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DEAL Newsletter 2008 (1) - Skepticism gone septic

Skepticism Gone Septic

Chris Borthwick

If you introduce anybody with communication impairments to facilitated communication training, you'll probably run into a range of reactions.  Some people will accept it joyfully, some people will take a lot of convincing, and some - a small group of diehard critics - will remain utterly unwilling to contemplate the possibility.  This last group is not open to rational argument; and if you doubt that, look at the story that follows.


“Autistic Teen Finds Voice “ the (US) ABC news program reported in February 2008. “Carly Fleischmann has severe autism and is unable to speak a word. But thanks to years of expensive and intensive therapy, this 13-year-old has made a remarkable breakthrough.” Two years ago, working with pictures and symbols on a computer keyboard, Carly started typing and spelling out words. There’s online video of her typing completely unassisted.



Carly at the computer


The program was popular, and positive. “Therapists say the key lesson from Carly's story is for families to never give up and to be ever creative in helping children with autism find their voice.” While there was a lot of positive feedback, though, Carly's typing plainly brought out some experts' deeply rooted anxieties.


    “This looks a lot like facilitated communication to me." one said. " Unless her ABA therapists taught her to communicate by typing, one should be skeptical about her sudden ability to do so. Every instance of sudden and unexpected communicative ability in individuals without any previous functional language skills or instruction, should be taken with a serious dose of skepticism.”

    “I agree. Facilitated communication was proven to be -- though well intentioned--- bogus. I'm curious why the article does not provide details on how this communication is happening. It's not clear. Is she writing in words, symbols, pictures? Did she ever show any ability to communicate (type/write/draw) before? If I were a parent I would be hopeful, but extremely skeptical without more info.”


How much more information do you need?  The article said that Carly typed unaided: the video showed her typing. Not to put too fine a point on it, she was typing. 

We in the facilitated communication training community are used to this kind of scoffing, of course, but that’s not where Carly is coming from. Until now, Carly and her parents have been members in good standing of the ABA – Applied Behaviour Analysis – community, and I imagine that this kind of attack came as something of a shock.

    “Hello everyone --this is Tammy, Carly's mom …. What Carly is doing is not, and has never been FC or facilitated communication. What she has learned to do has been the result of years and years of effort, starting with a Dynavox machine, moving to a Springboard and then a lightwriter. She just prefers the laptop because it makes her look like everyone else who has a laptop. Even before the Dynavox, we had binders and binders of laminated sheets with Mayer Johnson picture symbols on them and the words below. We have always gone under the assumption that she was understanding and since she was so good at navigating her communication binders, we knew she was heading in the right direction from early on --we just never knew it would lead to such a sophisticated level of output. For the record, we may be sitting beside her when she types, or she sometimes kicks us out of the room when she wants to be alone, but we NEVER guide her hand over the letters --what would be the point of that? FC was debunked years ago. Independence for Carly has always been the goal in everything she does, from getting dressed to feeding herself to communicating to us. I hope that clears up any confusion.”


Sorry, Carly's Mom, you’ve rather underestimated just how much the psychological profession has invested in its beliefs. In the words of Jacobson, Mulick, and Schwartz

    "general delays or deficits in language function are closely related to general delays or deficits in intellectual development ... the everyday facility with which people with autism or mental retardation use a language (e.g., spoken, written, or pictorial) is an accurate depiction of their ability to do so ...there is no clinically significant phenomenon that inhibits the overt production of communication and "masks" normative [sic] communication skills (i.e., actual production is representative of "internal" speech skill...) That there is a strong presumptive relationship, in general, between overt production and actual ability is a cornerstone of psychological assessment methodology, statistics, and psychometrics." (Jacobson et al., 1995: 755)


This extraordinary statement, produced by psychologists who completely disregarded both the neurological bases of expressive impairments and the outcomes of the entire field of augmentative communication, expresses in its purest form the presumption of incompetence evidently shared by Carly’s critics. The attacks (from ABA professionals; letters from parents and the public were invariably laudatory) continued unabated.

For Carly to be typing by herself is not sufficient evidence that she's generating the words she types.

