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Key points
- The Autism Society of America recently platformed a technique called facilitated communication (FC) in an email and video.
- Three decades of controlled studies have shown that the output of FC is controlled by the facilitator, not the disabled user.
- The autism community must reject pseudoscience and unite behind the need for evidence based treatments.
On April 2, the Autism Society of America (ASA) featured a speller in their mass mailing celebrating “Autism Acceptance Day.” While many people with varying disabilities type as their primary method of communication, the reliance on another person holding a letter board—as seen in one of the images and a video posted on YouTube—marks this interaction as a clear example of facilitated communication (FC).
FC is an intervention that was debunked in the 1990s when dozens of controlled studies demonstrated that the output of the communication was unconsciously controlled by the facilitator, not the disabled person. ASA was an early supporter of FC when it was introduced to the United States in 1989.
I understand why ASA was fooled then—everyone was. FC tapped into one of the deepest hopes of parents of profoundly autistic children, as well as the providers drawn to work with them: that they aren’t really cognitively impaired. That all the things that most people consider important elements of a good life—meaningful work; romantic relationships; engagement with the world through travel, literature, history, and political discourse—won’t be denied them after all.
As the parent of a 24-year-old, profoundly autistic son, I get it. There is nothing I've ever wanted more than for that to be true about Jonah.
And at first, there was little reason not to believe. There was no research suggesting otherwise, and it seemed so unlikely—as FC users began producing poetry and even treatises on disability—that a light touch on the hand, wrist, or shoulder was sufficient to direct such sophisticated messages.
It wasn’t until kids started accusing their parents, through FC, of sexually abusing them that a judge asked the question that should have been asked from the very beginning: How do we know this is real?
A Scientific Consensus Emerges
These cases finally catalyzed a thorough investigation into authorship in FC, which is actually very easy to test—all it involves is asking users to produce information unknown to their facilitators. And what every study found was that not a single FC user was able to do this.
One review summarized that, out of 19 controlled studies done before 1999, there were zero successful trials out of almost two hundred. Zero. In response, many practitioners and users of the current FC iterations Rapid Prompting Method (RPM) and Spelling to Communicate (S2C) have refused to participate in controlled studies—even while their founders, Soma Mukhopadhyay and Elizabeth Vosseller, claim success rates of 100 percent.
There are many things about FC that baffle me personally, but one of the biggest is that this refusal to test didn’t end the debate right there. That’s not how science works, and the autism community needs science. There’s no other way to determine which of the many, many alternative treatments so prevalent in the autism community might really be effective, which ones are just a waste of money, and which are actually dangerous.
Dangerous Pseudoscience
FC may seem harmless, but I argue that it actually poses tremendous harm to profoundly autistic people. Not just because of the five dozen false abuse accusations—even though some of these ripped families apart, sending parents to jail and kids to foster care. Not even because of the tremendous cost—about $30,000 a year per student, money (and instructional time) that could be spent on evidence-based interventions that might actually improve independent communication skills.
No, I believe that the greatest harm is that FC hijacks the actual voices of profoundly impaired people (whether typically expressed through spoken words, gestures, or affect) and substitutes instead the voices of their non-disabled facilitators. And I just do not understand how some advocates who claim to support autistic people and to amplify their voices care so little about the unintended ventriloquism that is exposed when FC is tested under controlled conditions that they are unwilling to take precautions to prevent it.
There is much conflict in the autism community. But I would think that if there was one thing we could all agree on, it is the need for evidence-based treatments for autism. They stand between very vulnerable people and bleach enemas, chemical castration, or—and I just heard about this troubling trend last week—toxic doses of ivermectin that cause headaches, nausea, and seizures.
Over a million profoundly autistic Americans in desperate need of meaningful interventions—not only for communication, but for aggressive and self-injurious behaviors, sleep, epilepsy, gut issues, and so much else—need the community to be on the side of science. I hope that ASA won't be fooled again.
References
Lutz, A.S.F. (2023). Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates that Affect Them Most. NY: Oxford University Press.
