 Thank you. It looks like we're right at 430, so I'd like to welcome you all. Looks like we're right at 4.30, so I'd like to welcome you all to the NeuroEthics seminar for June. My name is Toss Cochran. I'm the director of NeuroEthics at the Center for Bioethics. Welcome. We've got a big response rate for this one, so I suspect we've got a topic that is of great interest to many of you. I see a lot of new faces, which is great. Let me write the word about Center for Bioethics and all of the presentations that we have and please check the Center for Bioethics website frequently for all of the events that we've put on there. For those of you who don't know, I am a neurologist at Brigham and Rubens Hospital, and the topic that we're going to talk about tonight is one that touches a little bit on my practice. And our speaker tonight caught my eye in a blog post that he wrote about. I'll introduce him in a moment. But the topic for tonight is a technique called facilitated communication, which is a technique used to communicate with people who are unable to communicate for a variety of reasons. Patients with severe brain injury, patients with severe autism who can't communicate via other means, attempts are made to communicate with them using this technique called facilitated communication or FC. And a famous case came to mind, and our speaker, Dr. Lily Dunwell, I'm sure I'll give you a little detail about it, of a gentleman who was thought to be in the vegetative state, presumably completely unconscious, was being spoken with by means of this technique. And most neurologists who heard about the case and saw a video of this communication technique immediately or had some skepticism about whether this technique was something that could actually be said to work. And so that is a fascinating topic, whether it turns out that this technique works or whether it doesn't, it's fascinating. And it has great practical implication for many types of patients who are unable to communicate using more traditional methods. And so we've got a terrific speaker tonight, Dr. Scott Lillian-Feld is a psychologist at Emory University. He is the Samuel Kenner Dobs Professor of Psychology there. He's also the Associate Editor of the Journal of Abnormal Psychology and the Archives of Scientific Psychology. And suddenly I find interesting, you'll share some detail about it. Later he's also a fellow of the Committee for Skeptical Inquiry. Dr. Lillian-Feld will be a panel of one tonight. Our second speaker, Dr. Howard Shane from Children's Hospital, apparently had the first flight of his flight home today, canceled on him, and so he's going to be unable to make it. So the good news about that is I think it opens us up for a little more time for questions and answers. As usual, we have 90 minutes for this portion of our program. And then afterward we will be having a dinner here in this room. We'll rearrange the room. And all who are here are welcome to stay and join us for dinner and some continued conversation. As usual, thank you to the Harbor Brain Initiative and the Mind Brain Behavior Group for their support of the neuroepics seminar. So I'd like to welcome Dr. Lillian-Feld to come tell us about facilitated communication. Thank you, Toss. It's good to be here. So I should warn you, I initially, because I thought Howard was going to be here, I initially prepared about a half hour talk, so I had to talk really slowly, which is not something I'm very good at. Or I kind of prepared some more slides, but this will be good because I'll have a little more time for discussion on questions and so on. So I probably won't take up the full hour or so, but I'll have a good chunk of it. So a little survey before we start. How many people are slightly familiar with facilitated communication and know a little bit about it? How many people know a lot about it? I think I've never heard of it. Okay, so it's interesting because informally, I teach introductory psychology at Emory University. Informally, about 15 years ago or so, I would ask my students how many of you heard of it, and maybe two-thirds or so, now virtually no one has heard of it. So whether it's a good or a bad thing, I'm not so sure. I'm actually inclined to think it's a bad thing, although we can talk about that. But I think, as we'll see, I have my own particular take on this. Not everyone will share my take, but I'll be directing what I believe. I'll also try to tell you where I think some people might disagree with me on this. My own take is I think this is a very powerful, in some ways disturbing, cautionary tale. I think it parts some really important lessons for us, as scientists, as practitioners, and teachers, as well as laypersons. That's my view and something I teach my students about, because my view is, one of the things that comes up a lot when I teach my students about statistics and research methods. A lot of my psychology students hate learning about research design if I'm boring. And they often ask, why do I need to learn this stuff? Why is it important to learn about research methods? And I tell them, if you want to know why it's important about research methods, learn the story of facilitated communication, because it parts some really valuable lessons. One of my favorite quotes from the past is a quote from one of my favorite writers, William Faulkner's The Past is Ever Dead. In fact, it's not even past. And the reason I bring this quote up is because I think sometimes in academia, we have a tendency, myself included, to assume that if a technique has been discredited, if we have largely debunked it, it is in effect dead. We don't need to worry about it anymore. But in fact, what we'll see is that in our field, there's been a curious tendency for techniques that have been, in essence, scientifically debunked, dispelled to still live on despite our best efforts. And this is hardly new. So to me, the great unsung heroes of psychology, very few modern psychologists know about them anymore. Joseph Jastrow, University of Wisconsin, talked about this at the turn of the century. Great book, Fact and Fable in Psychology. It's interesting to read this book and basically the lyrics have changed, but the notes are the same. Basically, the same themes keep recurring, the particular fads and fables that Jastrow is talking about in the beginning of the 20th century, by and large are no longer with us, but pretty much the same themes, the same ways of thinking that people are prone to. And by the way, I'm going to argue we're all prone to, because I'm susceptible to some of these fads and fables, too. I think you are as well. I've always been there. I used to edit a journal in the longer, no longer exists, but the scientific review of mental health practice was actually supported by many for skeptical inquiry. And in that journal, one of the things we did was to track different fads, new techniques that were popping up and so on. And even though I was really on top of that stuff back then, I don't know quite as much as I once did, I couldn't keep track of it. There were just so many fads, so many unsupported techniques, in some cases, it might be dangerous techniques that were popping up for different disorders, PTSD, schizophrenia, depression, you name it, that it was almost impossible for me to keep track of it. Barely a date would go by literally when some other technique would not come into my email. And I'd argue that a number of fields, my own field of psychology, I think psychiatry, perhaps neurology to some extent, too, have long had a preoccupation with fads. Now by definition, if you read the way fads are often talked about, they're usually assumed to be short-lived. So at least when I think of fads, I think of like hula-hula vermin. Anybody remember pet rocks? Things that are really big for a while, they kind of go, they kind of peak, and then come crashing down. But I'm going to argue that that's not necessarily the case, and that in our field of facts, some things that we've all thought about as fads actually have remarkable state power despite scientific evidence. And that maybe is a bit hard for those of us with value of science to take, because I think we assume, and I think we've made the mistake, and I had really come around on this big time over the years, I used to make the mistake of assuming all I had to do as a scientist was play a role in educating the public, and my job was pretty much over because people will listen to what we have to say, will listen to evidence, but I think there are a number of cases, one to give a whole talk on this, that show that's not necessarily the case. Two, I'll mention here briefly, suggestive techniques like hypnosis, repeated prompting, queuing of memories, so I'll choose here to recover supposed memories of child sexual abuse. To me that is a technique that I believe has been clearly shown to be dangerous and is not warranted, but it still goes on. In fact we recently published a survey showing about 40% of psychologists and mental health professionals still believe that one can use suggestive techniques to debate recovered memories of early abuse. I don't think that is a well-reported view, I certainly think there is debate about whether recovered memories exist, we don't need to get into that, but I do think we should all agree that these very suggestive techniques are dangerous. The other example are DARE programs, drug abuse resistance education programs, which are remarkably popular according to their website, checked again yesterday, 75% of school districts in the US have used DARE, it's in use in 43 countries at least that may be a conservative estimate. They're all over the place, you can see in Atlanta I can see police cars with DARE stickers as you may know in DARE programs uniform police officers come in to warn kids the dangers of drug abuse, remarkably popular, remarkably popular among the public politicians and so on, yet we know that research evidence shows that DARE programs do not work, they've been convincingly shown not to work in multiple controlled states, and in fact some suggest that they may be harmful that that's a separate issue we won't get into here, but at best they are in essence useless, yet they still remain remarkably