Tag Archive for 'facilitated communication'

More Syracuse U. and FC

In “Syracuse, Apple, and Autism Pseudoscience” (Committee for Skeptical Inquiry, 28 April 2016), Stuart Vyse (a) updated the long-standing concerns about facilitated communication (FC) with notes about events at Syracuse (the student newspaper questioned the recommended recognizing the support for FC as an error in judgment and more), (b) provided a history of the rapid prompting method (RPM) and explains how it compares to FC, and (c) expressed concern that Apple’s iPad is closely connected with RPM via an advertisement celebrating a young man who uses RPM and with an organization (Autistic Self Advocacy Network) that expressly touts FC.

Professor Vyse noted that the paucity of research about whether individuals using RPM are communicating independently is concerning. He’s exactly right about this. I shall not tell all his conclusions here. Readers should read his essay themselves. It’s worth it.

Matt Brodhead on halting the spread of FC

While we’re on the topic of facilitated communication (FC or “supported typing” or “rapid prompting”), readers might want to watch a TEDx presentation by Professor Matt Brodhead. As though familiar with TED talks know, this is brief presentation and in it Professor Brodhead focuses squarely on a clear presentation about FC: “We must stop this now.”

Plait on Kouric’s mea culpa

In Katie Couric Apologizes for Anti-Vax Episode, but It’s Not Enough, Phil Plait (DBA “Bad Astronomer”) explains why Ms. Couric’s mea culpa for her giving excessive credibility to the incredible, post-hoc-ergo-propter-hoc stories of parents claiming vaccinations caused problems for their children. Mr. Plait, who branches out beyond astronomy to cover scientific matters in general from time to time, comes to essentially the same conclusion as Michael Hiltzik: No matter how strong her disclaimer, and Ms. Couric’s falls a bit short of being an abject retraction, she can’t take back the effect of having provided the highly visible stage for the anti-vaccination advocates.

It’s coverage like this, the embrace of facilitated communication, and even the pervasive endorsement of learning styles that makes it hard for reason and evidence to make headway in providing services for individuals with disabilities. Those of us who champion evidence-based approaches sometimes feel like were swimming upstream in sewer.

FC goes to MIT

According to Robert T. Carroll at the Skeptic’s Dictionary, several people associated with facilitated communication have been working with Professor Rosalind W. Picard of the Affective Computing research group at the Massachusetts Institute of Technology (MIT) Media Lab. In “Facilitated Communication Infiltrates MIT’s Media Lab,” Mr. Carroll reports about Professor Picard’s connections with supporters of what he says is now called “supported typing.”

Why would MIT’s Media Lab be involved with something that is clearly a discredited pseudoscience?

MIT’s Media Lab’s involvement with FC goes back several years.

A private FC conference occurred in May 2008 involving Douglas Biklen, Head of the FC Institute, Rosalind Picard, Head of the MIT Affective Computing Group, Margaret Bauman of the Massachusetts General Ladders Program (a long time FC advocate; she tried to get the New England Center to use FC in the early 1990s; she just got $29 Million from Nancy Lurie Marks a major, major FC supporter), Martha Herbert of Harvard Medical (supports the view that autism is a movement disorder, justifying FC)…That meeting seems to have been designed to establish liaisons between FC advocates in the Media Lab, the Ladders Program at Massachusetts General, the Syracuse FC Institute [now the Institute on Communication and Inclusion], and the University of Buenos Aires (i.e., Daniel Orlievsky), and cannot be unconnected to this upcoming event in July.

Mr. Carroll has much more on this. Given the problems with FC, one must wonder what a prestigious institution such as MIT would gain from such a connection. Is it possible that the researchers are legitimately investigating FC?

What about other developments from this lab? How valuable are they? One can’t dismiss them simply by association. Does this bracelet that seems to capture galvanic skin response and feed it wirelessly to computers actually have much value? Tracking GSR across time does look interesting to me. What clinical applications might emerge? Will they be beneficial?

You can read Facilitated Communication Infiltrates MIT’s Media Lab in its entirety on the Skeptic’s Dictionary.

Bad science?

In an editorial under the headline “Bad science gets its due,” the editors of the Boston (MA) Globe lament the consequences of Andrew Wakefield’s promotion of a connection between vaccines and Autism. At the end of the piece, the editorialist makes an important point:

But sadder still is the possibility that, in the minds of thousands of parents desperately clinging to hopes of finding a cure for autism, Wakefield’s legend might survive untarnished, possibly even exalted. In reality, his work on autism offers an unfortunate example of poor research trumping the scientific method.

Too bad the writer overlooked some of the other consequences. Here are a few nominees for a list repercussions:
Continue reading ‘Bad science?’