    “I am skeptical that this communication is genuine. It looks just like facilitated communication (FC) to me," a commentator who took the pseudonym 'behaviordoc' wrote. "With all that work and training over the years, did anyone ever do a double-blind test of authorship? I don't see anything about that anywhere in any of the reports I've seen or the mother's response. Once done, were the validity tests repeated periodically to make sure that cueing did not develop accidentally as things progressed. Periodic probing of skills, including testing for prompt dependency, would be a standard element of a well-designed ABA program. Moreover, the parents' apparent awareness of the problems associated with FC makes the apparent lack of testing for influence and control even more puzzling.

The author believes that people with autism who cannot speak cannot communicate by typing or writing - hence his antagonism to FC.  The existence of someone who types independently challenges his underlying belief system,  and has to be explained away.
 


It doesn't matter if there is no touching. Influence can and does occur even without the facilitator touching the person. With everyone hovering over the girl as she types, as shown in the videos on ABC and CTV, there is ample opportunity for exactly that kind of influence to occur.

....the facilitator doesn't have to touch the subject to influence the output. Years of mutual interaction could easily create a cued performance of the necessary complexity and subtly to look like real communication but be essentially undetectable without an empirical test.


That’s a claim that someone without any inherent language skills can be cued to type without physical contact.  That’s a very large claim indeed - and one, it has to be said, with has no experimental basis whatsoever. While claiming that it’s impossible for Carly to learn to type, to learn a common skill, the critics feel under no obligation to demonstrate that their alternative explanations for her fingers striking the keys to generate words and sentences are possible, or even plausible. 

Then they add more requirements that Carly has to meet before they will accepte her communication:


Now that Carly supposedly types independently, does Carly type extended output while completely alone? Does she sit by herself and email people? Can she read without someone reading to her? Does she engage in intellectual activities consistent with someone with her apparent intelligence level--buy books from Amazon and surf the internet, for instance. I am afraid that everything I see so far points to this being FC. I'd be willing to be proven wrong. But at this point, what we see in the media just points to this being more FC….”


So now it’s FC if you don’t buy books from Amazon! Are we seeing some desperation here?

    “Carly's mom here again --- a few things --… --to behaviordoc -- I would be happy to provide you with all kinds of documentation and proof that this is not FC. Carly will often kick us out of the room --especially when she is writing to one particular friend of hers in California. She can and has sat by herself and emailed people. When I am sitting with her also and she is on MSN for instance, with her dad who is at work, we never read the responses to her --she reads them and responds. She surfs the net with assistance --she will ask to look up certain things that interest her and she is doing academic work at grade level. A psycho ed assessment from 2 years ago had her receptive language above her age level. She does not always need us to be by her side when she types but she has trouble keeping focus sometimes so having us there does help that. Have you ever watched Autism is a World, or read Strange Son by Portia Iversen. I have no incentive for making this up or embellishing her accomplishments and neither do the huge team of doctors and other professionals who have seen Carly over the years. You are implying that we are facilitating her ability to type telepathically.... not sure how that would work but an interesting theory...”


Carly’s mother did what she could to explain that the procedures used to reach independence did not involve any bargains with Satan.

    “Carly's mom one more time in response to questions about what she used before she got her laptop? When she was 2, we starting with PECS --did picture exchanges for every imaginable item under the sun. Many of the games I bought her had to do with reasoning and logic and were highly visualy in nature - memory games, sequencing, matching -- these were with pictures, words, numbers, etc. We had visual schedules (with the words underneath) for everything she had to do --gettng dressed, using the bathroom, tidying up, meals, going outside, etc. The whole house was also labelled -- my son went crazy with the label maker. Every item was stickered. We then moved to communication binders --we started that by category --food, acitivities, clothes, weather, feelings, etc. She never got to do what she wanted until she used the communication binders to show us. These were laminated sheets we made up with the mayer johnson picture symbols in them as well. We kept that going for a long time and all this time her ABA programs were also teaching her how to spell and read. We created stories for her using the mayer johnson software and didn't just read them to her --she was looking at the pages as well.We kept the binders for ease of use and portability but we were also learning about augmentative communication devices since it was clear her apraxia was so severe. We also taught her some sign language but realized that while we understood the signs, most of the world did not and so that was not going be to a functional option for her. The first machine was a Dynavox, the second was a Springboard and the third was a lightwriter which we used in conjunction with her laptop. We thought she would like the lightwriter better but she preferred the laptop even though it is more cumbersome --but it is what other kids have and that is a concern to …. Hope that helps.”


The situation wasn’t helped by all the people who posted replies without noticing the embedded videoclips.