popular. So I did a couple of common misconceptions I want to begin with here before talking about autism and facilitative communication for it. I think a lot of psychologists assume and I think I did as well that once fads have been debunked they're gone, they will disappear and I think that's really a view that I think is in many ways quite misguided and I think also we forget those of us in academic settings forget that a lot of people and most people don't read peer-reviewed journals most people don't even know what peer-reviewed journals are and I think we may assume that well once a technique is more or less vanished from the pages of peer-reviewed journals it's no longer widely practiced and again I don't think that is necessarily the case because at least in my own field of clinical psychology I don't practice anymore I've been practicing for a while but I still maintain a connection to the practice community in Atlanta and there is I think in a lot of these settings in the psychological field I think in the educational field too really an underground world of clinical educational practice, psychiatric practice sometimes too that we often just don't know about it's often very hard to know about it's kind of this dark underbelly where people are practicing things these are people who don't go to academic conferences they don't publish in peer-reviewed journals they don't read peer-reviewed journals and yet they're in many ways doing most of the practice out there and there's a real disconnect why are fads popular? I'll give a number of reasons later but what I want to focus on here are what Dodney and Henderson have called epistemic duties and this is hardly the only reason but I think one reason fads are popular I'm going to argue here maybe somewhat controversially that many mental health professionals are not aware of or not sufficiently cognizant of the importance of epistemic duties and by epistemic duties what Dodney and Henderson mean is a basic responsibility a silver responsibility to acquire and apply accurate knowledge basically the responsibility the duty to be a knowledge expert again I was trained in clinical psychology at a wonderful university I took a course released a course of professional ethical issues and I never, not only did I hear that term middle of that term was not painted about back then that's fine but even the very concept of that as an ethical responsibility was not something that was really even in the air for me the ethical responsibilities were don't sleep with your clients don't get drunk in the middle of a drunk to your therapy sessions don't have dual relationships all those things are very important but also just as important I would argue is the ethical responsibility to act in accord with the best existing evidence and to constantly acquire existing evidence that is a deep-seated ethical responsibility that I think is often not focused on nearly enough so a quote from their article one acknowledges if you believe in this kind of epistemic duties one acknowledges one's beliefs may be an error and one seeks to rigorously criticize one's beliefs to see if they're an error in native revision and I agree with that I would go even a bit further and I think McDonough and Heatherson would agree with me I also think some of this involves a deep-seated awareness and I'll get back to this later to try to become aware of one's own biases and propensity to bias to me that is in some ways the single most important epistemic duty that we all have now in fairness and some people might criticize me here because in fairness some people would say well but this isn't a totally new concept but it's not entirely new so in my field the APA American Psychological Association has a ethical principle some codes of conduct that's revised every once in a while so there are a couple of different sentences you can pull out from their codes of conduct 3.0 2.0 through a maintaining competence Psychologists undertake ongoing efforts to develop and maintain their competence by the way the wording of these things always strikes me as odd it should read should undertake but it's almost written as though they all do that which isn't true but in reality what they're saying is Psychologists should undertake ongoing efforts to develop and maintain their competence 2.0 for Psychologists work is based on established scientific professional knowledge of discipline and it sounds kind of good and disagree with us kind of like mom and I will pie or I was going to argue with that kind of stuff but one problem here is they don't really outline what competence means or what the proper scope of professional knowledge is and that's one big problem because it's very easy for somebody to say yeah I'm competent I know my stuff but what word do I need and I don't think that's really enough to ensure that clinicians are going to take epistemic duty seriously so this brings us to autism spectrum disorders it's now called in DSM 5 I'll just use the term autism for short autism as I'll argue later has really become maybe more than any disorder a fad magnet for fads of many kinds and then there's some potential reasons for that that we'll get to later one obvious one is that it is a very severe disabling disorder and there is no cure for autism there are partial treatments for it but there is no cure so it's understandable that parents and other loved ones are desperate I would too I feel very good friends with social and autism spectrum disorder and I would feel I would want to do anything to help my kids and I probably would fall prey to the seductive charm of fads particularly when they claim to be quick fixes so this brings us to facilitate a communication for autism which I'm going to argue is one such fad and I'll talk about history Howard was going to talk about history tonight but I'll try to do some of the work for him so started in Elburn Australia Rosemary Crossley who was an advocate for individuals actually at that time not so much autism ironically she worked with people with cerebral palsy and other people with severe disabilities at St. Nicholas Hospital and in Elburn claimed to have developed a technique a radical revolutionary technique to help people with severe physical disabilities that precluded speech so these were people who were incapable of verbalizing words in most cases and by the way depending on one's criteria for autism a large percentage of the old days it was like three fourths but as we know the criteria for autism have shifted now it might be down to like 20% or something individual autism cannot speak but they almost all have linguistic deficits and some of them are as it's mute and can't speak at all now Doug was a sociologist at Syracuse University recently retired visited crossley Crossley began doing this work in the late 70s was continuing it through the 80s Bicklin visited her from Syracuse and was startled by her results and I'll explain in a minute what solicitation is if you're not familiar with it and argued that in fact this remarkable technique this breakthrough could be extended to autism in related conditions and in doing so Bicklin made a dramatic and rather bold assumption he basically argued that we in psychology and my colleagues in neurology and psychiatry really had it wrong all these years that autism is not primarily a mental disorder it's really a disorder movement that fundamentally it's a motor disorder so according to them there's a condition which has never been shown really to exist called developmental apraxia dyspraxia that somehow prevents individuals of autism from articulating words they can't speak very well they often have trouble pointing so there's a motor condition and the assumption here is actually deep down even though some of these individuals are non-verbal and even though sometimes their tested IQs are 20 or 30 they're actually of normal intelligence that's the Bicklin claim really remarkable radical claim and I think we throw the cutian phrase paradigm shift around rather loosely but if there were a paradigm shift in autism this was it this had to be it because after all facilitating variation I think people missed this point it was not merely a remarkably effective intervention but it shook to the core our very notion of what autism was we all had autism wrong completely wrong all this time these individuals were in essence completely cognitively emotionally normal people trapped inside of a non-functioning body that was the claim and there were when Bicklin began to introduce FC rather boldly to the US in the early 1990s a revolution to coal there were stunning successes in communication reported everywhere around the US Canada other places and we don't know the exact number of people who received FC we never will but it was certainly administered probably tens of thousands of individuals hundreds of school districts how does it work but the individual again we're going to assume we're focusing mostly on autism here although again people extended to other conditions as well still do but it's certainly gotten the most currency in autism the individual autism here shown on the left is presented with a keyboard letter pad some other kind of device and with the aid of the facilitator shown on the right the individual ostensibly can now type out letters words, sentences, paragraphs and so on the idea here again is that the individual with autism because of this dyspraxia has a hard time moving and steady the hand so all the facilitator has to do is provide a little bit of guidance and resistance to the hands and fingers and the person can then type out the correct words and I can't it's hard to overestimate how radical the findings were because these were individuals and then who could not be moved who could not be moved by some of the sentences that were produced these were individuals who had never communicated with their parents, parents understandably desperate to communicate with these individuals and many of the sentences that first came out were just heartbreaking like mommy I've always wanted to tell you how much I love you daddy I can finally talk to you this is the most important moment in my life these were sentences that were coming out often quite beautiful