As the mother of a profoundly autistic son, now 27, I have wished for so many miracles over the years: that Jonah was not really as cognitively impaired as he appeared; that one of the countless treatments we tried would be transformative; that he would one day go to college, pursue a meaningful career and do everything parents want their children to do. So I understand the allure of facilitated communication and similar methods, which promise to grant those wishes with a simple letter board or keyboard.
Facilitated Communication, or F.C., is an intervention in which profoundly autistic individuals spell messages with the physical support of a nondisabled facilitator, who generally provides direct touch to the speller’s hand, wrist, elbow or shoulder. There are variants of F.C., such as Spelling to Communicate and the Rapid Prompting Method, in which the facilitator typically holds a letter board and offers prompts. Grouped together, these methods are often referred to as “spelling.”
Such facilitation, proponents claim, unlocks hidden literacy inside people previously considered severely cognitively impaired. In 2021, Robert F. Kennedy Jr. interviewed the father of a speller who wrote a book with his son. Discussing his takeaways from the book, Mr. Kennedy says the son “learned to do calculus in essentially a day.” According to “The Telepathy Tapes,” a popular podcast that first aired in 2024, there are spellers who can read their facilitators’ minds.
Here’s the thing about F.C., though: The science doesn’t back it up.
There are augmentative and alternative communication methods that work for many nonverbal or minimally verbal individuals: simple forms of sign language, various digital applications and the Picture Exchange Communication System — which employs small cards with images or icons primarily to convey requests. But communication produced by F.C. and its counterparts isn’t autonomous; it’s influenced by facilitators.
F.C. came to the United States from Australia in 1989 and was embraced by many parents and educators as an almost miraculous tool that allowed them to access the intact minds of their children and students. Rigorous testing was prompted in part by a string of cases in which spellers falsely accused their parents or caregivers of abuse. In some of these cases, innocent people were incarcerated and vulnerable children were placed in foster care. In one prominent case, in 1991, school officials reported that a 14-year-old girl had said, through F.C., that her father had repeatedly sexually assaulted her. It was this crisis, and the demand by judges that testimony given through F.C. be validated, that led researchers to conduct scientific tests of authorship — asking, in effect, who was controlling the communication, disabled spellers or nondisabled facilitators?
Over time, many such studies have reported essentially the same thing: Spellers could not communicate information unknown to their facilitators. A 1995 study of seven adults in the Journal of Applied Behavior Analysis found that spellers “typed the correct answer only when the facilitator had access to the same information, never typed the correct answer when the facilitator had no information or false information and typed the picture or activity presented to the facilitator when it was different from the one experienced by the client.” In other words, when spellers and their facilitators were shown the same picture — for instance, a telephone — the speller successfully spelled out “telephone.” But when the speller was shown a telephone and the facilitator was shown a different picture — for example, a hat — the subject spelled out “hat,” which is what the facilitator saw.
A 2014 Finnish analysis concluded that messages produced using F.C. “revealed a large degree of facilitator influence on the content of the messages produced.” A review of this extensive literature published in 2014 found “unequivocal evidence for facilitator control: Messages generated through F.C. are authored by the facilitators rather than the individuals with disabilities.”
Virtually every relevant professional organization — including the American Speech-Language-Hearing Association, the American Psychological Association, the American Academy of Child and Adolescent Psychiatry and the American Association on Intellectual and Developmental Disabilities — has issued position statements opposing F.C. Some have also specifically issued statements recommending against the use of variants like the Rapid Prompting Method.
Evidence of facilitator control doesn’t represent malicious intent. Rather, 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).
Despite these consistent findings, support for spelling has persisted. In a January report, one spelling proponent estimated that the number of trained spelling practitioners was around 1,000, up from just a handful that she knew of a decade ago.
Spelling proponents are pushing for government backing: 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.”
Sylvia Fogel was recently appointed to head the Interagency Autism Coordinating Committee, which advises the federal government on its five-year, $2 billion budget for autism services and research. In a March interview, she said that among other things, her committee will “be focused on investigating or hoping to recommend more research around novel communication methods like typing and spelling for those with minimally verbal or nonverbal autism.”
This all matters because resources poured into pseudoscientific methods like facilitated communication obviously can’t also be directed toward the most intractable problems profoundly autistic people face, including self-injury, seizures, wandering and, yes, communication challenges.
Upward of 25 percent of autistic children are nonverbal or minimally verbal, and while many successfully learn to use Augmentative and Alternative Communication systems, not all do. Developing tools to enable all autistic people to authentically and independently communicate their needs and preferences is obviously a top research priority for the profound autism community.
But it’s not all about money or opportunity costs. The most serious harm created by F.C. is that it deprives severely cognitively impaired individuals of the limited control they have over their own lives.
In general, the pro-spelling view seems to be that what is spelled trumps what is independently communicated by the speller through speech (because yes, many spellers can speak basic words or phrases) or behavior. You can find videos online that show agitated spellers pushing letter boards away while their facilitators appear to ignore their protests.
I cannot imagine how frustrating it must be for profoundly autistic people to be denied the ability to communicate their actual needs and preferences. I think about my son, who constantly asks to watch “Sesame Street” and visit the water park, and how miserable he would be if I made him watch “60 Minutes” and took him to museums instead, based on a facilitated response.
Too many people are struggling. It is incumbent on all stakeholders — including autistic people, their families, researchers, clinicians, policymakers and the public that is supposed to hold government accountable — to demand that resources are directed toward evidence-based interventions, not on facilitated communication, which offers almost irresistible, but false, hope.
Amy S.F. Lutz is the vice president of the National Council on Severe Autism. Her books include “Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most.”
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