When I pick up my son Danny, who is 30 and on the autism spectrum, from the village where he lives during the week, one of the first questions he asks is whether he will type with Daniel that evening.
Daniel is Dr. Daniel Orlievsky, a professor and director of an international postgraduate diploma program in clinical practice and research in the autism spectrum at the Catholic University of Buenos Aires. A psychologist and researcher, he specializes in helping children and young adults on the autism spectrum learn to communicate through typing.
That may set off a red flag in your mind because of recent media reports debunking scams involving a technique called Facilitated Communication (FC) and its variants.
The best-known of these are the Rapid Prompting Method (RPM), Spelling to Communicate, and Spellers, whose practitioners claim that minimally verbal people on the autism spectrum can use these methods to write brilliant books or attend university.
In the FC method, a so-called facilitator holds a disabled person’s hand and moves it over a letter board or keyboard to point to letters, supposedly spelling out the words he or she wants to say or write.
Often, the disabled people do not look at the board at all. With RPM, Spelling to Communicate, and Spellers, the facilitator does not hold the person’s hand but moves the letter board or keyboard; often, the person with autism does not look at the board.
But FC/RPM bears no relation to what Orlievsky does with his patients, including Danny. Danny sits and types completely on his own about what interests him; mainly ceiling fans, trains, buses, bagels, and cats.
FC/RPM and its variants would seem to have been debunked thoroughly in the ’90s, but they keep coming back, like a movie villain. Every day, my Facebook feed seems to show another autistic genius using FC or the RPM method to attend university, write a book, or publish articles.
But there was an especially dramatic moment recently in which an RPM facilitator making claims was finally exposed to public scrutiny and drew widespread skepticism.
Woody Brown, a 28-year-old minimally verbal man on the autism spectrum, is credited with writing a novel, Upward Bound, with the aid of RPM administered by his mother, Mary Brown. In April, they appeared on NBC’s The Today Show.
Host Jenna Bush Hager praised his novel, about young people on the autism spectrum, saying it was “deeply heartfelt and moving,” and chose it for her book club. “The reason it’s so authentic is that the author understands autism firsthand,” she said.
This last claim is not in dispute, but the issue of who really wrote the novel is, and was raised in The Atlantic, by Daniel Engber, after the Browns’ TV appearance. Many other media outlets followed suit.
What emerged from their coverage was that in a recorded interview with Woody and Mary that aired on The Today Show after Hager’s introduction, Woody’s typing bore no relation to what he actually spelled out – contradicting Mary’s claims.
At one point, Mary, who has a master’s degree in English literature from Northwestern University, said he typed: “To finally be in the room where learning was happening, I felt like I was in heaven,” but if you slow down the footage just slightly, Woody’s finger touches the letters: Tobgdhi nvza.
Not only did Woody attend high school and college at UCLA (where he graduated with highest honors) with his mother moving the letter board for him, he got an MFA in writing at Columbia University, and signed a two-book deal from Hogarth, an imprint of Penguin Random House.
There are many other such cases of autistic people attending university and even publishing books using FC/RPM. Woody’s story is simply the latest of many.
The skeptics weigh in
This might seem like a small issue, affecting few people, but the media’s generally uncritical reporting on FC/RPM shows how easily the press can be manipulated. And if it can be manipulated regarding one subject, it can be deceived in many other areas as well.
Psychologist Stuart Vyse, writing in the magazine Skeptical Inquirer, zeroed in on the main problem raised by the saga of Woody and Mary.
“This young man was brought on The Today Show to mark Autism Awareness Month,” he wrote, “and yet, in a cruel irony, everything about this case suggests that his true nature was not acceptable to his parents. He has been required to perform a pantomime in the service of an appealing fantasy.
“Worse yet, like all victims of Facilitated Communication, he has endured years of useless tapping on letter boards that could have been spent in more appropriate instruction. Rather than learning to live as independently as possible, Woody remains dependent on his mother.”
At least Mary allowed herself and her son to be photographed, which revealed the disparity in where Woody’s finger moved and where she said it moved.
Many parents or caregivers who claim they have helped disabled people write articles or books through FC/RPM have refused to be filmed, or even to take the simple test that proves who is really choosing what to say: The child who is supposedly typing is shown a picture the facilitator cannot see and asked to type what it is.
In the vast majority of cases that ever got to this stage, the whole story fell apart. There was even an episode of Law & Order on this theme in the ’90s. But most facilitators refuse to take this test, for obvious reasons, often saying they’re offended that anyone would ask them to.
In the most tragic cases, which are numerous and well-documented, facilitators claiming to type what a disabled person is saying have made accusations of abuse against parents and other caregivers; the accused were prosecuted and later exonerated when the FC/RPM turned out to be fraudulent.