many of these individuals began to compose poetry and some even wrote books facilitated books with the aid of facilitators and began to enroll children that were basically thought to be severely intellectually disabled we're all hoping given up we're now enrolling being mainstream to regular classes and taking classes where they were doing very well just with the rest of all the kids here's where we can get this to work here's a little video clip do I need to exit out of this one or can I do this one try clicking on one I'm not going to show the whole clip but you can get some sense of how this works by the way you see the actually this one sounds not so important just watch it if someone is going to support it typing now I'll talk about it later what are you noticing by the way about the children's faces and heads which you'll notice which is interesting and we'll get to this in a minute in some of the cases the kids are actually not looking at the keyboard as they're typing sometimes they are sometimes I don't have a mini center here if you're curious about it studies show that even experienced typers cannot type on a keyboard unless they're looking at the keyboard because you have to have your fingers set and you've probably discovered it which I've done sometimes how lazy have you had your fingers set on the wrong keys everything comes out nonsensical so that's that's basically how it works just click on that click on that window that's sticking out at the top there put this guy here maybe pause this first yeah thanks this one here sure on that there okay definitely not on that first thank you so that's a sense of how it goes and now it's stuck again let's see we had this little problem before sorry sorry folks thanks thank you Tom alright we'll figure that out we have one more little video clip thank you so anyway that's Doug Bechler who was at Syracuse University for many years recently retired so he founded the Facilitator Commission Institute in the early 90s and what was notable I should point out is that this institute was founded before there was a single control study on FC so confident that it worked and was a breakthrough that they felt comfortable doing that by the way I sometimes talk to colleagues about this and many of them assume that this institute no longer exists so that's not quite true so there is no longer exists in its name but there is an institute at Syracuse now called the Institute on Communication and Inclusion which is more or less the same institute's broadened out a little bit and you have to dig around that the term FC Facilitator Commission is actually on the website probably but it's still there even though Bitcoin is retired it's still doing quite well and it's sponsoring lots of workshops as we'll see now FC seemed to give people understandably a lot of hope it was very inspiring but it was not before long that a dark side to FC emerged unfortunately Howard who's had personal experience with these cases which I have not could speak to this but I can tell you a bit about what happened so for reasons that are still controversial and we can talk about why this might be I have some hunches but I'm not entirely sure why for reasons that are controversial there were beginning in the 1990s not long after FC was introduced there was a there were a number of cases at least five dozens in the 1990s but there were some of them continued as we'll see of sexual abuse allegations against parents that emerged by means of facilitated communication that is these were individuals who had no prior history as far as I can tell of sexual abuse but through FC and we'll give an example of this in a minute through FC these allegations emerged some of these parents served jail or even prison time and a number of them were separated from their families for months and these facilitated allegations of child sexual abuse sometimes physical abuse as well although interestingly there were almost all sexual abuse even though physical abuse is much more common in the general population that's an unusual thing right there which maybe should cause some suspicion but we can get to that what's notable is that very few of these allegations were ever corroborated it's very hard to prove negative of course so once someone is accused of child sexual abuse and it's very hard to remove from someone's reputation now I mentioned research so here's a case I think where psychological research I think has a reason to be quite proud I'm actually proud of my field here because it was yes in Italy too late but it was not long after these FC claims were being made by the way television Diane Sawyer ABC News had a big special on calling it a miracle and so on a lot of psychologists saw this of whom I knew and said this seems just too darn good to be true and as Carl Sagan famously said something seems to be true it probably is, not always but it should raise suspicions maybe he said this does not seem to make sense but let's take a look at it and there were two different types of studies that were performed on which shows a bit of both of them master passive studies are the simplest in master passive studies what you do is you present a stimulus, a word it's an object to the child assuming that the subject is the child of autism you present the object to the child show the child say this is a watch with a facilitator there and then have them look at that what is that type it out with the facilitator seeing that and what you see in almost all cases the word typed out will be watch well then do another trial where you have another simple object key but in this case the facilitator is out of the room or the facilitator is wearing a blindfold or something the facilitator can't see it key now type it if the facilitator is not seeing it that's the master passing task it's a very simple task if a child can type out pages of eloquent poetry certainly they should be able to say key with even though the facilitator doesn't see the word the question here of course is are those facilitating conditions in the mind of the child or are they in the mind of the facilitator that's what these tests all ask what I'm actually going to skip ahead and come back to this don't worry I'll come back because this is a little hard to see but this is a double blind test it's a bit more elegant but you can do this too in the double blind test what you do is the individual autism is seated in a cubicle next to the facilitator they are allowed hand to hand contact so the individual with autism has a keyboard facilitator can still facilitate but notice they're separated in these cubicles which allows the researchers to present them with different images in front of them so on some trials for example the images will be the same they might both be shown hamburger or something and then what you see is not surprisingly the kid will almost always type out hamburger or some comparable word like sandwich or something the bigger issue is what you do on these test trials so my apologies that this image should come out as well as I hope but on test trials here you have two somewhat different images so notice here if you can see it the individual autism is seeing a cat whereas the facilitator is seeing a dog the question now again it's a pretty simple test is which word is it going to be if the facilitations are coming from the mind of the child no brainer the word should be cat instead the facilitators each coming from the mind of the facilitator the word should be dog so to summarize a number of years of research that appeared in peer review journals the results in carefully controlled studies were I would argue uniformly negative so there was a review of this late 1990s by Gorman that track 19 well controlled studies found a total of 0 out of 183 successful validations of SC when the technique was studied under carefully controlled situations what does that mean what that means is these studies are quite clear evidence that facilitations are coming from the mind of the facilitator not from the child so let me see if I can get this to work so because Howard could not be here I figured I'd do the next best thing and show a little video with Howard on it the same video or is that no it's a different one did you click on that link yet oh sorry if you try it if it doesn't work I'll just copy it let me do this let me do this directly I think so yeah let me just take a minute to load since it's about a 5 minute clip this by the way is from a phenomenal video called the Prisoners of Silence anyone's ever seen that you can get that online it is a must watch actually it's rare that I make my students watch it but I have to tell my students you have to watch it's a it's about a 55 minute expose by the front line 1993 I think it was still just as relevant today as it ever was it's a wonderful although very disturbing video so I'm going to show a little clip of this which features Howard so he will actually be here virtually again so this clip can be a little bit disturbing just to warn you oh we still have a little add sorry about that folks this is the case of a young girl with autism named Betsy Wheaton Betsy Wheaton a 17 year old autistic girl began using FC at school in 1990 can people hear that one day using a letter board Betsy and her facilitator wrote that everybody in her family her father, mother, grandparents and brother were sexually abusing her can people hear that okay a little Betsy and her brother were immediately put in posture care while the case was investigated the court appointed a local attorney Phil Wharton as Betsy's legal guardian realized that this was more difficult than the usual abuse case before considering whether the allegations were true the court had to decide a more fundamental question was Betsy the author of the allegations or have they come from her facilitator I was most worried in my heart about were we going to do justice in this case if the communications were real and she was being abused the idea that on a legal technicality you might send the children back would be just absolutely horrible on the other hand if these were not real communications the idea that all of this would happen to these families and these children on a bogus idea was also unacceptable