3/17/2012

This is the Song That Never Ends: Facilitated Communication

Yesterday, I wrote a post about how facebook is a rapid, easy way to spread misinformation and pseudoscience, and the difficulties in figuring out how to respond to pseudoscience when you see it. I wasn't specific about what triggered it, but I reached out to a few who shared the link and provided additional information, I placed a comment where I was invited to do so, and I flooded my facebook wall with information about facilitated communication.

I didn't inundate other people's walls or posts with this information, but I tried in my own drown-my-own-wall-in-information way to make it clear just what hokum facilitated communication is, although I didn't allude to the article that started this flood of links.

Facilitated communication started in Australia with Rosemary Crossley and Anne McDonald. Crossley was an employee at the institution that Anne was being warehoused at. Let's not pretend it wasn't warehousing and that Anne's care wasn't lackluster at best. Crossley got her out of there and cared for her for decades before Anne's death last year. I have no doubt that Crossley cared for Anne deeply and that Anne's life was better with Crossley than it was in the institution. None of this excuses that Rosemary spoke through Anne, co-opting Anne's communication. None of it does.

In 2007, an article with Anne McDonald's byline was posted at www.seattlepi.com. It is a compelling piece, an inspiring piece, but it is almost certainly not the product of Anne. In the piece, Anne writes, "As the hospital didn't provide me with a wheelchair, I lay in bed or on the floor for most of the next 14 years. At the age of 12, I was relabeled as profoundly retarded (IQ less than 20) because I still hadn't learned to walk or talk." This should immediately, if nothing else does, even if the reader knows nothing of Rosemary Crossley or of facilitated communication, raise red flags. It is highly unlikely, given that Anne entered the institution at the age of 3, and grew up in a deprived environment with a lack of stimulation, and no attempt to provide education or the rudiments of language that she acquired the language skills represented in this 2007 article.

Indeed, language acquisition has critical periods:

Early postnatal childhood experience can decisively interfere with first language (LI) acquisition, including the LI acquisition of American Sign Language (e.g., Cohen, 2002; DeKeyser & Larson-Hall, 2005; Grimshaw, Adelstein, Bryden, & MacKinnon, 1998; Newton, 2002; Sakai, 2005). Feral children who have grown up in the wild (e.g., with wolves) or in isolated conditions during the first 4-6 years of their life during which time they are not exposed to human interaction and language, appear unable to speak complete sentences or learn Sign Language (e.g., Victor & Genie in Newton). These reports showed that although the genetic contribution is essential, environmental conditions can be decisive for the functional outcome. (Uylings)
Language is not passively learned, and situations that are sub-optimal, as Anne's was, are not conducive to learning language. For a primer on language acquisition in neglected children, please see Timothy Mason's fascinating lecture

Even if we granted that a child who had no brain damage and was provided no stimulation, no education, and little interaction could in late adolescence be taught language, the facts about facilitated communication are, for those who are following the scientific evidence rather than wishful thinking, undeniable. Facilitated communication doesn't work and isn't the communication of the individual, but is instead the product of the facilitator.

And now for all the links and quotes:

From Burgess et al., "Facilitated Communication as an Ideomotor Response":
 

From Gorman (1998): 
Financial issues have shadowed FC ever since the early days of its creation in Australia. FC was unconventional right from the beginning when it was created in 1977 by a "Play Leader" educated in the humanities named Rosemary Crossley (Makarushka, 1991). Crossley first used FC to communicate with a 16-year-old resident of St. Nicholas Hospital named Anne McDonald who had cerebral palsy and was mentally retarded. Two years later when McDonald turned 18, Rosemary Crossley facilitated a request from McDonald indicating that she wanted to leave the hospital and live with Crossley. The hospital objected to Crowley's claim and did not believe that McDonald was the author of the messages. However, an Australian court in The Queen v. The Health Commission of Victoria, Lipton and McGinn ex pane Anne McDonald was impressed by FC and allowed the release of McDonald to Crossley in May of 1979 (Dwyer, 1996).
After Crossley successfully severed McDonald's ties to the hospital, she returned to court to release McDonald's financial affairs from Australia's "Public Trustee" After these ties were cut, Crossley signed her and McDonald's name to a publishing contract with Penguin books. The book, Annie's Coming Out, led to a movie detailing their experiences (Dwyer, 1996). The court understood the financial consequences and possible motivations surrounding the release of McDonald's financial affairs. An appointee of the court said that Crossley, "may make a personal gain. She conceded that she may do so" (Dwyer, 1996). But it was reasoned "that if such motive exists, it is of a secondary nature." Thus, the court relinquished the Public Trustee's control over McDonald as an infirm person and allowed McDonald's affairs to be dictated by FC in September of 1979 (Dwyer, 1996).
Crossley tried similar tactics to remove other patients from St. Nicholas Hospital. But in 1984, the court in Wallace v. Health Commissioner (Dwyer, 1996) stopped Crossley, citing the findings of the 1980 "Eisen Committee Report" which investigated and rejected Crossley's claims regarding the patients' ability to facilitate. Undaunted by her failure to release others from the hospital, Crossly eventually went on in 1986 to establish her own independent institute called DEAL, which promotes FC.
Early in 1998, Crossley raised the specter of financial motive again in her misguided and ironic attack on the late Dr. Leo Kanner, the physician who first discovered the classic features of autism. Crossley, who by her own admission only saw one person diagnosed as autistic before 1986 (Crossley, 1997b), the same year she opened her institute (DEAL website, 1997), recently said that Kanner "created" the disability of autism, and that "[i]f it had been possible to patent it, he would have made a fortune; Kannerism Copyright autism Trademark" (Crossley, 1997b). She went on to say that, "No refereed journal would dream of accepting it [Kanner's seminal paper] today" (Crossley, 1997b). Crossley is not the only one to cast stones from a glass house. U.S. News .& Worm Report stated, "Biklen thinks skeptics resist his method because it shatters their own theories about autism" When Biklen was asked whether he believed that critics attack him because of the threat that FC poses to the careers of his critics, Biklen responded, "[i]t's academic name calling, it's not important" (telephone interview, 11/25/97).
And again from Gorman:

