Saturday, March 03, 2007

Facilitated Communication for Autistic Children: Clearly Demonstrated Imaginary! (Usually...)

` As my recurring unwilling subjects have noticed, I tend to write about skepticism on my blog - mostly because of its great importance in everyday life. One of the most valuable things that such critical thinking is good for is to keep oneself from getting duped due to ignorance of the truth.
` That is why I always recommend The Red Pill. (Good for taking care of both lack of knowledge and flu symptoms....)

` Many moons ago, I received a most intriguing e-Skeptic article in my inbox about an alleged new and stunning development in allowing previously uncommunicative autistic children to express themselves - one I recall that was featured in a documentary on the Discovery "Of Many Inaccuracies and Deceits" Channel.
`
Supposedly this was a seemingly miraculous method of communication where an assistant can guide the hands of a mute, illiterate autistic child over a typing keyboard, allowing him or her to not only communicate with perfect grammar and spelling, but to take college-level science courses! (Come to think of it, I clearly remember the typed phrase 'I like biology class' from the documentary.)
` This technique was called facilitated communication, and it turns out that almost every single case ever tested has been unequivocally proven as the work of the facilitator, not the patient (though I don't expect that the facilitator is consciously aware of this):
` For example, when the facilitator and the patient are each shown a different object and then the patient is asked what object he or she had seen, the answer corresponds to what was shown to the facilitator!

` What does that tell you?

` Though I would much rather have written an article about this particular subject myself, in my own words, I have instead slapped the article onto this post like a naughty girl because I haven't even had the five hours required for the task. (And, alas, I must go to bed shortly.)
` Yes, s
adly I have no time to write an original article (much like a lot of instances before this, only moreso). I had you for a minute, though, didn't I?
`
Without further ado/newts/jock straps:

Facilitated Communication
& the Power of Belief

How Time magazine got it wrong

by Lawrence Norton

The cover article of Time magazine dated May 15, 2006 was entitled, “New Insights Into the Hidden World of Autism.” The article began with the story of a 13-year old profoundly autistic girl whose language was “limited to snatches of songs, echoed dialogue, and unintelligible utterances” and who was “most likely retarded.” However, a few days before her 13th birthday, Hannah was introduced to a communication technique known as facilitated communication.
` This is technique whereby a “facilitator” helps stabilize an autistic person’s hand and arm so that they are able to type a message on a keyboard. On that day, the girl was asked by the facilitator, “Is there anything you’d like to say, Hannah?” Hannah, with the assistance of the facilitator, then typed out, “I love Mom.” A year and a half later, Hannah is working her way through high school biology, algebra, and ancient history.1

If you are skeptical of this claim, you have good reason to be. Facilitated communication is a technique originally developed in Australia to assist individuals with physical limitations such as cerebral palsy to communicate via a keyboard. The technique was introduced in the United States in 1990 by Dr. Douglas Bicklen, a professor of special education at Syracuse University. While facilitated communication was never intended for use with autistic children, Bicklen believed it had the potential to provide a means of expressive communication for uncommunicative autistic individuals.
` Bicklen believed that while autistic children understood language, they were unable to express their thoughts due to a type of developmental apraxia that impaired their ability to control voluntary movement. It was their inability to express themselves, according to Biklen, which often masked the autistic individuals’ true cognitive and linguistic abilities.2

Like 13-year old Hannah, parents of autistic children in the early 1990s found that when assisted by a facilitator their autistic children demonstrated extraordinary abilities. Five and six year old autistic children were writing complete sentences. Others wrote poems and short stories, while autistic adolescents successfully completed high school and college courses despite never having been taught to read or write or having demonstrated such abilities.3

Public schools around the country spent millions of dollars to hire and train facilitators. Parents made plans to have their child’s facilitator accompany them to college. Parents, teachers and therapists did not question the validity of the facilitated communications. They believed facilitated communication was a breakthrough technique that completely redefined autism. The messages their autistic children typed, such as Hannah’s “I love mom,” was all the validation many parents would ever need.

However, some began to doubt the validity of the facilitated communications and began to ask difficult questions. Why would a child be able to successfully communicate with the assistance of a facilitator at school, but not at home with his or her own parents? How could a child demonstrate extraordinary literacy, writing grammatically correct sentences, when they had never been taught to read or write? How could a child type a message on a keyboard while they were staring at the ceiling? And most importantly, were the facilitated communications real? Were the autistic children authoring these writings, or were the facilitators?

The question of whether the facilitated communications were real took on increased urgency when accusations of child sexual abuse began to surface around the country. As a result of these accusations, autistic children were removed from their homes by child welfare agencies while their parents were charged with child sexual abuse.

