Autism and belief: Part I
Back in 2009 I wrote a post called “Wanting to believe in miracles.” It was about the case of Rom Houben, a severely brain-damaged patient in Belgium who was said to be communicating complex thoughts through a method known as facilitated communication, in which a brain-damaged or autistic patient (often a child or teenager, in the case of autism) is helped to “write” through a facilitator guiding his/her hand to spell on a computer or letter board.
Houben’s was a wonderful story, and many people were deeply touched and inspired by it. But I was extremely skeptical, having seen an excellent documentary on Frontline called “Prisoners of Silence” that debunked the vast majority of cases of facilitated communication which, like Houben’s, use another person to guide the subject’s hand. And so I wrote:
What’s really going on with Rom Houben? Evidence indicates that he does have more ability to communicate and think than originally believed: for example, he can tap his foot yes and no in answer to some simple questions, and his brain scans indicate some sort of activity. So he has probably retained the ability to communicate in a basic way, but the articulate sentences he supposedly generates through the facilitated computer are extremely suspect, and are probably generated by the hopeful mind of the facilitator, whether she knows it or not. This could be tested rather easily, by asking him a question to which he would be expected to know the answer but about which the facilitator would be expected to know nothing.
Read the whole post if you want a more thorough background about the who, what, and why, of the case, and also a rather extensive debate from commenters as to whether I was being too skeptical or not.
But somehow I missed the announcement, just a few months later, that the chief doctor on Houben’s case—the person who had attested to his remarkable abilities and was convinced they were real—had announced that he’d been mistaken:
Houben’s neurologist, Dr. Steven Laureys, says a scientific test has shown that his patient cannot answer even simple questions…
Since [making his initial reports], he has tested Houben and some other patients more rigorously.
A few days ago, Laureys and his research team presented the results of those tests at a scientific meeting in the United Kingdom.
Laureys says they showed the patients an object, or spoke a word. Unlike earlier interactions with Laureys, the facilitator was out of the room for that part of the test. Afterward, the facilitator was brought back in to help the patient answer questions.
“We presented three cases after traumatic brain injury. Two failed the test. And that was including Rom,” says Laureys.
In the test, the man who was supposed to be writing a novel failed to identify an apple through facilitated communication.
It’s sad. Sad that so many people can be fooled—including scientists, despite the fact that it’s been known for many years that facilitated communication has only a tiny percentage of true successes. As I wrote in my earlier posts, I think the majority of believers are sincere and not con artists, although I suppose that some are knowing dissemblers. Some of the honest believers are parents and educators who want desperately to believe that their children or patients really have a great deal more promise and abilities than they seem to possess, and that some wonderful day the wall between them can be broken down and the parents/workers will have finally have access to their thoughts. Then the fruits of the parents’ and teachers’ hard and loving labors will finally be harvested.
But most of the time it is not to be.
In the case of Houben’s doctors, it is curious that they originally claimed to have performed the proper tests:
Initially, Dr. Laureys said that he had verified that the facilitated communication was genuine, by showing Houben objects when the facilitator was not present in the room, and later asking Houben to recall those objects.
But after a few tests, when Dr. Laurey’s wanted to perform more rigorously-controlled experiments, the facilitator balked. Interesting, no? And then:
Using a different facilitator, subsequent testing under properly controlled conditions in which fifteen objects which were shown to Houben over a period of weeks was performed, Houben was unable to communicate knowledge of any of the objects which had been shown to him during the facilitator’s absence.
I have little doubt that there are people who still believe in Houben’s amazing abilities, but his doctors and others who work with him are no longer among them.
I’m writing this not just to say “I told you so”, although I do feel that my position has been vindicated. I am writing it because I continue to be astounded at how many people fail to exercise even a moderate degree of skepticism when a story is one they really want to believe.
If you watch the video from Frontline that I linked to above (there is also a transcript of it here), you will see that not only is belief in this sort of thing a sad example of hopeful self-delusion, but it can actually lead to helpers making false accusations of child abuse through their “facilitation” of the thoughts of autistic children.
What brought this all to the fore—and led me to read the update on Houben for the first time—was when a member of my book group suggested we might read The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism, by Naoki Higashida (English translation; the text was originally published in Japanese in 2006) for our next meeting. The book was published in late August of 2013 and has received a lot of press since, including a bunch of glowing reviews and a huge endorsement by Jon Stewart of The Daily Show that propelled the book to a number-nine spot on the Times best seller list.
