6/30/2010

Facilitated Communication Quackery gets Journalistic Promotion in Annapolis

Lest you think that the AoAers have a hold on promoting woo or, just as bad, think that the mainstream media had potentially wised up (Kudos, Tsouderos!), a local reporter in Annapolis has an article up on the miracles of FC and how families in the area will now be able to use FC with their nonverbal autistic children (and it appears, potentially have the state government pay for it?). Never mind that facilitated communication has been thoroughly debunked. Never mind that it is in its own way a horrible abuse of  disabled people, to co-opt their communication rather than provide them with reliable methods that ensure the authorship is genuinely their own. After all, much as Age of Autism has shown us, in the autism community, far too often it isn't about the individual with autism at all. It's about the parents.


Want to sell something to a parent of an autistic child? Give them what they want most. Woomeister after woomeister delivers on this. Give them hope, tell them they can recover their child. Better yet, tell them their child is in there, underneath the autism and FC will let you talk with them.


Woodards describes it clearly but misses it entirely:
"But Lester and Linda Enoch of Bowie are convinced of its merits. Last year, a Syracuse representative met with their 14-year-old son, Marcus, to determine if facilitated communication would be right for him. In the course of the conversation, Marcus cried, said he thought the representative was a nice person and said he was frustrated at not being able to be understood. He also told his mother that he loved her."
Want to hook parents? Just provide what so many parents of children with severe autism and intellectual disability want more than anything to hear: their child is locked in, just waiting to be freed. Who's going to walk away from FC then? Really?


Want to make sure to keep people ready to believe and on the defensive? When you make your video promoting FC, make sure to suggest that anyone who dares to question the validity of the communication wants to deny autistic individuals communication. After all, only a big bad meanie would suggest that the communication isn't genuine; make sure you say the skeptical scientists are in essence calling the autistic individual a liar (never mind that the scientists aren't questioning the autistic; they're pointing out that the facilitator is the one creating the communication and in effect taking advantage of desperate parents and denying the autistic individual the chance for authentic communication).


I don't know if Hartman doesn't get a lot of traffic yet to his site, or if the people he's getting there already buy into the warped view of autism, but this gem is offensive:
"People with autism have something to teach all of us: We can either continue to justify the way we think or behave and remain autistic or we can explore the creative, artistic nature of who we truly are." Stephen C. Hartman, LCSW-C
Who else reads this as autism being bad and that it can teach us how not to be? Hartman doesn't seem to think much of autistic people, really: "Whole Self Center’s philosophy suggests that every human being, even a child with autism, is more than a body with a brain."


And the reporter, Woodards, doesn't seem particularly interested in looking into the legitimacy of FC:
Critics question the validity of the method, since the user's hands are being held over a keyboard by a parent, caregiver or facilitator, leading some to believe they are being guided in their responses. In 1994, the American Psychological Association issued a resolution in which it called the method an "unproved communicative procedure with no scientifically demonstrated support for its efficacy."
 As I responded in an email exchange with her, they do a great deal more than question: 


Critics don't question the validity of FC; it's been empirically validated that FC is facilitator co-option of communication. Big difference. You furthered Hartman's agenda and linked to his website where folks can by the video he's made. You promoted quackery instead of examining whether he had any legitimate claims. Parents being convinced is anecdotal and irrelevant to whether the communication is genuine. Study after study has shown it's not genuine. The time, effort, and money wasted on a debunked therapy that could be placed in sound, scientifically validated methods of communication can't be regained.


Your article promotes quackery and has the potential to do real harm to autistic individuals who will find that their voice will not be heard because the facilitator will be the one talking.
One paragraph on critics questioning the validity is about as soft-peddling as one can get. There is extensive research torpedoing the legitimacy of facilitated communication, some of which I've touched on in several places. More statements from organizations which have come out against FC can be found at BAAM. There is no legitimate use for FC and if the reporter had done even a cursory examination into it, she would have discovered that clearly critics do more than "question the validity of the method." They've empirically validated that it is facilitator co-option.


No, it appears that this news article isn't about parents, and it certainly isn't about autistic individuals. It's about Hartman's businesses, though: 


"Hartman's Whole Self Center is a Maryland Medical Assistance Autism Waiver Provider, which means employees go around the state to provide services to autistic children. The agency's partner company, New Ground Publishing, was behind the "Kayla's Voice" video. In it, the California girl finds her voice as she learns to type to talk. Another video, "We're All in This Together: Understanding the Humanity of Autism," aims to help viewers better understand autism."
And at the end of the article, there's this:

"Both videos are available at www.newgroundpublishing.com."
 When you go to the site, you can watch trailers for two videos that will set you back nearly 70 bucks if you're tempted to buy them both. And of course, viewer recommendations there are by the same individual whose quote is the closing line for Woodards' article:
"Once they're open to it and convinced that it's actually their kid inside that's speaking, it's not that hard," Gabor said. "People facilitating need to practice in order to learn the rhythms of the motor movements of the person that needs the help."
In that one line, you have the quintessential reveal. Once you convince the parents, it's just not that hard. You know, like Wakefield, the Geiers, and Haley. You appeal to their gut, what they most want, and then you've got them. Hook, line, and sinker. It's just that easy.

3 comments:

kathleen said...

Well done.."once they are open to it and convinced..." yup, says it all.

Niksmom said...

Kind of makes me wonder if the reporter has some relatinoship with Hartman/the center even if only tangentially. Or if she's just THAT crappy and biased a reporter.

Roger Kulp said...

Want to sell something to a parent of an autistic child?Give them what they want most...Give them hope,tell them they can recover their child."

Did you read the link I posted the other day? Look at what it says about being nonverbal,look at what it says about a SPECTRUM of severity.I think a lot more "autistics" have Phelan-McDermid,or some other chromosome22 disorder than we think,but I also think most parents do not want to hear their child has an incurable genetic disease,when they can go to some woomeister or quack,who will tell them the kid is "vaccine damaged",and can be "cured".