One of the first investigations of the efficacy of facilitated communication resulted from one of these sex abuse accusations. A profoundly autistic adolescent girl had accused her parents and grandparents of sexual abuse. The girl’s facilitated communication skills were subsequently evaluated by Dr. Howard Shane, a speech pathologist and expert in augmentative communication.
` He first showed the adolescent girl and her facilitator a picture or object. The typed messages that followed correctly identified the picture or object both had seen. However, when the facilitator and child were shown a different picture or object, the message typed out on the keyboard was consistently what the facilitator had seen. It soon became apparent that it had not been the adolescent girl who had authored the accusations, but rather the facilitator.

Individual case studies were followed by larger controlled studies that sought to determine the validity of facilitated communication. These studies typically included autistic as well as moderately and severely mentally retarded individuals—precisely those individuals whom Bicklen and facilitated communication advocates claimed needed facilitated communication in order to express their hidden thoughts.

In a well-controlled 1996 study, for example, the efficacy of facilitated communication was assessed in 12 individuals ranging in age from 7–36. Six of the participants had a diagnosis of autism, while six had severe to profound cognitive impairments. All subjects had demonstrated unexpected literacy once they began using facilitated communication. The facilitators in this study were those who had demonstrated the most success with each subject. Four of the facilitators were the subject’s mothers, two were special education teachers, two were resident assistants, and one a teacher’s aide. The amount of time each facilitator had been facilitating with each subject ranged from six months to two years.

The subjects were assessed in a familiar environment. The subjects or their facilitator were allowed to stop at any point if they felt uncomfortable. The subjects were presented with either an auditory or visual stimulus, and were then asked to identify that same stimulus. When the facilitators were unable to see or hear what the subjects saw or heard, the autistic subjects’ unexpected literacy via facilitated communication was no longer evident.4

In a 1995 study, the subjects included 18 preschool through secondary students diagnosed with autism. All were nonverbal or had extremely limited verbal-expressive abilities. The student’s teachers attended a two-day training session on facilitated communication taught by Douglas Bicklen. After a 15-week period during which the teachers used facilitated communication on a daily basis with the students, the students’ ability to communicate using facilitated communication was evaluated.
` Several students demonstrated the ability to correctly respond to requests and questions when the facilitator knew the answer. When the facilitator did not know the correct answer, however, none of the students were able to respond correctly.5

In a 1993 study with 21 elementary and secondary autistic students, the researchers found no support for facilitated communication and concluded that “no client showed unexpected literacy or communicative abilities when tested via the facilitator screening procedure, even after 20 hours of training.”6

A 1994 study examined the facilitated communications of 19 developmentally disabled adults ranging in age from 23–50. All the subjects in the study had been successfully using facilitated communication in their day treatment facility.
` The study required the individual via their facilitator to identify the color, shape, and the number of shapes they saw on a card. When the facilitator did not see the same card shown to the subject, no subject was found to perform at levels that exceeded chance.7

In a 1996 study of 14 students with autism, none of the students were able to produce functional, typed communication following 10 weeks of instruction in the use of facilitated communication.8

These studies, along with many others, failed to validate the claims of facilitated communication advocates.9 The empirical data was clear. It was not the autistic children who were authoring the typed messages, but their facilitators. The results of the scientific studies prompted the American Psychological Association in 1994 to adopt a resolution that stated, in part, that “facilitated communication is a controversial and unproved communication procedure with no scientifically demonstrated support for its efficacy.”

Parents, their relatives and friends, teachers and therapists had all had wanted to believe that the facilitated communications were real. Any caring, empathetic person would want them to be real. Unfortunately, the scientific results were unequivocal.

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.

This recent Time magazine article will undoubtedly be eagerly devoured by the parents, relatives, friends, therapists, and teachers of autistic children. Despite the overwhelming scientific evidence accumulated over a decade ago that clearly demonstrated that facilitated communication is an illusion, a minority of parents of autistic or severely mentally impaired children have continued to believe in the technique.
` Whether advocates of facilitated communication will one day succeed in bringing facilitated communication back into the mainstream is unclear, although this recent article is certainly troubling. The history of facilitated communication, however, should remind us of the significant costs that are often incurred when we, as a society, uncritically accept what we want to believe to be true based on emotion, rather than accepting what is based on fact.