The minute my book group friend mentioned the subject matter of the book, my alarms went off. I asked her whether she knew how the book had been written—had the boy used facilitated communication?
[To be continued in Part II…]
“I continue to be astounded at how many people fail to exercise even a moderate degree of skepticism when a story is one they really want to believe.”
In general, people (which would include all of us, to one degree or another) believe what they want to believe and all information is processed through the subconscious filters of our basic beliefs. Which is why logic and reason are so important, they act as an internal feedback mechanism and objective reference for comparison.
“Man is not a rational animal, he is a rationalizing animal.” R.A. Heinlein
Neo and Geoffrey Britain,
This brings to mind a tangential, but related thought. I have long spoken to friends and family about my belief in the “Disneyfication” of the world around us. That is people are anti-hunting and pro-animal (e.g., PETA) because they somehow semi-consciously believe that Bambi, Thumper and Flower actually do cohabit peacefully in nature and frolic together in the meadow (remember the British animal rights spokesman who claimed “Animals are people, too”).
Carry that idea one step further. We succumb to the pseudo-reality of Hollywood; a “reality” where on film and TV most of the time things turn out alright (I notice that there have been prosecutors now complaining about juries being tainted by Hollywood’s fictitious ability of CSI teams to always unravel the circumstantial evidence because in drama, the true perpetrator is almost always identified).
Are we not being affected by this fiction that “everything turns out alright”? Doesn’t that have a bearing on Neo’s observation that we believe what we want to believe? Are we not conditioned to believe that things always turn out alright?
This goes back to a previous thread and commenter Blert’s note of memetic warefare (9/23, Political change: Head, Heart) Blert’s comment 9/25 @4:20 pm excerpted here):
Blert was discussing the inability to recognize the Islamic motivation behind current terrorism. I also recommend the article linked below which clarifies Nazism’s similarity to Communism but notes that one is universally reviled while the other is tolerated and praised. Daniel Hannan tellingly notes that while it’s okay to wear a Che T-shirt, no one would be caught dead wearing a Hitler T-shirt.
We believe what we want to believe; the memes abide.
The link (very highly recommended):
http://blogs.telegraph.co.uk/news/danielhannan/100286702/the-greatest-cultural-victory-of-the-left-was-to-disregard-the-nazi-soviet-pact/
Even very intelligent people can be fooled. See the article on N-rays.
http://en.wikipedia.org/wiki/N_ray
N-Rays — A fascinating account.
So, if we believe what we want to believe, then the prompted question is: How much of our historical and scientific knowledge is really someone’s constructed meme?
The is scarily staring to enter the realm of “truthiness.”
no comment..
its hard enough without that bs
its hard enough with all the punishments for existing
on another point, islamic convert in oklahoma beheads woman and stabs another before being shot by employee with a gun… sista says, he is ok, and gives shout out to warriors…
we now return to the blog post and discussion in progress
One of medicine’s great contributions to 20th Century science is the double blind test. The statisticians decide before the trial of a medicine begins what determines a positive outcome. The patients are randomly assigned placbo or drug without the doctors’ knowledge. Only once the trial is over and the statisticians have analyzed the results do the doctors and patients learn who got the drug under test and who got the palcebo.
Had the doctors in this case followed a similar procedure they would have found out right away there was no faciltated learning.
At the time there seems to have been many people who believed the same about Helen Keller and Ann Sullivan, that Keller was merely Sulivan’s ventriolquist’s dummy.
It is clear that there are a great many scientists — that is, people who function successfully in the world of science — who don’t have a clue what science is. Skepticism (including appropriate blindness), transparency about data and methods, the ability to make correct predictions; these are some things that are central to science.
And the poorer their understanding of science, the more strongly they condemn any scientist who disagrees with them.
Son of a B..
the person who runs the super computer that i am trying to transfer to just came by… problem is that i am over 40, and so, persona non grata and they only want women and young men or tanned people… so despite expert level certified, 30 years experience, bronx science, drive to be there, i am never to have a raise or promotion or xfer for the rest of my life…
please someone kill me as my life is over anyway
living like this is torture…
i am never to have a raise or promotion or xfer for the rest of my life…
So long as you refuse to change yourself and expect to change the world, the world will always control you and use you as livestock. Did nobody ever tell you this?
Some doctors like to tell me they know what’s really going on, because they have credentials and awards. I often wonder why they seem to think they know about things not even in their field or what makes them superior to me, but I never get the time or interest to ask.