Well-meaning facilitators who unconsciously speak for the disabled do so at the expense of being sensitive to more subtle behavioral cues that can effectively communicate an individual's basic wants and needs (Carr et. al., 1994). Not since the days of warehouse institutionalization have the disabled experienced as much powerlessness and loss of autonomy as they do with well-meaning facilitators today.

From Norton (2006):

What were the costs of uncritically accepting these facilitated messages? False accusations of sexual abuse were made, parents were investigated for child sexual abuse (some were even jailed), children were placed in long term foster care, families were torn apart, millions of public school dollars were spent to hire and train facilitators, and years of schooling were wasted as autistic children sat in advanced classes rather than learning the life skills they would need.
From Riggott (2005), concerning a documentary about Sue Rubin:
This story of hope against all odds sounds like a feel-good Hollywood drama. But the lead character in Autism Is a World is a real woman, and the film was nominated for best documentary short subject. What the documentary doesn't mention, however, is that FC has a dramatic and highly controversial history that reached a climax more than a decade ago when it was exposed as a pseudoscience.

From Gina Green:

A full and complete explanation for the FC phenomenon is still forthcoming, but clearly there are parallels with the ideomotor responses that direct dowsing sticks and the Ouija board. As the facilitator gently directs the hand to begin typing, letters are formed into words and words into sentences. Just as with the Ouija board where elaborate thoughts seem to be generated out of thin air while both parties consciously try not to move the piece across the board, the facilitators do not appear to be conscious that it is them generating the communication. Even with the autistic child looking elsewhere, or not looking at all (eyes closed), the hand is still rapidly pecking out letters as if it were a miracle. Unfortunately there are no miracles in mental health. All of us wish FC were true, but the facts simply do not allow scientists and critical thinkers to replace knowledge with wish.
From Steven Novella:
Scientifically, there is no controversy here. The claims of FC were always highly implausible and problematic, and the research has overwhelmingly shown that it is an illusion. It is a particularly cruel illusion – to patients, their families, and also practitioners who mean well and were as deceived by the ideomotor effect as their clients.
But there is no longer any reasonable sympathy to be had for practitioners of FC. The information is out there. The ethical responsibilities of due diligence and to first do no harm precludes the use of a dubious technique such as FC.
FC has died as a mainstream practice, but like all such practices it remains on the fringe. I am now seeing what appears to be a new generation of FC proponents, as awareness of FC has waned. Younger health care providers are not as aware of the FC story and so are not as immediately critical of it as they should be. The allure of FC is probably just too compelling for it to quietly go away, and every generation will likely have to debunk it anew.
 And for a current news story from Australia on FC, please watch this video.

For a comprehensive list of pieces I have written on FC, see below:

FACILITATED COMMUNICATION RELATED POSTS

A Look at Facilitated Communication Posts and Disappointment
Cheating: There Should Be No Shortcuts (and FC is)
Confusing Terminology: When Parents Use Jargon Differently (or when facilitated is used instead of augmentative)
Facilitated Communication Quackery gets Journalistic Promotion in Annapolis
Facilitated Communication: A Price Too High To Pay
Facilitated Communication: A Review of the Literature (with a new introduction)
Fried Chicken Initiatives, Internet Laws, Cognitive Dissonance, and Self-Justification
Holding Educators Accountable For Evidence-Based Practices: FC Isn't One
Navigating the Autism World: Minefields at Every Turn (FC is still Bunk)
Skepticism of Stories to Good to be True
So if Facilitated Communication has been shown to be Pseudoscience, What's a Parent to Do with a Nonverbal Child?