so my mind was extremely high on both sides and it was very important to reach a quality decision based on truth and so I was looking for what was an exchange symbol in a fairly quick way to just solve that one narrow question were these communications coming to the children all the parties agreed to invite an expert in communication to come to the Sus Betsy they chose Dr. Howard Shane from the Boston Children's Hospital oh yeah okay well Shane had devised a double blind test like this to objectively determine who was aftering the messages Betsy or the facilitators who transcribed the this is a simple version of the double blind test from the one I asked them what they saw with Betsy and her facilitator they saw a picture of a key the letters K and Y were typed to discover what happened if each saw a different picture when Betsy saw a cup she didn't type cup she typed hat what the facilitator saw here we go take a look at this one watch it tell me what she said okay when Betsy was shown a picture of a dog she didn't type dog but sneakers what the facilitator saw she didn't type boat but sandwich what the facilitator saw here's the next one it was just devastating to watch because what you saw was the words being typed out were the words the facilitator had seen and it was just it was just so clear someone was taking a while sitting there watching this and saying my god it's really true it's not this focus what I found was that whatever the pictures were different we always received a type message that was seen by the facilitator so that was pretty strong evidence that not only was Betsy not communicating but the messages were being totally directed and authored by the facilitator oh Betsy Ching then tried a message passing test this is the message passing here and showed her an object outside of her facilitator Betsy now I'm going to show you something look at this what is that give it back to me I want you to tell everybody what I showed it once I got it back into the room she was unable to type the word key I then took another key out of my pocket and said with the facilitator present what is this and she immediately typed key so again it suggests that when the facilitator is aware of the information we get the answer but when the facilitator is unaware of the information we don't get the answer the only logical conclusion of the test was that the terrible accusations had been authored not by Betsy but by her facilitator the Wheatons are now reunited the facilitator devastated by the test results stopped using facilitator communication and persuaded Betsy's school to stop using it as well the young still was persistent as a politician and now it takes out a darn thing at the following there we go at the end apologies for the music at the end you may have heard it's a little hard to hear before which I apologize but at the end you may have heard the narrator the facilitator devastated by the accusation stopped using FC so the facilitator is actually someone I know have corresponded with her name is Jess Boynton and she's a remarkably courageous person because she actually has written an article in which she has talked about quite eloquently how she was fooled by FC and her guilt over it and she actually is now a very vocal advocate against the procedure I think there are very few people who have that kind of electoral courage but Janice is that kind of person so what's going on here we've known that Ouija boards for some time when I was a kid I played the Ouija board and sometimes FC is called the Ouija board effect more technically psychologists call the ideomotor effect the ideas can influence our motions, our movements so that's what's called ideomotor what's in our head our ideas about what's going to happen next for example can influence our movements without our even realizing it some of these examples of this in psychology psychologists have known about this phenomenon for well over a century whether it's the Ouija board the Sheruille pendulum I've actually used this in class it's actually a very simple technique to use developable pendulum it's actually quite simple and quite astonishing you can start a little pendulum and you have the person hold it and you say even though it's not sure you say I think it's starting to move clockwise a little bit and I think it's starting to move counter clockwise sure enough it begins doing that even though the person doing it is usually saying I'm not having any control of this I'm not doing this so this person often has an experience of external agency it's really quite striking you're making me move this I'm not doing this in fact no it's coming from their head even though they're not aware of it and water dowsing is another example these are all examples of the ideomotor effect I experienced the ideomotor effect pretty often myself I believe folks have had this experience but I type a lot and about once a week or so I had this experience of typing something for a nation working on and I'll be thinking of something and suddenly a word that was not the word I had intended will pop up on the screen like maybe I'm hungry or something and I'll type the word food or something my hands somehow type that word it doesn't feel like my hands did that and I pulled my hand movements that's another example of the ideomotor effect something we're all prone to Norman Rockwell knew about this in 1920 when he showed the Ouija board effect of course because we're only a couple of blocks away from William James Hall of Harvard I had to put this up Gertrude Stein many people don't know the writer Gertrude Stein right around the turn of the century was a student of the great William James and actually published two papers on the ideomotor effect she was well aware of this so I think we're all being watched I think it's all part of social psychology studies so that is the story of the ideomotor effect now how did FC advocates respond to this? Janice Clinton was a rare case that admitted the negative results admitted that the technique didn't seem to work but by and large the variety of responses to these negative results by Dick Len and other FC advocates I'll give you a few of them the most common response was that these tests the ones you just saw some of these performing laboratories and so on were not valid because they placed the participants placed the children in a confrontational testing setting creating anxiety so the idea is well these are not really valid tests because these kids are too nervous they can't perform well the problem with that view is that many or most of these same kids had no problem performing in front of other people in fact some of them were actually presented at FC conferences in front of hundreds of people and they had no problem performing quite well in other cases also in these studies the ones that were done most of them had actually paired the individuals with their preferred facilitators gave them the reinforcers like the food goodies that they like if they didn't want to complete a trial they gave them a chance to do it over and over again and so on and again it also doesn't explain why somehow in the Betsy Wheaton case for example she would have no problem typing the word key when facilitators saw but not when facilitators saw what would be the difference in anxiety there it's clear again the other claim related claim is the FC testing environment is somehow unnatural again that doesn't seem to really explain most of these cases because many of these were performed and again in the individual living environment so many of these performed in the very institutions where these kids were living one claim is well there are a few positive findings that emerged in the literature in fact if you read the FC literature there are a few positive findings that pop up from time to time the problem is virtually everyone who has looked at this literature myself included would agree that all of these positive findings come from studies that are quite flawed so for example occasionally you get positive findings when the facilitators are aware of the stimulus materials before the study begins but of course that makes the results more or less meaningless because the whole idea is to keep the facilitator blind of those stimulus materials I would argue if there is one consistent finding in the FC literature it is that there is a virtually perfect some might argue perfect but I'll say I'll be charitable, virtually perfect negative correlation between the methodological rigor of studies and the likelihood of finding positive findings that's not a good sign for assignments sometimes that pops up in some domains pops up actually in the acupuncture domain you see that also in some other domains that's not a good sign where methodological rigor should increase the chances of getting good results it should not decrease the chances of getting good results but when you see in the FC literature as the study is becoming better and better controlled controlling more and more sources of error the likelihood of positive findings soon plummeted to just about zero I would argue essentially zero there was a fairly clever eye tracking study that was published this one has also been talked about showing that the individuals with autism often were looking at the right letters on the keyboard that is perhaps true actually I think the study itself had some methodological problems with it I'm not sure I believe those findings but even if they're true I don't think they're terribly compelling in reality because after all these are individuals who are working with facilitators for years upon years upon years typing out tens of thousands of words and sure enough if they see for example a letter T it's not surprising they're going to start looking at the letter H for example that's often the most common letter to follow T so that itself isn't terribly compelling they're a little more likely to actually look at the next right letter because after all they've seen those letters being paired thousands and thousands of times one of the most common criticisms you'll hear is that well maybe FC doesn't always work but in fact there are a number of reported cases where people have graduated sometimes the term is used no one FC