References & Notes

  1. Wallis, C. 2006. “Inside the Autistic Mind.” Time, May 15, 42–51.
  2. Bicklen, D. 1990. “Communication Unbound: Autism and Praxis.” Harvard Educational Review, 60, 291–314; Bicklen, D., Morton, W.M., Gold, D., Berrigan, C, & Swaminathan, S. 1992. “Facilitated Communication: Implications for Individuals with Autism.” Topics in Language Disorders, 12, 1–28.
  3. Palfreman, J. 1993. Prisoners of Silence. Frontline, PBS.
  4. Beck, A.R. & Pirovano, C.M. 1996. “Facilitated Communicators’ Performance on a Task of Receptive Language.” Journal of Autism and Developmental Disorders, 26 (5), 497–512.
  5. Simpson, R.L., & Myles, B.S. 1995. “Effectiveness of Facilitated Communication with Children and Youth with Autism.” The Journal of Special Education, 28 (4), 424–439.
  6. Eberlin, M., McConnachie, G., Ibel, S., & Volpe, L. 1993. “Facilitated Communication: A Failure to Replicate the Phenomenon.” Journal of Autism and Developmental Disorders, 23 (3), 507–530.
  7. Regal, R.A., Rooney, J.R., & Wandas, T. 1994. “Facilitated Communication: An Experimental Approach.” Journal of Autism and Developmental Disorders, 24 (3), 345–355.
  8. Bomba, C., O’Donnell, L., Markowitz, C., & Holmes, D. 1996. “Evaluating the Impact of Facilitated Communicative Competence of Fourteen Students with Autism.” Journal of Autism and Developmental Disorders, 26 (1), 43–57.
  9. Green, G., & Shane, H.C. 1993. “Facilitated Communication: The Claims vs. the Evidence.” Harvard Mental Health Letter, 10, 4–5; Montee, B.B., Miltenberger, R.G., & Wittrock, D. 1995. “An Experimental Analysis of Facilitated Communication.” Journal of Applied Behavior Analysis, 28, 189–200; Moore, S., Donovan, B., Hudson, A., Dykstra, J., & Lawrence, J. 1993. “Evaluation of Facilitated Communication: Eight Case Studies.” Journal of Autism and Developmental Disorders, 23, 531–539; Mostert, M.P. 1995. “Facilitated Communication Since 1995: A Review of Published Studies.” Journal of Autism and Developmental Disabilities, 31 (3), 287–313; Szempruch, J., & Jacobson, J.W. 1993. “Evaluating the Facilitated Communications of People with Developmental Disabilities.” Research in Developmental Disabilities, 14, 253–264.

` Having not even thought about this subject for years, I was utterly stunned by this article. Seriously think about this; how could anyone be so blind as to enroll a kid in a high school or college class despite the fact that the kid doesn't even really understand what's going on? Obviously, this means that the only ones who are actually learning all those things are the facilitators! (Ah, but what a great way to be paid to get an education!)
` I wonder, however, how many of these facilitators actually realize that they are actually doing what they are doing? Are any of them purposely committing fraud or are all of them simply experiencing the same kind of mental effect that has people believing they are facilitating communication from spirits through use of an Ouija board? (Blindfolding the user is all that is required to turn any 'spirit message' into unintelligible nonsense.)
` All I can say for sure is that it's enough to make my head spin, as well as my gut churn.

15 comments:

Gareth said...

I believe I have just been witness to the biggest bug ever on record at the top of this post. It looks almost human but yet has a somewhat scientific orifice on the top of its head. It would also appear to have a mucus like substance hanging from the tunnels in the front lower half of its face. This may be its defence mechanism for warding off anything that may want to feast on it.
This creature should be placed under laboratory arrest and studied for the rest of its natural life. Perhaps it will turn out to be the true missing link between bugs and aliens. We shall see.
However, for now I will name it Insecticus Mucusious Dampitis Enemacus Atenoid Deflateacus or IM DEAD for short ....

G-Man said...

Sequin, the lies that facilitators have been spreading for years is apalling. I for one commend your dangerous expose' of this very serious social injustice. In the old days, a lying facilitator that was caught fucking up the mind of an autistic child, was given a choice. The choices were prison....or being made to watch 100 hours of Marcel Marceau walking against the wind.
That took care of that shit! Keep up your rampage against "The Man"...Are you on the Dean's List?.....G

portia said...

Hello Mad Scientist-
I invite you to read my book: 'Strange Son' and then let's talk. I will send you a copy, if you'd like. I enjoyed visiting your site. Mine is www.strangeson.com.
Best regards, -Portia Iversen

Galtron said...

People taking advantage of innocent families by playing on their emotions?

Unheard of! ;)

It's always the hardest of 'red pills' to swallow!

S E E Quine said...

` Gareth, you charmer! I've never been called a bug/alien missing link before!

` G-Man, as I have actually done some pretty damn good articles with my own original research, perhaps I will make the Dean's list.
` The article I submitted to my school's badly-written newspaper did not, however, have a chance at raising the quality of the paper because they didn't have enough articles to warrant adding a new bifold, such is the paucity of materials they have to choose from.
` In other words, there was too much space and not enough submissions for my article to fit!! Huh!? Perhaps if I supply several articles per issue, not only would I be assured of success, but they'll have to change the name from 'The Clipper' to 'The Spooner'.
` And then... the world!