Conversely, and even more horrifically, some facilitators have used FC/RPM as a way to initiate romantic and sexual relationships without the genuine consent of the person who is supposedly communicating. Multiple court cases showed that FC/RPM was an abusive sham.
Danny, and the Phaedrus Approach
All of which brings me back to Orlievsky and the real work he and his team do to help people with autism communicate, using the Phaedrus Approach, which is the polar opposite of FC and RPM.
I met Orlievsky a decade ago, when he came to Israel to give a series of lectures on how he teaches people with autism to communicate by typing. I thought it might help Danny, because he has always been interested in letters and words, although at school he received little formal academic education in Hebrew, and almost none in English.
But he learned the alphabet after watching Sesame Street once, and can identify hundreds English words simply because he is interested in looking at words in books and on signs.
At the schools he attended, they spent more time teaching other skills rather than academic ones, focusing on what are called Activities of Daily Living (ADL), which are considered necessary for people with autism to live as independently as possible.
I could understand their decision, but I longed to find a way for Danny to express himself through writing.
As a writer, I know that the part of my brain that controls writing works differently from the part that controls speech, because when I write, I often have ideas about a topic that do not come to me when I am speaking about it. I felt part of Danny’s brain might also work this way.
Orlievsky met Danny on this trip to Israel, and the two hit it off instantly. He agreed that Danny might benefit from learning to type with his method.
After he returned to Argentina, I searched for someone in Israel who might be able to work with Danny, but didn’t find anyone. Perhaps because of the negative publicity surrounding FC/RPM scams, there is a shortage of psychologists and teachers who have learned this approach and who are willing to do the hard work of teaching people on the spectrum how to communicate through typing.
Fast forward to 2020. Orlievsky contacted me to see how Danny was doing during the pandemic. He suggested that Danny might enjoy working with him via Zoom, which we all had begun to use. I jumped at the opportunity, and Danny has been having Zoom sessions with Orlievsky ever since. His communication skills have slowly but steadily improved during the past six years.
There are major differences between Orlievsky’s Phaedrus Approach, named after the Platonic dialogues on writing and reason, and FC/RPM. Phaedrus has just one aim: that the person with autism learns to express him or herself through writing.
Orlievsky’s students sit at a keyboard on their own. No one touches or manipulates the hand of the person with autism.
No one touches or moves the keyboard but the autistic person. The typing may go slowly, but that’s all part of the process. In his sessions, Danny uses the hunt-and-peck typing method and typically types between 50 and 100 words per session. He loves all public transportation, so he types about trains and buses, our weekend plans, songs he likes, and a cat we once had.
His typing is filled with grammatical mistakes, but it doesn’t matter, because it isn’t about grammar. Sometimes he spells words phonetically; other times, he asks me how words are spelled. I tell him, and he types the words himself. Everything he tells Orlievesky comes from his heart and is important to him.
He does not type about literary or philosophical concepts, and he does not praise me extravagantly the way many of these purported FC prodigies often compliment their caregivers. In fact, he doesn’t write about me at all, except to mention that we had chocolate cake for my birthday.
Danny’s writing is about Danny, as it should be. I sit nearby and help him focus when his attention wanders, but he does all the typing himself.
Orlievsky and his team have spent decades trying to show the autism community that reliable and verifiable literacy is possible for people on the spectrum. But the enormous media coverage and support of FC/RPM and similar techniques have not made it easy for them.
People enjoy a good story, and they like the idea that a person who can communicate verbally only through uttering a handful of one-syllable words is actually capable of writing sentences like ones that Woody Brown (through his mother) supposedly typed on The Today Show.
These included: “I never thought there could be a life like this. I had no way of letting people know who I was. My intelligence was like the rock pushed up the hill by Sisyphus. I could never get it to the top.”
It’s a common feature of this kind of FC/RPM that the autistic person employs sophisticated references, such as the Sisyphus myth, which are used to prove the facilitators’ contention that autistic people are always listening and pick up on everything.
But people with autism who, after much instruction and practice, type simple sentences about their daily lives and interests, the way Danny does, don’t present the same kind of drama as a minimally verbal person allegedly writing an entire novel, getting an MFA, and referencing Greek mythology. Danny will type, “I like ceiling fans because they go fast.”
Because many parents are interested in helping their children learn to communicate through writing but are skeptical of FC/RPM, I asked Orlievsky to explain how his Phaedrus Approach – also known as Language Habilitation through Writing, which he has developed over the past 30 years – works.
“The idea is for non-speaking autistic individuals, synchronous writing with the assistant is a pathway for language to emerge, not as a consequence of [their] already possessing it, although it is possible that in some cases it may be present,” he said.
“The initial assessment consists of a meeting where the person is shown a series of pictures to see if they can point to what is asked. If they answer correctly, the next step is to determine if they can recognize words or letters.
“This tells us if they have some level of receptive language comprehension and potentially some form of literacy.