to independent typing and there are people who were taught FC who later typed on their own yet the problem with that is that there's no evidence whatsoever they needed FC in the first place some of these individuals may have been able to type independently on their own there's no evidence whatsoever FC may have placed a role in getting them more comfortable using a keyboard that's quite possible and that may be that may be a good thing but there's no evidence that you needed FC to be able to type independently to begin with soon after these studies came out my professional consensus was to put it mildly overwhelming my organization, one of my organizations the APA adopted in council in August 1994 therefore be it resolved in APA adopts the position that facilitated communication as a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy I worry a bit by the way about the word controversial I think sometimes that pops up I think that's a dangerous word sometimes because I think to the general public there's like half and half evidence and so on if a global warming skeptics have used that word the evidence is controversial because one or two percent of scientists don't agree with it I don't see it as controversial anymore I don't think scientific evidence is at all controversial I think it's pretty much now been settled now I'm going to go through this part of the talk more quickly but one point I want to make I'll probably fly through the slides fairly quickly but I have found among my professional colleagues many of them are aware of the debunking of FC by scientific research but many of them seem to think that it is now more or less defunct extinct, I did in fact until about seven or eight years ago so here's some quotes from the published literature a cautionary tale for researchers is the rise and fall of FC although the technique is nowadays rarely used I think that's often a view that's actually out there and quite popular we've recently shown in a paper rather lengthy paper that that does not seem to be the case so we've compiled some data from a number of surveys have looked at use of various autism interventions Gina Green and colleagues found that 9.8% of parents of children with autism report that kids are using FC Shrek and Reser 2008 I find this number astonishing 6.4% of board certified applied behavior analysts that is the best supported treatment for autism say they use FC 5% believe it's supported by Reser now that doesn't sound like a high number but even the fact that any of them believe that FC has decided to support it is I think worrisome another recent survey 6.4% of parents caregivers say their kid is using it so it's still out there now these may not seem like high percentages probably between 6 and 10% but in fact once you do the math you multiply the numbers thousands, maybe even tens of thousands of kids who are still using and making use of this technique despite the evidence here's some online searches we did looking at Google, Google Scholar and you can see the number of Google references to FC has been going way up especially since about 2000 and 2000, 2005 Google Scholar interestingly less mark the slope there is less mark although even there you're seeing people as we'll see in academic publications doing it we did if you're curious to use applied behavior analysis which is the best supported technique for autism as a control not shown here those were more or less flat so there's something distinctive about FC busy slide here but the point here if we can go through this is that even in the scholarly world you're seeing FC making what appears to be something of a comeback it's reappearing by the way the number of guys is and one has to be careful because there are different variations so it's not often called FC my hypothesis for that is FC has acquired a negative connotation so in that little video you saw they said supported typing that's often the term is used assisted typing there's a new technique which I see is the minor variation called rapid prompting prompting more or less the facilitator rather than holding the kids hand or arm is actually just holding up the keyboard and moving it around and the idea motor effect is slightly different guys Syracuse's ICI that organization I talked about is two done inclusion is still thriving it's giving a lot of educational grants remarkably I complained about this and Doug Bicklin was too happy with us but in 2005 Doug Bicklin was appointed by Nancy Cantor who is a famous psychologist who actually has a child with autism was appointed dean of education at Syracuse University despite all of this which I find troubling Cantor in a strange coincidence is now chancellor at Rutgers University Newark I say a strange coincidence because I'll get to that in a minute there are a bunch of other cases MIT is hosted a conference on FC right down the street Indiana University all excellent institutions have hosted major conferences on FC and we're also seeing a number of individuals of autism who are enrolled at major colleges and universities Penn State, Oberlin and others who are attending classes with the help of their facilitators and doing well in these classes FC's also made a resurgence in print online there have been a number of popular books at least 10 maybe even more touting the benefits of FC that have appeared since the mid 1990s one scholarly book I ended the book 2012 featured a chapter describing two adults with autism who portally fell in love using FC there have been descriptions of facilitated dating no I'm not making that up people who have gone on dates with their facilitator and they're actually an article supportive FC that appeared in major peer-reviewed journals some of them really decent peer-reviewed journals like brain and language one striking example of an article that appeared in a journal is this one by a woman named Anna Stubblefield some of you may know that name if you don't I'll explain the name shortly Anna Stubblefield professor of philosophy at Rutgers University of Newark wrote an article called Sounded Fury when opposition to facilitated communication functions as hate speech published in 2011 which was a very spirited defense of FC and a very harsh attack on the critics of FC like Howard Shane and others at one point in the article she actually likened critics of FC to pornographers and gave an analogy the image of someone bringing a cross on an African-Americans long basically arguing that that's what criticism of FC is like so the Anna Stubblefield story is in my universe sad and tragic one so people may have read about it so Anna Stubblefield shown here has been sentenced to prison for 12 years and if you don't know the story you can read about it in the New York Times which had a full article on her so Stubblefield who although she was a professor of philosophy her mother actually was a big opponent of FC she became a big opponent for a while as well and she convinced the parents of a young man, DJ who had cerebral palsy and severe intellectual deficiency, DJ's IQ was estimated in the 30s I believe it was and was believed to be completely incompetent she began to facilitate with DJ to help these individuals and from her report began to fall in love with him over a time through FC almost certainly that those facilitations were coming from her mind not his so she claims that he reciprocated their love and said I love you frequently and so on and she was convicted because they had sexual intercourse and she was convicted for an abusive aggravated sexual assault because it's quite obvious that DJ had no consent no ability to consent to sex it's sad because I suspect Doublefield honestly believed that he was consenting even though he was not and I think to me that's a powerful case where epistemic duties and a failure to honor one's epistemic duties result in terribly tragic consequence just a terribly sad and tragic story all around there's also been several movies touting FC some of you may have seen autism as a world on CNN, CNN in 2005-2006 replayed this movie many many times Regis Jackers was later 2010 so autism is a world which I came out in 2004 co-produced by CNN tells the story of Sue Rubin who's now in her late 30s a young woman who has been diagnosed with autism that diagnosis has been challenged by some people who was again written off as severely disabled but with the help of FC was able to go to college and actually give speeches using FC was nominated in 2005 for Academy Award for Best Short Documentary Regis Danvers Doug Bicklin had a role in this film tells the story of two adults who used FC and graduated on to independent typing again no evidence that I have ever seen that these individuals could not have done some independent typing on their own we've also seen to some degree the numbers are really hard to come by Howard could comment on this because he's been involved in some of these cases but we've certainly seen in some cases the return of sexual abuse allegations so I don't know if anyone saw this on TV a couple of years ago but I believe it was Dateline with Chris Cuomo I think it was Dateline had a a whole story on this in 2007 the Wendros Wendro was a man who came over from South Africa married an American wife settled in a quite nice very almost idyllic life in a suburban area outside of Detroit Bloomfield Detroit I think it was and they had a daughter Aislin who was diagnosed with autism and interestingly the Wendros sort of a tragic turn Wendros wanted Aislin to be able to speak she was severely sexually disabled they had learned about FC that read about it and they thought it was legit so they actually pressured their school ironically into giving her FC and things seemed to be going fairly well initially she seemed now suddenly to be able to communicate which seemed stunning to them they were amazed because they assumed she was severely sexually disabled with a very low IQ then suddenly Julian Wendro was accused of child sexual abuse received a phone call and was actually put in prison on the basis of these FC generations his wife was also I think she was put I think she had to wear an ankle bracelet for some time they removed Aislin and her brother Ian from the home for some time so he was