Corrections to the blogosphere, the consensus, and the world

Sunday, February 24, 2008

Skepticism gone septic

“Autistic Teen Finds Voice “ the ABC news program reported. “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, she started typing and spelling out words. There’s online video of her typing completely unassisted.

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.” No, they don’t. The letters page at the ABC online site brought out the experts’ voice, and it was unremittingly negative.

“This looks a lot like facilitated communication to me. 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.” one said.

“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.”


We in the facilitated communication training community are used to this kind of thing, 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’d expect 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 facilitate 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)
.

The attacks (from professionals; letters from parents and the public were invariably laudatory) continued unabated.

“I am skeptical that this communication is genuine. It looks just like facilitated communication (FC) to me. 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. 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. 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….” said a commentator who called themselves behaviordoc.


That’s a claim that someone without any inherent language skills can be cued to type without physical contact.

"As for influence, 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. This is why we still teach about Clever Hans in our intro psychology classes--although FC is actually starting to take the place of Hans in our discussions of unconscious influence and the need for good experimental control and double-blind tests. I used to do a "mind reading" magic trick involving card guessing that involved subtle cues provided by a confederate. With practice, 52 cards can be done--that's twice the number of cues needed to type a whole alphabet. The real trick was finding who in the audience was giving me the cues. No one ever did."


That’s a claim, it has to be said, with no experimental basis whatsoever. Clever Hans, the example generally brought forward to support this view, was a case of a horse who could choose from a list of numbers when given visual cues. It’s possible to conceive that method working with a mode of communication like that shown in The Diving Bell and the Butterfly, where the communication runs through a list of letters and waits for a signal. Typing independently, however, is several orders of magnitude more complicated, and cuing can only be done, if it can be done at all, if the person being cued has a strong structure of language to work with already – in the same way that behaviourdoc had ability in reading card cues.

“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 MORONs!

And if those commentators were morons, Behaviourdoc 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. She never has. She has not offered to settle the question of her abilities with real double-blind testing. 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. There are indications throughout that his native abilities are more limited than what is claimed about him. He can't answer questions about things his mother doesn't know about. He completely failed the one valid message-passing test that was done. His mother's response was not to investigate further, but to avoid further testing and make sure she only asked Tito about things she had already supposedly taught him. In "Strange Son," we also find out that Iversen's son can’t provide answers about things his mother doesn't know. On her website, Iversen hardly tries to hide the fact that she’s doing FC:http://www.strangeson.com/playVideo.php?id=61I 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 must Carly go through any set of procedures anybody wishes to suggest, and do them over again for everybody who asks, over and over.

“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 their 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? Kind of loose with the facts and not very aware of the history of FC and the people it ruined. Behaviordoc, maybe you’re right, maybe this is the market that FC always dreamed of having. To be functional enough to express oneself using something like FC? It isn't the panacea they once predicted. I think it is Syracuse university I think that released FC on the world. I hate to empower them. 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 Dr. Walton Allen or Dr. Hundert 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. I have already been in contact with CTV. I can also say that Nicole and Joel have been friends of mine for many years, going all the way back to graduate school. In a spare moment, Nicole can tell you how we met at an ABA convention at the Opryland Hotel in Nashville. 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.

9 comments:

Anonymous said...

I deal extensively with autistic children and I can say that the experts are often anything but. Don't talk out of negativity about something you don't understand. I've seen non-verbal autistic children suddenly go verbal with nothing but help from their parents when so-called "experts" said the children would never speak and the parents were delusional.

. said...

Mmmm. "Experts are often anything but." Anonymous, dear, yes, that's exactly what I said. I agree with you. Read what I say more carefully.

As a more general comment, it's interesting, not to say depressing, that I'm a much worse writer than I assume, being not very good at getting a simple message across.

Which message, I suppose, just to clarify, is that even autistic children who don't speak can generally be taught to communicate by some form of alphabet-based system.

kim said...

Thank you for your response to the Carly skeptics. As a parent of a nonverbal 7 year old child with moderately sever autism, I am routinely surprised when she suddenly demonstrates something new - an interest in playing on a Nintendo DS or looking at Justin Bieber or iCarly (all things I don't have in the house). In spite of seeming "out of it" or off in her own world, my daughter is actually processing the world around her much like her twin sister. So, when I look at what Carly Fleischmann accomplishes on her laptop I am not surprised. Rather, I find her story believable without "expert" verification. The inability to use language and communicate in the typical, normative manner does not equate with not possessing the intellectual capacity to think or express oneself in a sophisticated, albeit different, manner.

Anonymous said...

Carly Fleishmann's ability to type independently is clear. The reason people have jumped on this as skeptics is because the media, in their desire to boost a story, try to make it seem that this is a "miracle" that just suddenly happened one day. That is far from the truth, which is , years and years of private training that culminated with the breakthrough that finally happened.

The problem with the story is no one questioned why our public school system fails our children such that Carly's success was only made possible through expensive private
lessons.