    “Is she typing everything unassisted, or does someone have to help "guide" her hands to the keys? There have been other "breakthroughs" where an assistant guides the hand and there is doubt if it is the therapist leading the person, or the person themselves.”

    "Writing ability and the understanding of grammatical rules takes an amount of formal learning that seems beyond this girl's reach, exposure, and instruction. This sounds more like a projection of the professional working with her (or fantasy of the parent), a situation that marked another therapeutic hoax that occurred in the population during the early 1990's. Many hopeful parents were devastated by it and never recovered. I think that it is irresponsible of ABC to present this without the requisite scientific safeguards afforded by a scholarly environment. This is so unbelievable that I would have to see video proof of her actually writing the material. Respectfully, Dr Jeffrey Titcher, Malibu, CA"


To which one can only retort LOOK AT THE BLOODY VIDEO, YOU IDIOTS!

And if those commentators were idiots, 'behaviourdoc' - someone with a doctorate in Applied Behaviour Analysis, one would hypothesize - was something worse.

    “Thank you for responding to my questions. I am not suggesting telepathy at all, just cuing. I have seen "Autism is a World" and read "Strange Son." Your mention of these two items is puzzling. "Autism is a World" is about FC. Thus, I don't understand why citing it is supposed to allay my skepticism about this being FC. Sue Rubin did not communicate independently in that movie." [Yes, she did.] "She never has." [Yes, she has.] "She has not offered to settle the question of her abilities with real double-blind testing. [Why should she?]
Portia Iversen’s "Strange Son" is also about FC—disguised as "Rapid Prompting." If you are saying that "Strange Son" parallels your situation, my doubts are only increased. In "Strange Son," we read that Tito can write characters by himself--but not intelligibly unless his mother is present.  [Characters? Tito doesn’t just write ‘characters’ – he writes sentences, paragraphs and poems, with no-one touching him.  He's published three books.]   ....
I would be happy to look at your materials. I have some expertise in this matter, and your CTV friends can get you in contact with me. I think the only way to answer these questions is to do so directly with double-blind and message passing tests such as are done with FC. As an applied behavior analyst, I would love to see ABA work as well as you suggest it has. But, what is reported so far raises too many questions. Thus, I am not only completely willing to have my suspicions proven wrong, I would be willing do the tests myself.”


Somehow the ideal of replicability has been twisted into the demand that Carly must go through any set of procedures any psychologist suggests, and do them over again for anybody who asks.

    “I think the skepticism comes from the fact that this story so closely parallels all those accounts of FC in the past that turned out to be nothing. Carly may communicating independently. But this is not a case well made. … As for money, I can assure you that no one around here is getting rich doing ABA for autism. It costs as much for a school to have a one-on-one facilitator as a behavior analyst. Less, really. In a couple years, if all goes well, the ABA child is doing better and the behavior analyst moves on. FC, in contrast, is forever--and you don't get any of those cool functional independent living skills the behaviorists are always teaching. Getting back to the present case, the questions about Carly could be easily answered with tests of independent authorship. As for FC in general, we see a dangerous fad that is dwindling in popularity but still has the potential to cause immeasurable harm by preventing access to empirically validated treatments …”


That’s 'behaviordoc' again, and it can be seen that the fear is that Carly's case will be seen as giving aid and comfort to FCT. Another supporter, Cameraman, made it even clearer:

    “Is this ABCNEWS inflating a poorly researched and poorly stated story? .....  If this is FC in another form then shame on ABCNEWS. If this is potentially therapeutic to some and not others, then it should be tested too. What is wrong with anecdotal information? Ask a scientist.”


Science, what crimes are committed in thy name! These people seem to believe that their initial assessments are laws of nature rather than poorly educated guesses. Anyone who hadn’t had their brains addled by a higher degree in psychology would be prepared to accept the evidence of, well, someone typing in front of their very eyes as evidence that the person could type. Empiricism used to mean that the scientist (Galileo, say) believed the evidence of their own observations over the speculations of the textbooks; now it seems to be the other way round.

Carly’s mother kept trying, but anyone familiar with the FCT debate could have told her that these kinds of appeals to individual circumstances are red rags to behavioural professionals.