actually put in prison for 70 of them in solitary confinement during the trial a very simple message passing was tried with Aislin the message passing task failed disastrously Aislin was not able to answer a single response correctly even in response to a very simple message passing the Wendros were reunited so I suppose there's something to happy end to this story and the allegations against him have been been dropped but again not before he went through and his family went through a living hell as a reputation of being terribly tarnished I also think in addition to child sexual abuse there have been and still are some potential indirect harms of FC I think we often forget about opportunity costs and Howard I stole his Howard slides because he was going to talk about this a bit what I worry about with FC is forgoing potentially effective interventions I mentioned applied behavior analysis which I can talk about there also a host of augmentative and alternative methods AAC which I think are often confused with FC that may partly be part of the problem AAC that is actually worth just fine but they don't involve any kind of facilitation AAC that's not a colleague Mark to read it in some of this work what you see with kids with severe intellectual disabilities is they often get very frustrated sometimes become aggressive because they simply can't ask what they want so if they're thirsty imagine how frustrating it would be if you're thirsty you can't get a drink of water you can get very upset so it simply teaches them to it'll show like a little cup of water teach them to press a button when they want water press a button when they want food or play with a ball or things like that and those kind of things are very simple there's no facilitation of all but kids with severe autism can typically learn to do that after some time and that does seem to help quite a bit as a cure for the disorder of course not but it does help with some of their adjunctive behavioral problems especially frustration aggression and others I also think this technique can raise and in turn dash parents hopes needlessly I think that is a terrible you know how indirect harm I also think I worry about this I worry about a potential slippery slope involving methodological rigor I worry that once we begin lowering the methodological bar for what counts as a good studies I think we've seen in the FC literature that we may start doing the same thing for a number of other supported techniques and more deeply I would argue part of the first person to argue this but more deeply I worry that this may reflect a deep seed failure to accept children for who they are so a lot of the advocates of FC have argued we're giving a voice to these kids but the question I have is whose voice is really the kids voice or is it ours are we wanting these kids to be who they really are or are as that front line video asks pointedly at the end of that video are we seeing these kids as we want them to be and again I won't go into detail about this this is from Howard's talk you're seeing a very vocal in some cases polemical attempt to try to make sure that school districts other places provide FC to kids and I'm not sure that is a wise idea given the state of the research literature so let me end it about 5 minutes and ask a couple of broader questions pull back a little bit from this and see if we can abstract some broader lessons so one question is why is autism such a fad magnet is there something specific about this condition and I don't know the answer to that but I would say it is again really hard to keep track of all the unsupported treatments for autism there's one estimate in 2008 of 50 unsupported treatments for autism I think that number is probably close to 500 but the point is it has really become a disorder for which people are seemingly willing to try almost anything so I think there are a couple of potential reasons one has been a massive increase in the prevalence of autism in the US the reasons for that increase are unclear so I work at Emory right across from CDC which is right across the street the numbers there are now 176 or something when I went to grad school in clinical psychology we learned numbers like 1 in 10,000 or things like that so what is responsible for that massive increase in autism is not clear I think we can be pretty darn sure it's not vaccines I happen to think it is mostly if not entirely a change in A, diagnostic criteria becoming more lax and B greater incentives on the part of school districts to report autism whether or not there is a genuine increase in prevalence we don't know what doubt there is but even if there is I think what we see here is because there has been this massive prevalence people are getting more desperate and people are also seeking better answers and people are sure maybe there is some answer for this and we better find out what that answer is and we better find a treatment urgently so understandably there is a lot of urgency out there to find treatments I don't think we can all be fooled because autism is the condition although it is a very chronic condition what we know about it is that the signs and symptoms often wax and wane over a very short time interval some of the things like aggression frustration and mood and so on often go up and down so if you do almost anything almost any intervention I think what you are likely to see particularly if confirmation bias kicks in you may be able to see some improvement after almost any intervention if you are willing to look for it and that can fool us the internet has also played a big role of F.C. and other unsupported interventions so once surveyed 2005 and that is 2005 so I think this number is probably going way up found that 86% of kids it is probably 100% now of parents of kids with autism had consulted the web for information on effective treatments why is that worrisome? there have been some content analyses of autism websites that show a number of them are replete with misinformation about F.C. and other interventions are merely looking on the web for information on autism they are going to get a lot of information but they are also going to get a lot of misinformation why F.C. in particular? I think there are a couple of reasons I think first F.C. is popular perhaps understandably because it implies that what we see in the condition are not deficits but differences so as you may know there is a burgeoning neurodiversity movement out there in the autism field that implies that autism and other conditions are merely an example of diversity, not that these kids are less intelligent it is not that they are election disabled it is just a different way of seeing the world and that view is very appealing understandably and I think that probably fuels the popularity of F.C. we also know about autistic savants I think that probably plays a role too in making F.C. seem plausible we know that there are individuals with F.C. with autism maybe 10% or so who have remarkable savant like skills and maybe people assume well if some kids with autism have these remarkable skills maybe all kids with autism have these unharness skills, this remarkable unrealized potential so I once worked with a individual autism actor who was an adult who was a calendar calculator and was actually fairly famous at the time that is what he would do he was a calendar calculator so when he first met me he would go I remember he was very impersonal very friendly he would say, Scott nice to meet you and the first thing he would ask you is, Scott nice to meet you what day were you born and I said, December 23rd 1960 he said, do you know that you were born on a Friday? No I don't think I ever knew that I'm not sure if I was born on a Friday he was like 99.9% I can tell how he did it if you're curious but there's a little technique that he used but it was remarkable it was blown away by this and for fun I would ask him other questions too he would say, do you know when February 17th 2007 that would take him a little longer that's going to be a Tuesday and I looked him up and he was used right almost all the time so again when you see that ability well maybe other people autism F.C. could help to bring out F.C. I think also gives hope when there was no hope there so Howard has actually coined this term the savior effect I think a lot of individuals who are facilitators who work with people autism understand we feel this desire I think I would too to want to save these individuals want to save their families give them some hope back but as we've all known the road to how to pay with good attentions we others have written about the unrealized potential I think it's a very powerful myth out there in popular culture they did it lying not just individual autism but within all of us is this remarkable reservoir of unharnessed potentials which I think has given rise to a host of little mythlets out there so the 10% of the brain myth which in one survey 71% of Americans believe that we all use only use 10% of our brains we have this huge other 90% of our I'd love to believe that too we have a brain potential that we have not maybe that's true of autism as well and then finally I think there's this allure of naive realism as it might be called naive realism is an idea imported from philosophy this belief that we can always trust the raw data of our sensory impressions and after all that is exactly I think what facilitators are seeing they are naive realism as they'll say I can see this work I don't need these controlled studies these controlled studies are interesting but they're really fundamentally a waste of time because I'm there I'm seeing it work with my own eyes but we have learned throughout the history of psychology psychiatrary neurology that naive realism is perhaps the single most dangerous tendency we have to teach our trainees to avoid so there are lots of phrases out there in the English language the test of seeing is believing believe it when I see it and so with my own eyes in reality psychological search has taught us if you read the work on top-down perception and so on that anything it's closer to the truth to say believing is seen so once we have a belief in mind we often see what we want to believe as the