not follow that I share his views across the board.

Needless to say, none of this served as a very satisfying response to me. When we’re talking about communications methods that have been implicated in severe abuses — like in the case of Janyce Boynton and Derrick Johnson — it’s worth the media fully interrogating their worth. Salon doesn’t seem interested in whether Jason is actually communicating or not; they seem to just be taking his mother’s word for it.

But at least they were interested enough to reply. In my journey through this world, I found that a wide range of mainstream outlets had promoted content validating these forms of communication — everything from Teen Vogue to Arizona Public Media (those two did not reply to my inquiries at all). Apple even cut a commercial featuring a nonverbal teenager using RPM to deliver a graduation speech.

Search through the news yourself, and you’ll probably find a news outlet featuring a nonverbal autistic child who spent a decade or more of their life being unable to communicate who is suddenly writing high school or college-level essays. And all of this is presented with little to no skepticism. It would be hard to find another topic where so much of the major media has so uncritically promoted a pseudoscientific method.

Our obligations to our loved ones

Photo by Rodolfo Sanches Carvalho on Unsplash

As critical as they were of facilitated communication and the variants that have popped up in the past couple decades, every autism researcher and scientist I spoke to was personally sympathetic to the parents who are doing everything they can to get help for their nonverbal children.

“The two Columbia professors have a way of communicating now with their son…so they get excited about this method, because it's seemingly working, and we cannot blame the parents for it. I think that's the that's the worst approach we could take, because they're really just looking for a way to communicate with their child,” Schlosser told me.

One of the parents interviewed in Spellers says, “When a child is communicating, we don’t need the science…I don’t care about the science.”

Who could possibly not see themselves in their shoes? Of course a parent who has never heard more than a few words from their child would be overjoyed to see them writing essays, authoring books, and even giving graduation speeches.

All of these accomplishments have been claimed by students who’ve used FC/RPM/S2C. And I imagine that the pressure to reach for these miracles is even greater on parents who are accomplished themselves.

“Highly educated parents are actually, I think, more prone to fall for it, than less-educated parents because they have a greater need for their kid to be highly literate,” Beals told me.

Indeed, last week I saw that Jason’s parents took him to Amherst University, where he will be sitting in on a class.

“Jason is officially auditing a literature class and the prof invited him to come sit in - he really enjoyed it and got to participate- he had done great insights on Frank O’Hara’s nyc poems,” his mother wrote on Instagram.

As an accomplished author herself, I can see why Marie-Ok Lee wants the best for her child. She would probably be unsatisfied even if he communicated just like the average neurotypical person does. I’m sure she wants him to exceed where she got to in life — with Ivy League teaching appointments, novels, and awards under her belt.

But what if that’s not what Jason wants? The question of authorship that these forms of communication raise are simply too difficult for me to emulate O’Hehir and cease asking questions about what looks like a miracle.

Without independent communication — free of someone holding your arm or cueing you with a letterboard or stencil — it’s almost impossible to say that what you’re really saying are your thoughts. How will Jason or Saoirse or anyone else using these techniques be able to reliably say one day that they fell in love and want to get married to someone or have families of their own?

The parents I spoke to for this piece didn’t appear to have a doubt in their mind that these techniques really work. But when faced with the same high-risk dilemmas that Derrick Johnson’s family faced, wouldn’t they want to be 100% sure that the messages being produced by their children are authentic?

I also understand the skepticism many parents have towards the scientific establishment. This is an establishment that has become increasingly politicized, and during the COVID-19 pandemic we all saw scientists and scientific organizations make bad calls while being reluctant to admit their mistakes.

The arrogance with which we were told to “follow the science” — without acknowledging that science is a process more than a set of facts and that we should always be willing to question the current consensus — alienated thousands of Americans.

But skepticism is only really a virtue when it’s applied broadly; when applied narrowly and selectively, it can turn into a vice.

Take Handley, whose criticisms of the pharmaceutical industry, medical establishment, and government agencies often imply that they are refusing to question their beliefs because of financial or other forms of self-interest.

This, for instance, is how he describes the American Academy of Pediatrics and the Centers for Disease Control:

Is the AAP a benevolent, objective advocate for your baby? No, they are a trade union for pediatricians, and pediatricians generate the majority of their income from, you guessed it, vaccines. What about the nation’s keeper of the vaccine program, the CDC? Do they give parents objective information about the risks and benefits of vaccines? Or do they feel entitled to scare the heck out of the public to induce them to get vaccinated?

Why do these arguments apply only to advocates for vaccines? Is it not true that Soma Mukhopadhyay has gained fame and made a living by inventing her own form of therapy? A 2020 filing from her nonprofit shows over $142,000 in income. And paid time with facilitators across the country can easily cost upwards of $100 a session.

In interviews about her critics, Mukhopadhyay hardly shows any scientific curiosity or skepticism about what she’s doing. These comments from a 2021 interview show how she thinks about skeptics of RPM:

Criticism is the choice to cover a failure. When other therapists criticize, it gives me feedback that something we are doing is correct which is creating this motivation to criticize.

I see criticism as medals, not as scars. Criticism comes with its own expiry date. Beyond a point the criticism – vocabulary gets exhausted and it becomes boring and redundant.

As critical of Handley is of the scientific establishment for promoting vaccines, which have mountains of scientific data behind them, he offers no such “objective information about the risks and benefits” of using FC, RPM, or S2C in Spellers. If viewers want to know about cases like those of Boyton and Stubblefield, they have to go on their own journey — do their own research, so to speak — because Handley and Spellers make no effort at all to be objective. Spellers doesn’t tell you about the case of a woman who killed her own child because she believed that he was spelling out that he wanted to die.

I’m sure some people are reading this article and asking themselves what I would say to parents or caregivers who want the best for their nonverbal loved ones. Why should they be satisfied with AAC devices that offer their children a simplistic form of communication when FC, RPM, or S2C could have them writing books and treatises?

I think this all comes back to our obligations to our loved ones.

I, too, know people with difficult conditions and ailments. If someone approached me with the possibility of a miracle cure that could wipe these maladies away, I’m sure I would ask them how fast we can get started.

But I think back to a book I read and reviewed in 2021 by Freddie de Boer that argued that the main factor in determining human intelligence is genetics. Some people truly are born smarter than other people. But de Boer, a committed Marxist, makes the case that this doesn’t mean that they are any less worthy of respect or dignity.

If it turns out that we never find the evidence that facilitated spelling works as an authentic method of communication for nonverbal people and this form of pseudoscience dies out, it doesn’t make those people any less human. They still deserve our love and support.

I was somewhat stung by the paragraph added to Myung-Ok Lee’s Salon essay — where Jason, in his mother’s telling, suggested that skeptics were questioning his intelligence.

I am not questioning Jason’s intelligence nor his worth. In the videos his mother posts, he comes across as courageous. I can’t imagine having his level of bravery and determination to go through life overcoming the obstacles he has.

But I am absolutely questioning the validity of a practice that has to this day never been proven to be an authentic form of communication for anyone who could truly benefit from it (such as nonverbal people like Jason and Saoirse).

I am doing so because that’s the job of a reporter. Our job is to reject orthodoxies from both right and left, from the medical establishment or from vaccine skeptics and New Age self-styled therapists. Our job is to report the truth, and the only apology I’d make is if I ever stopped seeking it.