Schools teach BLIND students to use braille, the DEAF students to use sign language and lip reading, BUT WHY NOT TEACH AUGMENTATIVE COMMUNICATION TO THOSE WHO ARE MUTE OR WITH LIMITED ABILITY TO SPEAK?!

My daughter is like Carly. the school system presumes that she is very developmentally delayed because they lack the training and expertise to teach her to communicate beyond the use of pictures (PECs). She needs to be trained to use a communication device, but there is no commitment or training of staff on how to do this. Each year she has a new teacher and we are back at square one, with the teacher and staff knowing NOTHING about using these devices!!!

Why are we discriminating against students who are ASD and non-verbal? Why do we presume they are developmentally delayed? In fact, more than 50% of Autistic people are non-verbal. those who are taught to master a communication device, such as Carly, very often show as functioning at least 4 grade levels above what was assumed before they mastered the device!

This is a travesty to our children. I do not have the financial resources to do what the Fleishmann's have managed for Carly-- so my own daughter continues to languish in the public school system. this is truly reprehensible and discriminatory.

Google "Wretches and Jabberers" to see a video where two men with ASD are trying to spread the word about people with ASD who cannot speak but can use keyboard devices. Then you will see there are others like Carly Fleishmann. How many more ASD people are trapped in their bodies in need of such training to use devices to communicate? When will our education system finally do what is right by providing this training?

. said...

It's not even just that the schools and the centres are failing in that they don't provide communication assistance: they actually oppose it, they're actually prepared to die screaming in the last ditch rather than allow it through. I'm not at all sure why it's such a central element in their discourse, but I've found out the hard way that it's a bloody hard way.

Anonymous said...

i was a TSS for a few years and thought the docs weren't interesting in seeking a cure for autism spectrum disorders, rather they were interested in long expensive treatments.

on the other hand, if this is only a product placement for dynavox, f you, that company sucks.

. said...

Do you mean "is Carly a promo for Dynavox" or "is this post a promo for Dynavox? Can't say I follow your logic, anyway.
More specifically, there are a lot of AAC devices out there, most have their pros and cons, it's a matter of adjusting the device to the particular case, but any AAC device is probably better than none. What do you have specifically against Dynavox - the machines and/or the company?

Erik said...

First of, my English isn't perfect, haven't written in English, in years :)

What I personally find interesting is the problem all of the 'scientists' seem to want to overstep quite easily.
In every experiment conducted by all psychologists (or other human behavior scientists)a problem that has to be accounted for are things like the importance of environment.
There is, undoubtedly, an effect of all kinds of things.
Some of those things are often times dismissed because after careful investigation it became clear these influences were of such minimal influence they couldn't be regarded as a 'influencing factor'.
One very easy example of this is the room in which the subjects are doing the tests. Because every subject experiences the same room and the effect of the room, in itself, is very small, we don't consider the effect of the room in itself.
However, these are assumptions we are allowed to make with 'normal' subjects.
Carly is not a 'normal subject'. Besides her physical and mental differences with the rest of us, she has also experienced a completely different upbringing.
Therefore she does not react as much alike as other people do to different scientific methods.
This does not, in any way, mean we are incapable of researching what her abilities are, if she really writes autonomously, but it does mean that conventional research methods have to be reassessed.
And more specifically, in my own opinion, the absence of her parents combined with the presence of others, whenever her abilities are being put to the test, is the biggest mistake a researcher could make.
This girl/woman isn't used to different environments like we are, her parents and caretakers have been much more and much longer been of influence to her and will be just that for many more years (hopefully not forever). So testing without parents will be much more stressfully for her and will influence test results much more negatively then positively.

All this said I just want to congratulate the blogger for taking a stand! :)

Erik said...

First of, my English isn't perfect, haven't written in English, in years :)

What I personally find interesting is the problem all of the 'scientists' seem to want to overstep quite easily.
In every experiment conducted by all psychologists (or other human behavior scientists)a problem that has to be accounted for are things like the importance of environment.
There is, undoubtedly, an effect of all kinds of things.
Some of those things are often times dismissed because after careful investigation it became clear these influences were of such minimal influence they couldn't be regarded as a 'influencing factor'.
One very easy example of this is the room in which the subjects are doing the tests. Because every subject experiences the same room and the effect of the room, in itself, is very small, we don't consider the effect of the room in itself.
However, these are assumptions we are allowed to make with 'normal' subjects.
Carly is not a 'normal subject'. Besides her physical and mental differences with the rest of us, she has also experienced a completely different upbringing.
Therefore she does not react as much alike as other people do to different scientific methods.
This does not, in any way, mean we are incapable of researching what her abilities are, if she really writes autonomously, but it does mean that conventional research methods have to be reassessed.
And more specifically, in my own opinion, the absence of her parents combined with the presence of others, whenever her abilities are being put to the test, is the biggest mistake a researcher could make.
This girl/woman isn't used to different environments like we are, her parents and caretakers have been much more and much longer been of influence to her and will be just that for many more years (hopefully not forever). So testing without parents will be much more stressfully for her and will influence test results much more negatively then positively.

All this said I just want to congratulate the blogger for taking a stand! :)

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