As you know, autism runs the gamut between people who functional pretty normally to those who can barely function, require round-the-clock care, and cannot read, write, or speak. It’s often assumed that this is a “spectrum”: that is, a disorder with a unitary developmental/genetic cause that has various degrees of expression. Thus some groups that hope to ameliorate autism assume that the near-normal end of the spectrum require treatments similar in kind but not degree to those who show “profound” autism. Others think that the treatments needed are very different. The high-functioning people with autism can express what they want or need, but what about those who can’t express themselves?
This is the subject of the new Nature article shown in the second screenshot below. It’s also the subject of a critique of one part of the Nature article—a critique that appeared in Skeptical Inquirer (SI). SI is the well known magazine from the Committee for the Scientific Investigation of Claims of the Paranormal (CSICOP), itself an offshoot of The Center for Inquiry.
SI and SCICOP have devoted themselves to debunking woo, and their SI piece, written by psychologist Stuart Vyse, takes issue with one brand of woo historically involved with autism research: facilitated communication.
Facilitated communication was a method that, people thought, could allow profoundly autistic people who couldn’t read, write, or talk to communicate with others. The assumption was that with some assistance, the hidden verbal and mental abilities of profoundly autistic people could be revealed. This involved people helping the severely autistic people to “write” by using various devices. And lo, a trove of hidden thoughts were revealed. Sadly, it was eventually found that the “helpers” were actually prompting the autistic to communicate, and it was pretty much a scam, although perhaps an unwitting one. (It’s the equivalent of a Ouija board, where people think that they are not guiding the pointer but really are.) Here, let Wikipedia describe the method:
Facilitated communication (FC), or supported typing, is a scientifically discredited technique that attempts to aid communication by people with autism or other communication disabilities who are non-verbal. The facilitator guides the disabled person’s arm or hand and attempts to help them type on a keyboard or other device.
There is widespread agreement within the scientific community and among disability advocacy organizations that FC is a pseudoscience. Research indicates that the facilitator is the source of the messages obtained through FC, rather than the disabled person. The facilitator may believe they are not the source of the messages due to the ideomotor effect, which is the same effect that guides a Ouija board. Studies have consistently found that FC is unable to provide the correct response to even simple questions when the facilitator does not know the answers to the questions (e.g., showing the patient but not the facilitator an object). In addition, in numerous cases disabled persons have been assumed by facilitators to be typing a coherent message while the patient’s eyes were closed or while they were looking away from or showing no particular interest in the letter board.
Facilitated communication has been called “the single most scientifically discredited intervention in all of developmental disabilities”. Some promoters of the technique have claimed that FC cannot be clearly disproven because a testing environment might cause the subject to lose confidence. However, there is a scientific consensus that facilitated communication is not a valid communication technique, and its use is strongly discouraged by most speech and language disability professional organizations. There have been a large number of false abuse allegations made through facilitated communication.
The article is remarkably strong for Wikipedia, and has a long section on documenting the flaws of facilitated communication.
At present, though, the method is still used, and is an important part of the Nature paper. Now it’s often done with the “facilitator” holding up an alphabet board and having the autistic person point to letters that, they say, give a message. The thing is that the boards are always held up by a facilitator, who can move them around, and the autistic person can look at the “facilitator” for approval. They never do it with the alphabet board flat on a table and the facilitator out of view of the subject. Look at this video using the kind of facilitated communication touted in the Nature article, and you’ll see the issues. The facilitator moves the board around, and the subject looks at times at the facilitator, seemingly seeking approval. And it’s hardly credible that someone who cannot either write, read, or speak could nevertheless convey complex messages this way. But you don’t have to guess: experiments have debunked the whole method.
In the article below (click to read), psychologist Stuart Vyse calls out Nature not for its whole article (for parts of it are enlightening and reasonable), but for buying into facilitated communication. Here’s the premise of the Nature article involving facilitated communication, as stated by Vyse:
This renewed controversy over communication methods has emerged in the context of a larger political fight within the autism community. The Nature story was about efforts on the part of some autism advocates to have people with autism more involved in the planning and execution of autism research. In theory this sounds like a good idea, but this effort has been largely dominated by verbal advocates on the higher functioning end of the autism spectrum. As it is now defined, autism spectrum disorder (ASD) has a remarkably wide range that can include both highly verbal Harvard graduates and nonspeaking people who engage in repetitive and self-injurious behaviors. It includes both people who will be fine and may even thrive living independently and people who will never be able to live independently without substantial support.
