The facilitated communication empire strikes back over the Midwest Summer Institute

Since this week represented the first time in a long time (as in several years) that’ve written about the quackery that is facilitated communication (FC), I thought it would be worth a followup post. As you might recall, the University of Northern Iowa hosted the Midwest Summer Institute, a conference that was largely about facilitated communication. As I related in great detail on Tuesday, the second day of the conference, FC is pseudoscience. I’ll briefly recap why in case you don’t want to click the link. Originating in Australia in the 1980s and spreading to the US like wildfire in the late 1980s and into the 1990s, basically, FC is a methodology that is claimed by its adherents to help people who are nonverbal or have severe communication impairments communicate using a keyboard or a pointing device (or, these days, an iPad or other tablet). To assist the person using the keyboard or pointing device, a “facilitator” helps move the person’s hand to push the keys or point to letters, words, or images on whatever device is being used. Seemingly spectacular results were reported, with nonverbal people communicating sophisticated thoughts through facilitators.

There was just one problem.

That problem turned out to be what anyone with a bit of skepticism might guess. It wasn’t actually the client who was communicating, but rather the facilitator. Whenever rigorous testing was done, it was observed that the client couldn’t identify objects if the facilitator couldn’t see them and couldn’t respond to statements if the facilitator didn’t hear what had been said. Many videos purporting to show FC in action clearly show the client not even paying attention to the screen while typing. Now here’s the thing that’s difficult for some to understand. Facilitators really and truly believe that they are helping their clients and accurately helping them to communicate. They are not, however. Thanks to the ideomotor effect (the same effect responsible for Ouija board “communication”), facilitators guide their clients’ finger to what they think the client is trying to say, not to what the client might actually want to say; that is, if the client is capable of saying anything at all. Basically, it’s quackery.

As I recounted earlier this week, the University of Northern Iowa (UNI) and the University of Syracuse co-sponsored the Midwest Summer Institute held at UNI. It ended yesterday, but the fallout continues. A number of academics (myself included) cosigned a letter written by Janyce Boynton urging UNI not to hold the conference. Obviously, it didn’t work. UNI did ultimately respond to the letter, as reported in The Gazette yesterday:

Following widespread criticism of its involvement in a conference featuring the controversial practice of “facilitated communication” with disabled individuals, the University of Northern Iowa is convening a group of faculty experts to discuss practices featured at the event.

“We regularly evaluate UNI’s sponsorship of conferences and events to ensure that we are supporting high-quality programming consistent with the mission of the university,” UNI spokesman Scott Ketelsen said in a statement.

I was sent a copy of the entire text of the letter:

There have been concerns raised about practices presented at the Midwest Summer Institute: Inclusion & Communication for All conference being hosted on the University of Northern Iowa campus this week. The University of Northern Iowa does not condone any practices that are harmful to any individual. Our focus is on nurturing and supporting all individuals in the pursuit of a high-quality education. As an institution of higher learning, we value the exploration and critique of ideas and practices through rigorous evaluation of multiple sources of evidence. We welcome and respect debate on practices that assure broad inclusion in serving and supporting vulnerable populations and individuals with disabilities.

We regularly evaluate UNI’s sponsorship of conferences and events to ensure that we are supporting high-quality programming consistent with the mission of the university. We will be convening a group of faculty experts from across campus to discuss the practices presented at this conference and to provide recommendations as to whether UNI should continue to sponsor this conference in the future.

Sincerely,

Scott Ketelsen

Director, University Relations
The University of Northern Iowa
125 East Bartlett
Cedar Falls, Iowa 50614-0392

Office: 319-273-2761
[email protected]

My first reaction to this letter was that this is just bureaucratese for “Thank you for your concern.” However, taking Mr. Ketelson at his word (and, remember, he’s just the PR person, not the person making any substantive decisions), color me skeptical that this “faculty review” of the practices presented at the conference will end up making a difference. The reasons for my doubt lie in another article about the conference published yesterday in The Courier, Proponents of facilitated communication defend Midwest Summer Institute, by Amie Steffen. You can tell where this article is coming from from the very first sentence:

For those struggling with autism to those with cerebral palsy, communicating can sometimes be difficult.

It’s something Jean Trainor knows firsthand: Her son was born with Joubert syndrome, a rare brain development disorder.

It prompted Trainor to help found the nonprofit Inclusion Connection, which eventually lead to starting the annual Midwest Summer Institute at the University of Northern Iowa — a two-day conference that aims to help educators, parents and others use augmented communication methods with those who can’t communicate on their own.

The conference, which wraps up Wednesday, has come under fire from both inside and outside of the university for promoting facilitated communication, a type of augmented communication that critics say is scientifically discredited. But Trainor said the conference will continue.

“There’s still a need for students to be included in school, for people with disabilities to have jobs, to be able to communicate,” she said.

Yes, Ms. Trainor is clearly a true believer. It didn’t take me much Googling at all to find evidence of that, for example, this article in The Courier from 2007, Awakening the Silence:

Nathan Trainor lived in silence for 22 years.