` Portia, if I wasn't at a computer class right now, I'd talk this moment. I take it you don't agree with the article?

` Galtron, do you have any red pills at the moment? I ate all mine. I find they are good to slip into people's drinks. It's fun!

Anonymous said...

I don't think shes disagreeing with you. I think she really really thinks your cool and can help her!

Good to know about these things.

acujames said...

Hey, no hard feelings, but you're just wrong about autism, FC and the science! I replied in nauseating detail at my blog, here.
best regards,
jim

S E E Quine said...

` As my computer has been down for several days now, I'm finally using a school computer to check up on (a little of) my email, and I'm finding a lot of flack about this post.
` For example:

Until you have made the effort to communicate with people with autism using facilitated communication, you have done nothing more than slam the door shut in the faces of people who can thinking critically far better than you will ever be able to........I know, because I've been there and I've had those conversations and I know that they are real.

I expect that you will mature in time and realize how foolish you have been.


` Normally, I would say, "Lady, stop using your emotions!"

` But then I read acujames' blog post about some such patients who used facilitated communication to learn how to type, etc.
` Indeed, since I wrote this post, I have found bits of evidence like this saying that perhaps there is something to it after all.
` But then, if that is so, why does the American Psychological Association describe it as "a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy" because "Studies have repeatedly demonstrated that facilitated communication is not a scientifically valid technique for individuals with autism or mental retardation"?
` I don't think that uncommunicative patients are necessarily mentally retarded, so it would be no surprise that it could be proven that they weren't.
` What seems to be going on is that FC really does work with some individuals, while this is not the case for the vast majority. It is just hard to tell, and facilitators are usually very shocked to find that their own thoughts were being communicated instead of the patient's.

` My suggestion; test each case, one by one. If a facilitator cannot help a patient communicate something only the patient knows, there is good reason to be suspect.

acujames said...

S E E Quine, my hat's off to you on your open-mindedness about looking at evidence. I completely agree with your caveats stated in the preceding reply. Any responsible person would as well, imo. Undoubtedly some folks out there are approaching FC pseudoscientifically (and giving it a bad name), but fortunately the FC people at Syracuse advocate a set of "best practices" that take into account the issues raised by the research.

On the APA statement (archive version here; currently inaccessible at APA's site), I think there are several factors. The most obvious one is that the statement was published in 1994, prior to the publication of the controlled studies showing instances of valid FC (e.g. this one). Additionally, some FC supporters (e.g. Wade Hitzing) suggest that the APA statement may have reflected a behaviorist bias that tended to discount autistic intelligence. The latter topic has been the subject of recent research (e.g. Goldberg Edelson and Dawson et. al.) and seems ripe for the sort of revolution that has transpired in the past with regard to the abilities of the deaf-blind, people with cerebral palsy, and others. Finally, it should be said that controlling the variables involved in the communication of autistic people is no easy task (cf. the amusing term "physics envy"), and there is debate on all sides regarding the design of controlled studies on FC.

As a scientist, not to mention a pragmatist who knows that some people still dismiss FC outright, I do my best to (a) encourage my son's independent communication and (b) validate that his FC-ing is real. There are various ways I've approached verifying his FC objectively, and that's a subject for a whole nuther blog post. I've generally heeded the "best practices" linked above, and as well as the approach described in this fascinating case study (pdf file).

Again, kudos to you for blending skepticism with an open mind.

(And sorry I got so link-happy in my reply; I cross-posted the above at my blog, just to keep them at hand. Cheers!)

S E E Quine said...

S E E Quine, my hat's off to you on your open-mindedness about looking at evidence....

` Well, of course; that's the way skeptics are supposed to be! Thanks for the links - although for some reason they're not loading for me. (I don't know why; I think it's my computer or something.)

...Again, kudos to you for blending skepticism with an open mind.

` Why would anyone think skepticism and open-mindedness are contradictory? In a way, skepticism is the most open-minded you can be (without, of course, your brains falling out!).

Anonymous said...

` Why would anyone think skepticism and open-mindedness are contradictory? In a way, skepticism is the most open-minded you can be (without, of course, your brains falling out!).


.... it must just be the skeptics I've met that have been close-minded ignorant buffoons. That and egotistic Psychologists with a self assumed power trip (as they can "supposedly" assess others intelligence). get a freakin life. Drop the superiority complex - and shrivel up in the corner you belong in. The world must be pretty sad in black in white.

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Anonymous said...

it must just be the skeptics I've met that have been close-minded ignorant buffoons. That and egotistic Psychologists with a self assumed power trip (as they can "supposedly" assess others intelligence). get a freakin life. Drop the superiority complex - and shrivel up in the corner you belong in. The world must be pretty sad in black in white.

S E E Quine said...

` I'm quite familiar with the type, as I explained here....