Much appreciation for open-mindedness

This is a reply to S E E Quine's thoughtful reply to my post below on FC-skepticism.

My hat's off to you on your open-mindedness about looking at evidence. You concluded:

"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."

I completely agree with those caveats. 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; not working as of 3/19/07, but available on p. 79 of large PDF here).

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

Addressing the tired anti-FC spiel yet again

The argumentation of FC-skeptics (*see note at end of post) makes for a fascinating case study in cluelessness and disingenuousness. The basic pattern is to assume a priori that nonverbal autistic people aren't intelligent (since we've always assumed so, it must be true), and selectively quote from the literature, pasting in excerpts from some controlled studies and pretending that anyone who supports the use of FC is anti-science.

That's what the "smart" FC-skeptics do. The lesser lights simply parrot the words of so-called skeptics. Which is about as ironic a situation as can be, given that the central issue in FC is over who is really communicating.

A good example of the latter is seen in an article by Lawrence Norton quoted at "Introspection of a Struggling Mad Scientist", which tells us that "the scientific results were unequivocal" and that Facilitated Communication is imaginary.

One basic assumption of reasoned debate is that it's important to give one's opponent's views a fair shake, and address their strongest arguments, and not misrepresent them. This quality is sadly lacking in most FC-skeptics. FC proponents do not deny that facilitators can and do influence communication, but they point to evidence that sometimes the words really do come from the person being facilitated. Some of that evidence comes from peer-reviewed, controlled studies (see below). Additionally, some FC users have gone on to type independently, and affirm that FC was, for them, far from imaginary. (More on this at my low-tech Autvocate.com page on FC research.)

For an adequate presentation of the case for FC being valid (in some, not necessarily all cases), I highly recommend Autism and the Myth of the Person Alone, by Dougles Biklen et. al. That book includes first-person accounts by people with nonverbal autism. Many of them were wrongly considered retarded simply because they couldn't complete a standard IQ test. Some of them started out using FC. All have progressed to being able to type without support and/or speak.

I recently reviewed that book at Amazon, and this is a good opportunity to recap some relevant quotes. Get your reading glasses on. From Biklen, ca. p. 9:

"Controversy has swirled around the method of facilitated communication because it has been shown that a facilitator's physical touch of the typist's hand or arm could influence the person's pointing, and because a number of studies failed to validate authorship ([13 references]). Each of the above studies used one basic type of assessment, namely, message-passing; the person being assessed was asked to convey information that could not be known to the facilitator. Other studies, using a range of test situations as well as linguistic analysis and documentation of physical, independent-of-facilitator typing, have successfully demonstrated authorship ([11 references]). The studies by (lists 3) all involved message-passing experiments, but unlike many of the assessments in which individuals failed to demonstrate authorship, these involved extensive testing sessions, with the possible effect of desensitizing the subjects to test anxiety. The other studies noted above in which individuals have successfully demonstrated authorship involved unobtrusive assessments such as linguistic analysis, statistical assessment of word selection, and independent typing after a period of facilitated typing. Controversy over the facilitated communication method has continued, with some reviewers claiming it has no benefit and may be harmful (e.g., Mostert 2001); others arguing that criticisms of the method are reflective of a tendency within the disability field to equate problems of speech with intellect (Borthwick and Crossley 1999; Mirenda 2003); and other suggesting how parents and practitoners should address any contested methods of education or communication training (Duchan et. al. 2001)."

"In light of the controversy, this book includes [with one exception] individuals who can type without physical support or who can speak the words that they type, before and as they type them and after they have typed them. Beukelman and Mirenda (1998) state that "in regard to a small group of people around the world who began communicating through FC (facilitated communication) and are now able to type independently or with minimal, hand-on-shoulder support ... there can be no doubt that, for them, [facilitated communication] 'worked', in that it opened the door to communication for the first tine ... For them, the controvery has ended" (p. 327). Several of the authors included in this book have published accounts of their emergence into independent typing (Blackman 1999; Mukhupadhyay 2000; Rubin et. al. 2001), and one is featured in a research article on learning how to speak after first learning to type (Broderick and Kasa-Hendrickson, 2001)."


Here's some more stuff that anyone can find at Pubmed, and which FC skeptics never quote in their selective citing of the peer-reviewed literature:

"The case of a 13-year-old boy with autism, severe mental retardation, and a seizure disorder who was able to demonstrate valid facilitated communication was described. ... This case study adds to the small, but growing number of demonstrations that facilitated communication can sometimes be a valid method for at least some individuals with developmental disabilities." (Weiss MJ, Wagner SH, Bauman ML. Mental Retardation. 1996 August.) (abstract at Pubmed)

"Three individuals (8, 10, and 24 years old with diagnoses of autism and mental retardation) participated in a message-passing format to determine whether they could disclose information previously unknown to their facilitators. ... Each participant revealed unique behaviors and styles of responding, and all were able to demonstrate genuinely independent communication through disclosure of specific information previously unknown to a facilitator, although much inconsistency was noted." (Sheehan CM, Matuozzi RT. Mental Retardation. 1996 August.) (abstract at Pubmed)

"Results showed that (a) under controlled conditions, some facilitated communication users can pass accurate information and (b) measurement of facilitated communication under test conditions may be significantly benefitted by extensive practice of the test protocol, which could partially account for the inability of several past studies to verify facilitated communication-user originated output." (Cardinal DN, Hanson D, Wakeham J.; School of Education, Center for Educational and Social Equity, Chapman University, Orange, CA. Mental Retardation. 1996 August.) (abstract at Pubmed)

"There are frequent claims in the literature that a majority of children with autism are mentally retarded (MR). The present study examined the evidence used as the basis for these claims, reviewing 215 articles published between 1937 and 2003. ... Overall, the findings indicate that more empirical evidence is needed before conclusions can be made about the percentages of children with autism who are mentally retarded." (Edelson, M.G. (2006). Are the majority of children with autism mentally retarded?: A systematic evaluation of the data. Focus on Autism and Other Developmental Disabilities, 21, 66-83.) (reprint online)

*Addendum, 3/20/07: My criticisms of the arguments of FC-skeptics refer generally to those made in the popular literature. To some extent, such arguments appear also in the scientific literature. However, it is true that the scientific burden for demonstrating the general safety and efficacy of FC has not yet been met by FC proponents. Its possible risks and benefits have been discussed elsewhere, e.g. see summary by FC proponent Chris Borthwick here. Since FC remains an experimental procedure, its use should be evaluated carefully in each case. And, if FC is used, other independent (and less controversial) means of communication should be encouraged alongside it, wherever possible. That said, there do exist people today who demonstrably need FC in order to communicate effectively, and are not getting adequate access to it.

Maybe this could help overcome dypraxia?

From Washington University in St. Louis, via astute pal, redux:

Teenager moves video icons just by imagination

Hands off

By Tony Fitzpatrick

Oct. 9, 2006 -- Teenage boys and computer games go hand-in-hand.

Now, a St. Louis-area teenage boy and a computer game have gone hands-off, thanks to a unique experiment conducted by a team of neurosurgeons, neurologists, and engineers at Washington University in St. Louis.

The boy, a 14-year-old who suffers from epilepsy, is the first teenager to play a two-dimensional video game, Space Invaders, using only the signals from his brain to make movements.

Getting subjects to move objects using only their brains has implications toward someday building biomedical devices that can control artificial limbs, for instance, enabling the disabled to move a prosthetic arm or leg by thinking about it.

continued (link)