“Depending on their comprehension, the literacy process begins. If the person cannot answer any questions, we try to begin the literacy process with other preliminary strategies. Depending on their age and individual profile, we will work with apps so they can begin the learning process, discriminating shapes and colors, etc.”
It may take some time before they begin to write, and some profoundly autistic individuals may need “motor modeling,” which is not the same as the “physical support” used in FC.
The difference? “Physical support” in FC is actually moving the person’s hand while they are supposedly searching for the letter they want to press; “motor modeling” involves teaching the letters and helping the person gradually learn to type independently.
For example, in motor modeling, if the subject has trouble finding the key they want to press, an assistant might suggest that they look at the entire keyboard, without touching it at all. People on the spectrum who are first learning to type might only look at one section of a keyboard, because the process is so new to them.
“Fine motor skills usually improve significantly in this process, and the ultimate ‘non-waivable’ goal is ‘fully independent writing’ with the keyboard or tablet placed on a table or desk,” Orlievsky said. “This way, there is no doubt about who is writing the text.”
The next step, he said, is helping the individual communicate what is important to them.
“The approach is always based on the person’s interests, and writing begins by copying words related to those interests. For example, if the person likes ceiling fans” – here he was talking about Danny – “we will try to offer them a picture of those objects so they can copy that word.”
There is a scientific basis for all he does with his patients, he explained: “Just as Einstein speaks of space-time as a continuum, the same should apply to reading and writing, since one process cannot be conceived without the other.
“In our understanding, the same occurs when accessing written text: increased brain connectivity leads to improved comprehension,” Orlievsky said.
“From this, the improved ability to communicate allows for another qualitative leap in language and, consequently, in the psychic structuring.
“In our experience, the changes observed in areas of behavior, communicative intent, flexibility, improvements in attention span, joint attention, etc., are remarkable.”
He continued: “This approach fits in with Einstein’s space-time continuum by breaking down the ‘I speak first, then I write’ separation.”
While some have theorized that spoken communication must precede written communication, Orlievsky challenges that overall general conclusion.
“For non-speaking or minimally speaking individuals, the process [of moving from spoken to written language] is reversed. Traditional methods assume that oral language must be developed before writing can be taught…
“The Phaedrus Approach proposes that writing is where language is born… By typing with the assistant, the person is simultaneously reading, interpreting, and producing. Reading doesn’t precede writing; it sustains and shapes it.”
Spreading the Phaedrus Approach
In addition to working with schools, hospitals, and clinics in his native Argentina, Orlievsky has consulted in the US, Brazil, Chile, and Serbia. The Phaedrus Approach has been used at the Imagine Academy in Brooklyn, a school for people with autism, since 2018.
Elisa Chrem, principal of the Imagine Academy, said, “For all the students we have observed here [who are learning with the Phaedrus Approach], we see sustained shared attention; increased engagement; calm, regulated students; a lot of turn-taking going on; increasing circles of communication… We want to increase the levels of complexity when the students are ready for it.”
Her words illuminate how this gradual process unfolds and how beneficial it can be.
Asked why writing matters for non-speaking people with autism, Orlievsky said, “Writing doesn’t come after understanding. It comes from understanding while reading and writing.”
“It is the synchronicity of writing and speech as a means of psychic structuring. Time dilates. There is no ‘I think first, then I write.’ Thinking happens while one reads and writes,” he said.
This aligns with my experience as a writer, and is why I feel that writing with Orlievsky has unlocked doors in my son’s mind.
Although Danny is already 30, he continues to develop and learn. I can see that, during the years he has been typing with Orlievsky, he has learned to communicate better verbally, as well as through writing.
And if what he wants to communicate through writing is that he is excited that he will see a large ceiling fan in the store where we buy bagels, after we ride on the No. 78 bus, that’s what Orlievsky wants him to type, and that’s what I want to read.
Danny, who is bilingual, is keenly interested in the different languages he hears around him, such as Hebrew, English, Russian, and Arabic, all of which he may hear on a single day.
When I told him Orlievsky speaks Spanish, he asked how it sounded, and he recently learned three Spanish words. He also wanted to know where people speak it.
Now that he knows that Spanish exists, and where it is spoken, he sometimes finds clips of his favorite songs in Spanish online.
When Danny finished typing with Orlievsky last week, he told him, “adios” and later, he listened to “A Dream is a Wish Your Heart Makes,” from Cinderella, in Spanish.
Danny’s unpredictable, but very real development, is fascinating to me, and more exciting than any words I could put in his mouth.
I am happy and grateful that Orlievksy’s Phaedrus Approach is helping him broaden his ability to express himself.
More people need to know about this genuine method that teaches people with autism how to communicate, so that further research can be done on it, and people with autism or other conditions who have minimal speech can learn language and communication through writing.