Parents of children on the severe end of the spectrum argue that the needs of their children are substantially different than those of the verbal self-advocates on the other end of the spectrum. Furthermore, if the research agenda is driven by people on the less severe end of the spectrum, the approximately thirty percent of children with autism who will never develop speech will be left behind.
That’s why Nature is touting facilitated communication as a way of finding out how the severely autistic want to give input into their worldviews, their problems, and their therapy.
The quote given in the Nature piece below (click to read) is taken from a severely autistic person pointing at a letterboard. And the entire quote, from Rachel Kripke-Ludwig, “a non-speaking autistic advocate and student based in Menlo Park, California” is even more complex (I’ve put the “communication” in bold below):
In the conventional approach, several researchers “are mostly working off the wrong set of assumptions”, writes Rachel Kripke-Ludwig, a non-speaking autistic advocate and student based in Menlo Park, California. “The best way to get it right is to listen to us.”
Not only does the article neglect the decades of work showing that facilitated communication is bogus, but presents statements by people like Kripke-Ludwig as if they really come from the subject and not the facilitator, and endorses the method (my emphasis):
Many autistic people see that as a step back to labels that they have rejected. “I am profoundly gifted, not profoundly low-functioning,” writes Payam, a non-speaking autistic advocate who is based in Atlanta, Georgia. Payam is not an exception, says his mother, Parisa Khosravi. “We need to presume competence and listen to our non-speakers,” she explains, “rather than assume intellectual disability.”
Many other autistic people who are non-speaking or have intellectual disabilities have found ways to speak up for themselves, says Zoe Gross, director of advocacy for the Autistic Self Advocacy Network in Washington DC. “It is completely inaccurate to say that as a group, autistic people with intellectual disabilities, or nonspeaking autistic people, can’t advocate for themselves,” she wrote in an e-mail. “Not all autistic people have access to a communication method that works for them, and for some people, the currently available communication methods may just not work.”
If they could write for themselves, or even point at a static letterboard without guidance, we might accept these statements, which could lead to profound advances in treating autism. But, since the facilitated communicators won’t let their method be tested, we’ll never know. This is one example of what is likely to be woo, or a quasi-scam, impeding science. Nature is not behaving scientifically here, and in fact may be impeding the treatment of people with severe autism. Will different “facilitators” give different answers? How do we know they’re not in cahoots, making stuff up? They might mean well, or even believe that they are bringing out hidden words to help people, but we won’t know that without scientific testing of the methodology. As I said, such tests are not rocket science, and, when used on other means of facilitated communication, invariably show it’s a sham.
As Vyse notes:
Finally, in an odd alliance, some parents of nonspeaking individuals who believe in facilitated communication or one of its variants have been recruited to this fight by the advocates on the higher functioning end of the spectrum. Thus, you have the peculiar situation of an article in the scientific journal Nature, whose title is drawn from a quote that the American Speech-Language-Hearing Association says “should not be assumed to be the communication of the person with a disability.” We have no evidence that the person being quoted said those words, and yet she is being put forth as the poster child for a highly politicized movement. In my view, this is the real travesty. This person has achieved remarkable visibility, including quotes and a photograph in a widely read science journal, yet the available scientific evidence suggests that rather than speaking out for herself she has been silenced and someone else has substituted their voice for hers. All of this may have happened with the best of intentions, but if I am right, it is a substantial injustice nonetheless. And the journal Nature, which ought to know better, is complicit in making it happen.
To learn more about the perils of facilitated communication, visit facilitatedcommunication.org.
Frankly, this is a serious misstep on the part of Nature. Even if facilitated communication eventually did prove to work in some cases, Nature should, at the least, point out the serious issues with it.
UPDATE: This Frontline Video, “Prisoners of Silence”, was noted by a reader in the comments; it shows how the method works (it’s always “facilitated”) and how it was debunked. The power of confirmation bias was strong; in fact, there was no evidence that facilitated communication worked. My one question is this: if the facilitators were sending the messages unconsciously through the subjects, why did so many of them produce messages that the subject was sexually abused?