FC discussion

Over on Countering Age of Autism, Kim Wombles has an extended post about research on facilitated communication. She’s not just gathered together the evidence that is familiar to those who have followed the science, but also engaged in discussion in the comments section of the post. Take a look at Facilitated Communication: A Review of the Literature. While you’re there, check many of her other sensible and clear posts.

FC nightmare

Writing for MSNBC, Brian Alexander provided a thorough examination of the history and devastating consequences of some facilitated communication (FC). After making quick reference to the case of Rom Houben that has been in the news recently, in “Dark shadows loom over ‘facilitated’ talk: Opening minds or telling tales? Michigan family torn apart by abuse claims,” describes the wrenching effects of facilitated accusations of sexual abuse on the family of Aislinn Wendrow.

On Nov. 27, 2007, just a few days after returning to school from Thanksgiving break, 14-year-old Aislinn Wendrow created a shock wave by saying her father had “banged” her. Aislinn didn’t say it, exactly; she typed it on the keyboard of a digital device with the help of Cynthia Scarsella, her facilitator and an employee of Michigan’s Walled Lake school district.

The Wendrows’ story is not news; the charges against the parents were dropped in September 2008. Mr. Alexander intertwines the story of the Wendrow family’s nightmare with FC with the story of how FC was developed, adopted, challenged and found wanting, and yet is still being promoted. It’s an example of good journalism.

Link to “Dark shadows loom over ‘facilitated’ talk.” For more about the case of Mr. Houben, see “Deserving a careful test” on Spedpro. For more about the case of the Wendrows, see L. L. Brasier’s “Parents cleared in sex case file suit: Our autistic kids suffered, they say” from the Freep.

Gupta, Autism, and EBD policy

It will be interesting to watch what happens if Dr. Sanjay Gupta becomes US Surgeon General and a chief advisor on public health policy for the Obama administration, as many news sources are reporting is likely to happen. Of special interest to those who are concerned about Emotional and Behavioral Disorders will by how Dr. Gupta addresses issues associated with Autism. Vaccines? Facilitated communication?

As Harold Doherty noted about a year ago on Facing Autism in New Brunswick, in his public career on the news-and-information source CNN Dr. Gupta has promoted discussion of some questions from his CNN pulpit. However, there is a lot more to Autism than providing a forum for people to brandish their often-ill-informed opinions about vaccines.

CNN is one of the world’s great communication and education organizations. People around the world listen to CNN and learn about the world from CNN. Hopefully Dr Gupta means it when he says he wishes to report on ALL aspects of autism. He might start by visiting the Long Island residential care facility where a middle aged woman who could not communicate at all was repeatedly abused by staff until outed by a conscientious co-worker and video recordings. The good doctor could also interview people with knowledge of the life of Tiffany Pinckney who died in Toronto from starvation and neglect while living in “the care” of her adoptive sister. Or he could talk to parents whose autistic children wandered into traffic to be lost forever or who have been restrained physically, left in a brick walled isolation room for hours, or simply sent home from school.

The list could continue: Parents who have taken out mortgages to secure financing for the private therapy their children desperately need but that schools will not provide. Promulgation of best-evidence interventions. Coordination of services across the disparate agencies that affect the services individual children receive. Respite care so that parents can catch their breath for a weekend. Etc. And we haven’t even begun to list medical, behavioral, or educational research needs. (Add other potential foci in the comments, please.)

As the holder of one of the most influential posts in public health, Dr. Gupta will need to wade into some difficult issues. He will have to go beyond simply making statements that solicit viewer interaction while avoiding alienating them, a strategy that serves one well in promoting discussions. Discussions are nice, but US health policy—about Autism and many other issues closely connected to Emotional and Behavioral Disorders—needs bold leadership informed by the best available science. Such leadership is likely to cause dissatisfaction among those who receive their wisdom from anecdotes told on popular mass media shows, give as much credence to evidence-based presentations as to an individual’s illogical assertion of correlation, and embed ad hominem attacks in their anonymous comments on discussion boards.

How would Dr. Gupta respond to questions posed by folks representing diverse views about Autism (see, e.g., Kristina Chew’s note about the participation of the Autism Self-Advocacy Network in discussions with the Obama administration)?

Review Mr. Doherty’s comments from his post about Dr. Gupta in January of 2008. For a sample of the interactions about Autism that have been engendered by Dr. Gupta’s work on CNN, see this discussion of vaccinations. Consider saying something about Dr. Gupta’s CNN pieces on FC.

Updates (of a more general nature):

More: Huffingtonpost post: Conyers: Obama Should Not Nominate Sanjay Gupta;