literature on confirmation lies gee this is Mark's brothers used to say we can believe me or my own eyes that's kind of naive realism here's another example from a less funny example from the history of psychology that many of you may know this is from a wonderful book by Robin Dawes published in 1994 it's not a quote from Dawes, he's quoting a prominent practitioner of a treatment in the 1940s a very prominent practitioner for a severe psychological disorder primarily schizophrenia, what we probably now call bipolar disorder this is what this practitioner said I'm a sensitive observer and my conclusion the vast majority of my patients get better as opposed to worse after my treatment and as you might know if you don't the intervention is a prefrontal lobotomy the personal under that statement is shown in that that's Walter Freeman the American neurosurgeon who himself did about 5,000 lobotomies was Freeman sadistic? probably not, he was falling apart in my realism he seemed to use his own eyes that seemed to work from what he could tell but in fact he was either seeing improvement when it wasn't there or misinterpreting certain things as improvement and by the way it was not just Freeman who was full as we know I guess Moniz the Portuguese neurosurgeon who was the primary person for really bringing prefrontal lobotomy into humans got the Nobel Prize in 1949 for his work on prefrontal lobotomy as it was then called severing the white matter fibers in the brain and in psychiatry we have of course seen and I think modern clinical psychology, psychiatry students don't know enough about this we've seen a parade of interventions that people thought well meaning smart people just as smart as we are today we're sure it worked but I think because they were trusting their naive realism whether it's the spinning chair the tranquilizing chair shown there on the right that was developed by Benjamin Rushen psychiatry the Utica crib on the bottom these were all techniques that we quite rightly now regard as grossly inhumane yet a lot of people smart people over the centuries thought these techniques were effective again because they were relying on their naive realism so finally I'm running late on last two slots and I'm going to leave at least 20 minutes for questions so implications for psychological, psychiatric, science I think I made this point already but I want to repeat it I think we should not assume those of us especially in academic settings that fads that have been dispelled debunked by research aren't necessarily gone or will disappear from widespread use because again most people don't know what we do most people don't care about what we do in academia and a lot of practitioners out there especially in my field of mental health are out there practicing things that are not based on the research evidence and in fact some of them not most of them but some of them are actively antagonistic to research evidence and don't care about it and I think more broadly I think it illustrates the dangers of academic complacency I think and understand this we're all really busy running around trying to publish papers to get rants and I think we sometimes feel I have to confess I think I did once too that taking on these kinds of claims is somehow beneath us and not part of our job I'm not sure that's such a good conclusion and again I think as I argue I think we might think that once we've discredited debunked a technique that doesn't work our job is pretty much done but I would argue in many cases that may just be the beginning our real work may have just begun because now we actually have to disseminate that knowledge and then finally because this is a bioethic seminar let me just say a bit about the implications for ethics again I think I would argue all practitioners and not just people with PhDs or MVs even people who learn facilitated communication in a weekend workshop which is by the way when a lot of them learn it have to be aware of their epistemic duties which I think include a knowledge of evidence based interventions a very basic rudimentary knowledge of research design like what a control group is why we need control groups in science and also I think an awareness of one biases of why naive realism can be dangerous to reliant to heavily why clinical observation although a remarkably helpful tool for generating hypotheses can be quite dangerous for drawing inferences so I think we have to realize what clinical observation is useful for when it comes to generating hypotheses in science is wonderful but when it comes to drawing conclusions about what treatments work it can often be quite misleading and I think finally we cannot assume as I think my field of psychology has long done that psychological interventions are at worst innocuous I think many people felt and Howard even has talked about this too when Howard first saw a talk I don't think he might mind telling you this because I think he was going to say this in his talk when he first saw a talk on FC his reaction is this is crazy stuff this can't be right but try it what's the harm? I think that's actually what he said what's the harm in this and I think that was a lot of people's reactions myself included well I think we now know that many of these techniques in fact can be harmful in a lot of ways and I've written a bit on this in terms of some of the literature showing that at least some psychotherapies may actually be directly harmful others may be indirectly harmful so we can't assume that doing something is always better than doing nothing and I'll quote from one of my heroes who I actually got to meet a few years before he passed away the astronomer Carl say again he said that every scientist should have a little voice in his or her head saying but I couldn't be wrong and I think if we need to get one point across to our students and next generation students is you also have to act scientifically even if you're not working in a lab or doing research you still should be a scientist in the way you practice the way you think about clinical practice meaning you need to be humble in your inferences and recognize that you also can't be wrong thanks so much time to take up but I took way more time than I intended so we're happy to take questions I think the audience will agree that it's a fascinating story and I'd like to just ask a practical question about the technique what did practitioners say that they're doing when they're facilitating communication? if I were learning this I would be wondering am I supposed to be feeling feedback from the subjects hand and allowing that to guide me to guide their hand to the keyboard if that were true I wouldn't need to see the keyboard and so I wonder if they have a story that they tell themselves about what it is on a very nitty-gritty level when they're doing this so my understanding of this and in both re-literature and also having one published interchange with some of these folks over this some of them jumped on me once because I said that facilitators are guiding and they said no we don't do that I still think they are but point taken I criticism taken because I think their point was that's not what we think we're doing they claim that they're merely offering resistance and steadying the hand the idea is these are individuals you don't know how to or not able to type to the right letters so all they're doing is they're offering a little bit of resistance steadying the hand and that's it so in principle that is correct they should not need to look at the keyboard and you could replace it with a device that just steadied that is correct and many people argue the same thing so we'll take rapid typing for example why do you need someone to move the keyboard what do you need someone to hold the keyboard why not just put it on a fixed platform and that should do it so I think it's a great question because that rationale itself raises some very troubling questions but that is the claim it's merely steady merely but they claim that there's no actual guidance whatsoever of course I would argue the research literature shows otherwise I wonder what we know about the most of the people that are children their ability to spell it seems that I don't know a lot about their intellectual capacities of the other education they're receiving but if they don't know how to spell sandwich then it would seem further evidence it seems like there's a lot of assumptions about what they can do well and what you see is that many of the words were being used especially in the early 90s when F.C. was coming out many of the words were being used were well beyond these kids years the question was so many of these parents expressed surprise too because these were kids again bear in mind this was before the internet when F.C. emerged these parents were not showing these kids books these kids had open books yet they were often spelling words there's simply no way they would have ever encountered and they're often spelling well they're often occasional spelling errors in there that may have been introduced by in-person facilitation but many of the words being introduced and sentences and concepts were ones that were simply implausible it's very hard to believe these kids would have ever encountered them and again some of these things should have given people pause so in one case for example bear in mind this was actually presented without a hint of irony in one case a child actually claimed or the claim being made was that a child had asked for a change in his medication status based on an article he had read in the New England Journal of Medicine and that was the facilitation I read an article in NEJM that claimed that blah blah I should be on this medication and this is actually presented by F.C. had the kids evidence this was happening again going back to Carl Sagan extraordinary claims require extraordinary evidence and these are pretty extraordinary claims the evidence ain't particularly extraordinary in these cases I want to say this is always the case and again I think in some cases a lot of myths I wrote a whole book on myths and one of the key things these lovely myths probably stem from a kernel of truth is it true that many individuals with autism probably have