Facilitated communication doesn't work. It is a shortcut that may lead to miraculous results but those results are ultimately revealed to be no more than the emperor's new clothes.

 Resources:

Gorman, B. J. (1998). Facilitated communication in America: Eight years and counting. Skeptic, 6(3), 64.

Norton, L. (2006). Facilitated Communication and the Power of Belief. Skeptic, 12(4), 14-15.

Riggott, J. (2005). PSEUDOSCIENCE IN AUTISM TREATMENT: ARE THE NEWS AND ENTERTAINMENT MEDIA HELPING OR HURTING?. Scientific Review Of Mental Health Practice, 4(1), 55-58.
 
Uylings, H. M. (2006). Development of the Human Cortex and the Concept of "Critical" or "Sensitive" Periods. Language Learning, 56(1), 59-90.

5 comments:

farmwifetwo said...

They just don't call it FC anymore. http://www.goodreads.com/book/show/10727175-autism-solutions Only a year old and there's a large section on FC and none of the negatives.

Any touching IMO is FC when the child is supposedly typing. My youngest types the way he thinks/speaks/echo's. Sometimes we can follow it, sometimes we cannot. This is a child that likes WwS b/c he can hear the words and then ask for "spell" when they don't sound correctly and he knows they are spelled incorrectly.

He's had years of schooling, therapy and homeschooling. He doesn't write amazing, gramatically correct missives. He has trouble concentrating for any length of time yet these children write essays.

Hand over hand is an important tool. We can teach a child to "scrub a teletubby" on the PBSkids webside. Push the keys on a piano to see how it makes music. Help to learn to put on your socks. But that is "learning", that isn't "doing". "Doing" is messy... and I prefer my disjointed and short writings over anyone's prettied up essays. Atleast I can say he did it himself.

kathleen said...

excellent post. Unfortunately-too many people read this as you saying that non verbal people can not communicate-which is totally NOT what you are saying. This has been debunked-over and over. It is an offense to the person whose communication is being co-opted. Sad thing is-people won't believe the science...they would rather believe that ALL OF A SUDDEN-non verbal people are communicating brilliantly...and if you say that this can't possibly happen-well then you must think people with disabilities are incapable...It is a catch-22. Thanks for posting the science..although maybe you could post more links??? :0

melbo said...

I love this. It really puts all the major issues together in one spot.

I agree with Kathleen that some will miss the point here. However that can't be helped. All you can do is put the information out there and provide the evidence which you have done.

Fantastic work.

James said...

Kim:

Excellent post.

As for the term "facilitated communication," indeed, they try not to say "FC," but "supported typing," "communicates by typing," or sometimes nothing at all. The Italians, from whom we should expect something more mellifluous, give us the clumsy, "Written Output Communication Enhancement." (It's no better in Italian.) When Douglas Biklen won that big $40,000 award from UNESCO a few weeks ago--the "S" in UNESCO stands for "science," believe it or not--he could not bring himself to mention FC by name in an interview when asked about it directly.

http://tinyurl.com/7evx9ba

Also the latter category we get things like the recent book, The Beyond Access Model
Promoting Membership, Participation, and Learning for Students with Disabilities in the General Education Classroom
by "telepathic FC" practitioner Michael McSheehan and his FC-believing friends, Cheryl M. Jorgensen, and Rae M. Sonnenmeier--with a foreword by Canadian FC promoter Pat Mirenda. (Her BCBA credential must be shedding a tear to be associated so closely with documented autism pseudoscience.) McSheehan's book replete with citations to the FC literature, including items supposedly written using FC--but not to anything with the words "facilitated communication" in the title. This has to be hard to pull off by accident in a book that owes so much to the FC literature and its philosophy. Of course, to accomplish this feat requires leaving off the subtitle of Douglas Biklen's Contested Words, Contested Science: Unraveling the Facilitated Communication Controversy. Sacrifices must be made, I suppose.

Once again. Excellent and timely work.

James T. Todd, Ph.D.

farmwifetwo said...

I liked Bilken's "Autism and the Myth of the person alone". Still do, except that I suspect I missed the FC references at the time - if they were in there. FC has never interested me but that book gave me the push to prove that my severely autistic son truly was not severely ID and uneducatable. Both I have since proven and he can prove INDEPENDANTLY.

Still have no use for FC and no plans to go back and re-read the book. I have put the one recommended above on hold at the library.

Thanks for the rec.