    “To Behaviourdoc --my daughter knows about all kinds of things we have not told her about and she writes spontaneously about them --perhaps those two examples were wrong by your standards but Carly writes about so many things and we say how did she know that? For instance, we told her we were taking her to New York to see a Dr there and she wrote she wanted to see Ground Zero and the lady with the torch. We have no idea she knew these things... I just found out she knew about Aids and she asked one of her therapists recently is she (the therapist) was afraid of dying. Recently on the Sunday morning after her Bat Mitzvah, she was sitting our friend's kitchen table with her laptop in front of her and there were all kinds of people around for brunch and she spontaneously wrote "I want to thank everyone for coming" I told her to take to her laptop around and show the screen to everyone and then she wrote, "Mom, you do it". There were witnesses by the way... I don't know why you doubt her so much… why don't you have CTV send me your contact info and I can talk to you in private. The producer of the segment is Elizabeth St. Philip. We are clients of the Behaviour Institute. Feel free to talk to [the staff] about Carly.”


No, that’s not what they’re looking for. If Carly does tests and passes them, that’s simply proof that they must be insufficiently rigorous tests. Only tests that confirm the diagnosis of failure can be accepted. What 'behaviourdoc' is saying is that he will believe any experimental procedure that is intrusive enough to prevent Carly communicating, and nothing else.

    "Several individuals have been concerned that Carly's skills are not independent and are being directly influenced in suble ways by parents or teachers. Readers need to know that this has been the case with so called 'breakthroughs" (one false hope was called "facilitated communication") in the past. … Carly and her parents could perform a great service to other autistic individuals by allowing her to participate in a carefully designed scientific study, conducted by university professionals trained in applied behavior analysis, education, and psychology, who would determine exactly what her current abilities are and if they are independent of the influence of others.”


The sheer arrogance of these researchers is breathtaking. They, and only they, will grade people with autism; they, and only they, will allow someone to pass as normal. Tell me again why Carly should be willing to participate in unnecessary experiments that are designed on the basis that she is a passive dupe and her parents a fraud?

    To Carly's Mother--Thank you for the additional response. ....... Please know that I am full prepared to believe that Carly's skills are genuine. But, I think this would be best established by direct testing rather than relying on indirect evidence. The concern arises from the manner the story is being told. The CTV and ABC reports read almost exactly like all those stories about instant literacy from the FC world. The various emails I have gotten have the same feel. This has caused a substantial amount skepticism about Carly’s case among behavior analysts--who worry about such things--and should be your allies. They would obviously love to see this kind of success arise from applied behavior analysis done patiently and well. … it becomes important to take great care in how we deal with such things. The bar for accepting autism “breakthroughs” is now so low that just saying so has become more than enough to “prove” almost anything: from FC to detoxifying shoe inserts. …Given that there are real stakes involving real people, I think it behooves all of us who promote empirically validated treatments to also promote empirically sound standards of proof, even on TV.


It’s impressive. Carly’s mother is, as I say, a paid-up member of the ABA team in good standing, Carly is typing without any support, and she still attracts hostile suspicion from behaviourist anti-facilitation freaks. 

It's certainly a warning to anybody working in the FCT area. I'm reminded of the Robert Altman movie of Chandler's The Long Goodbye, where the villain threatens the detective Marlowe by bringing him to the villain's lair, shouting insults at him, breaking a bottle against the wall, then suddenly smashing his own girlfriend across the face with it, screaming "Remember, her I love! You, I don't even like!"  If this is what ABA does to its friends, how is it going to treat its enemies?

At the end of the website correspondence Rosemary Crossley tried to inject some common sense.

    "Way to go Carly! For someone who works in augmentative communication it's very interesting to read the list of communication aids and strategies you used from the age of 2 onwards. It's a common list, progressing from simple low tech cards or boards, through a symbol-based electronic communication aid, to a device allowing you to spell in addition to selecting symbols (the Springboard) and then on to a portable keyboard-based communication aid (the Lightwriter) and a regular computer with text-to-speech software. 
As I said, it's a common progression - but for children with cerebral palsy, not for children with autism. There's a presumption that children with autism cannot go beyond stage one, simple low tech symbol cards or boards, and relatively few of them are ever given the opportunity to use any electronic communication aids, much less progress through a sequence of aids over a 10-year period, as you did. I suspect that if more children with autism had access to the intensive communication training provided as a matter of course to children with CP you'd have a lot of penfriends.
Congratulations to your parents for giving you the opportunity, and to you for persevering."

Quite so.




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