more intellectual talents than we realize yes and I remember when I was young occasionally we would find a child who had was actually more able to communicate that we had thought that we'd often underestimate that kid's intelligence I don't doubt that although again in those cases I don't think you need F.C. to bring those guilt out yeah so you had two interesting slides that were separated in time one excerpted some items from the APA ethics standards put in a mandate to use the most best available science and another one later was a statement they don't mention science APA but that's the implication okay well the the other one was apparently official statement from the APA basically saying that F.C. was not scientific those two items together it seems like form a pretty official case for actionable discipline against any APA member just as F.C. is that I would agree yes I don't think I would bet that the number of actual members of APA who use F.C. is probably staggeringly low I don't know if any do, there may be a few who have in general most facilitators are people who have learned these things on weekends perhaps educators people who work in schools and so on it'd be very rare for a PhD or a psychology psychologist to use F.C. I'm not saying it's never happened I suspect it probably has but by the same token I'd also argue even if it has happened I think you raise a good point APA has been very reluctant to take a stand something so even look at their statement which I think is much better than what they've typically done but even their statement is a little bit wiggler so you say that practitioners are basically mostly paraplegic professionals that's correct and in the Wendrow case for example forgetting what her training was but she was an educator she was like a school teacher that's much more typical but again I would argue that APA has been very reluctant in general to take stances on these kinds of issues I would argue that some of the controversial signs of it I would argue the same thing probably also for people who use repeated suggestive techniques to bring out memories of abuse again I think sometimes people confuse that with the question of whether recovered memories can be real I think that I remain open to that possibility one can on the one hand say yes certain of recovered memories might be real possibly I'm not sure but I'm open to it but that does not necessarily think should be sign of the controversial yet APA has not done anything against practitioners who have used for example aggressive hypnosis techniques or things like that to bring out these memories although I think they should have Hi I'm a clinical psychologist probably trained in the same her as you did in a different way my very first course was actually ethics every Monday and they head of our department to write the APA ethics so it was over bagels but one of the things from even back in the early 80s was and clearly anyone who did an APA endorsed program PhD program also then had to do an APA approved internship and then fellowship or multiple fellowships one of the most important things that was drilled into everyone and I realize this is different than the facilitator per say but there are boundaries so I would argue that even if a psychologist did this for facilitation it's going beyond any professional boundary so the woman the facilitator who is now in jail for abusing a child I would say regardless of what the profession was they did something unethical like getting facilitation or not I mean that was a mirror and that that woman unfortunately had a lot of psychiatric problems but I think that that's something that when we look at facilitation and I fully agree with you there's no doubt to say it works and the same thing with some cases of child abuse with the suggestion sometimes whoever is in that professional role may not be very stable themselves I totally agree with you and I think the stubblefield case obviously it used FC as a vehicle but obviously it would have been unethical even without FC absolutely so I fully agree I want to make a comment so you mentioned why autism and I just want I'm a child psychiatrist so I wanted to say that I think part of it is probably two other things one is kids and patients with autism they probably have a hard time communicating like how they feel and also in general so they have a hard time advocating for things that don't necessarily work for them absolutely and another thing which I think is more important is that autism is essentially a collection of symptoms of the disease itself in other words it is very possible that there are different causes leading to this collection of symptoms and the molecular genetic data and so what I wanted to say is that I want to I don't feel we should necessarily because essentially where we do research measures where something works for like a population rather than individuals so as we know, patients with autism they are not like the same they are probably really diverse so some things that don't work for like a population does not mean that they are not going to work for individuals so I guess I want to say like we probably should be cautiously when some things do not work for global patients I think it is possible why those people feel that they see things work maybe for two individuals but not for the rest of 98 people point taken, I would say two things response to that number one I don't entirely disagree with what you are saying but that's okay I certainly agree that it's hard to prove a negative in science so to say that something can't ever work under any circumstances is different from saying there is no evidence that it works and what I would say with FC's there is no evidence it works I try I try fail every day but I try as a scientist in my lab to model this for my students and I always try to say I will try although I don't advise anybody else I will try to be open minded so even though I have seen no evidence whatsoever that FC works if someone were to provide me with overwhelming evidence it would really have to blow me away because for me my basing in prior it's likely that working is very very low but if it really blew me away it was a well replicated what I do would take a look at it short but two points number one is although FC is historically linked with autism because of the efforts of big big one there is nothing intrinsically linking it to autism so it really can be used and has been used for almost any individual who is not verbal so the issue here I agree autism is probably very heterogeneous molecular genetic data I think probably point in that direction but again the issue is not so much to me whether can FC work for certain individuals with autism as opposed to can FC work at all really for individuals who are not verbal to me that's the question so I'm not saying the evidence that can but again I'm always willing to be persuaded if there's goodness evidence second thing I would say is my own take on this is anytime one makes a statement about a treatment I think one has to remember the basic burden of proof requirement so that's the thing I think we could all agree on that ultimately the burden of proof falls on those people who are making claims of efficacy does not fall on skeptics or critics so ultimately if someone makes a claim that treatment works the onus of proof falls on them to show that it does work at this point I would argue they have not met that onus of proof requirement and just to clarify I was thinking more about like other treatment like things that we don't have enough evidence yet like op therapy music therapy oh sure it's not a necessary FC I actually don't know FC very well and what I would say there I agree I think one has to make a distinction between invalidated interventions and unvalidated interventions there's one that's different by one letter but there's a fundamental difference between something I would argue FC is pretty darn close to being invalidated but shown in my view should show not to work but there are a host of interventions that are unvalidated we should keep it open mind to things that are kind of novel and sufficiently tested and so on I think we should keep it open mind to those interventions but by the same token we also should be good skeptics and ask for the proponents those treatments to meet the burden of proof that isn't something why I'm not a big fan I'm not alone in this Marsha Angel wrote a very good editorial on this sometime ago I'm not a big fan of the concept of alternative medicine I have no problem with certain alternative medicines but alternative medicine to my mind I think some of this gets mixed up with the FC stuff too is flawed in my view I don't think there should be a third type of medicine to me there should be scientific medicine and unscientific medicine if something is untested or something is not going to stop but if something is not yet tested and it's we don't know whether it works let them get online let them wait and if they can provide us with persuasive evidence then as scientists we should keep an open mind to that and if they clearly show that it works then it should be admitted into science and sometimes science can be a little conservative in terms of changing and we all realize that but by the same token eventually if the treatment's been shown to work it will be incorporated into the corpus of scientific evidence and I think we've seen that in my field there are plenty of treatments I think people doubted whether or not they worked but I think they could only have me talk about decyclocerin which is basically seems to speed up treatment for anxiety when I first heard about this that's not going to work it plays a role in the system and seems to involve learning and sure enough I have my doubts but there were a number of controlled trials that said when you give people decyclocerin when they're getting exposure therapy they get better faster it works so now people have accepted that but that's because they did the hard work they did their homework and they showed control studies that it was effective so I'd like to thank Dr. Leigh for all the time if you'd like to continue the conversation and have some food, the food is in the back if you're staying