Born with Joubert Syndrome, a rare genetic disorder, Trainor was unable to do what many take for granted – speak. Years of countless therapies were unable to give Trainor a voice, until facilitated communication (FC) opened a door for him in 2006.

FC is a controversial method that requires an aide to provide physical support to non-speaking individuals as they type their thoughts on a keyboard or point to letters on a simple board. Some doubt FC’s legitamacy because it can be hard to tell who is actually doing the communicating.

This alternative method of augmentative communication (supplementing natural speech) has been an effective form of expression for some individuals with autism and other developmental disabilities, according to the Facilitated Communication Institute at Syracuse University in New York.

You know, I’m getting the feeling that The Courier is rather pro-FC in its outlook, at least based on these two articles cited thus far. And, no, we’re not talking about the methods that FC advocates frequently point to in order to deflect criticism, such as augmented typing technologies that clients can learn without a facilitator guiding their hand from one key to the next. We’re talking the real thing, real FC, complete with the facilitator guiding the patient’s hand:

“Great tears of joy FC is to me,” Trainor, a 23-year-old Wartburg student typed as Michelle Schipper, his aide, provided light support at his wrist.

Due to his disability, Trainor lacks control of his fine motor skills. After he selects a key, Schipper gently pulls his hand back so Trainor can move to the next letter.

“Since we started, he requires touch less and less,” Schipper said.

Trainor has only been writing a year, but already has aspirations to pen a book and screenplay about his life. A self-taught reader, Trainor exudes intelligence when his fingers hit the portable keyboard. His progress spites skeptics, who labeled a 3-year-old Trainor as “mentally retarded.”

One wonders whether Schipper has ever been subjected to rigorous testing, the way that Boynton forced herself to undergo when she began to doubt FC. On the other hand, if there’s one thing about FC that is very similar to what I’ve observed about alternative medicine, it’s that its advocates always prefer anecdotes, testimonials, and uncontrolled case reports or case series to rigorous blinded testing. It’s also that, the less rigorous the testing the more likely it will appear to be positive, and the more rigorous the testing the less likely it will produce positive results. (The analogy to acupuncture studies is impossible to resist making.) I’ve had speech therapists and pathologists suggest to me that in these anecdotes it is likely that the patients learned to type more in spite of FC rather than because of FC. Indeed, I saw an example of that while researching yesterday’s post where the client could type mostly unaided by the facilitator, who intervened very little.

Unfortunately FC belief is strong, and the Courier article trots out all the tropes:

For some, the communication can involve an iPad app with a letter board or vocabulary words that an individual points to or types, sometimes with help. For those with more severe motor coordination issues, it could involve someone holding an elbow to help steady them.

Of course, this form of FC is not the most common form, and it is not this form that most skeptics have a problem with if the “facilitator” isn’t guiding the individual’s hand to different letters, but that’s rarely truly the case. FC advocates also seem to have a problem accepting rigorous testing, preferring to rely on less reliable sorts of testing:

“When that person is having a conversation with us … maybe we just touch their elbow, and they talk to us, or they tell us something we don’t know, and we verify it with a person in their life,” Hanson said. “So there’s different things that come up that will validate their authorship.”

Or you could subject yourself to controlled testing to verify that it is not you who are putting words into the person’s mouth, so to speak, no matter how good your intentions are or how much you think you aren’t doing just that.

Basically this article is one big propaganda piece for the University of Northern Iowa and Syracuse University’s Institute on Communication and Inclusion (formerly known as the Facilitated Communication Institute). Skeptics’ arguments are introduced only to be dismissed by either Trainor or someone else, and the article reproduces verbatim talking points of the Institute on Communication and Inclusion, including:

Research
demonstrates
that
physical
support
can
negatively
influence
the
facilitated
communication
user’s
typing,
but
at
the
same
time
there
is
substantial
research
in
which
individuals
demonstrate
the
ability
to
produce
authentic
communication.

The first part of that statement is the understatement of the year, and the second part of that statement is, well, not exactly true, unless by “substantial research” you mean “large quantities of crappy research.”

For
each
individual
who
learns
to
use
facilitated
communication,
it
is
crucial
that
the
person
learns
means
of
demonstrating
authorship,
for
example
by
learning
to
pass
messages,
by
learning
to
make
multiple‐choice
selections
without
physical
support,
by
speaking
before
and
as
typing,
by
typing
without
physical
support,
or
through
other
available
methods.


If that were truly the case, skeptics would not have nearly the level of objection to FC that we do now, although even this wouldn’t be enough. After all, these very methods of determining authorship have proven utterly inadequate to the task of preventing false accusations of sexual abuse that have torn families apart.

The propaganda concludes with a huge false dichotomy:

The alternative — a world where disabled people don’t have facilitated communication open to them — is not an inclusive one, said Trainor.

See what I mean? The false dichotomy here is that either disabled people have facilitated communication, or they are not part of an inclusive world. Of course, no one, least of all skeptics, doesn’t want people with impairment in communication shouldn’t be provided every assistance, technological or therapy, to maximize their ability to communicate with other people. No one. What we object to is that FC is a false technique that actually can rob those very people of their voice.