T,
What you call “Disneyfication” has a more formal title known as anthropomorphizing, i.e. the giving of human characteristics to animals. And, Bambi, Thumper and Flower do cohabit peacefully in nature because they are all herbivores. Carnivores do not peacefully coexist and eat herbivores, frequently while they are still alive. Nature is amoral and the ‘sheeple’ are in denial as to nature’s reality.
And yes, in the movies the bad guys never shoot straight.
But it’s NOT an inability to recognize the Islamic motivation behind current terrorism, rather it is an unwillingness… motivated by moral cowardice for some and IMO, by malicious intent on the part of some on the left.
LTEC,
“there are a great many scientists – that is, people who function successfully in the world of science – who don’t have a clue what science is.”
That has always been true.
“Most “scientists” are bottle washers and button sorters.” R.A. Heinlein
What is new is the entrenchment of PC into the sciences.
Art….
It’s possible to work the system:
One is free to change one’s name.
Adopt a surname that’s appropriate…
And send your new name right on through.
If you think it doesn’t work:
http://en.wikipedia.org/wiki/Elizabeth_Warren
She didn’t even change her name, but merely claimed a slice of native American blood.
Since no records really exist to disprove such a claim, you can fly right on through.
If you ‘go native’ use a really small tribe. You can select from any of those that own casinos out west.
Use a blood quantum above zero and below the tribe’s normal cut-off. That’s EXACTLY what Warren did.
When confronted — too late — the Harvard big shots didn’t even bring it up — with her or anyone else.
This sounds a lot like remote viewing wherein the viewer closes his eyes, thinks REAL HARD, and can see some locale miles (or light years, if you’re an Art Bell fan) distant in real time. Sound goofy? It didn’t to the military. DARPA put time and money into efforts to develop the ability.
Ymarskaer, i have autism… ie aspergers
my social skills are good, almost normal. but the closer to normal you get, the worse they treat you. i have no friends, as no one is interested in what i am, and i am one of those really smart (bronx science) self made persons who would do a lot better if i had some advocacy, rather than being taken advantage of and having no recourse.
the things they have done are pretty horrible, including locking me in a tiny room till i had a stroke. i went to see a lawyer, but they are keen on the fact that the society kind of hates white guys, and so i would not get much in a case. i would lose my job, and ageism for normal people is a big issue in IT. i have just over 10 years in on this pension, and if i leave, i will lose 5 years plus contributions, and will only have another 10 before i have to retire (and thats if it wasnt IT).
i work in research computing in a very prestigious and famous hospital. they have dont things ranging from stealing my tech, burying my work, lysing on reviews, and a lot more.
but it took me two years to get this job, and i am not young, and so am trapped in it doing what i can. i have security, great health care, 29 earned vacation days a year (paid), and would like a raise os that my wife and i could have a baby. they violate the law here all the time, but without having any place to go to and no way to win a suit, its all i can have.
it leaves me quite dispondant.
i WISH that neo would show some of my work..
i was a celebrity photographer, do incredible artwork, and so on. but am completely disconnected, and in this pc realm, that makes it easy for them to hurt me and deny me things, and so, be able to give more to minorities and women, and have a example which saves them from lawsuits.
let me know when you cure autism, and or get people to be compassionate and care. i can compete with the gbest ofthem, but am not allowed to compete, they fix the race by gaming things, and i cant do a thing about that.
i have a wife to support, a home to fund, and have no friends as aspergers people dont generally have anyone. i entered bronx sciene a year early, was homeless sleeping on a bench to get education for working, built a career. but without the social connections, i am naked and easy to hurt without any recourse.
so what do you suggest that wont ruin the small life i have? and note, what you see as a neuro typical, i dont see… not to mention that i have a very gifted skill set… but not able to sell myself.
so shoot me… put me out of my misery..
i dont want to live if i cant compete and win
nothing i can do
most of the issues is because normal people are not very nice, and do nasty things to others people.
just ask neo…
i have a portfolio of patentable tech. but no way to have a partner… not enough money to do antyhig with it, and when it comes to things like bying a house and so on, i have no idea how to go about doing that, and am quite paralized.
the austism center said i was too old to help
Geoffrey Britain,
Yes, I am aware of anthropomorphism. I intentionally chose “Disneyfication” because my (unfounded) observation is that Disney has quite a lot to do with it in this culture. Bambi, etc., Sebastian (The Little Mermaid), various creatures (Alice in Wonderland), Bernard and Miss Bianca (The Rescuers), 101 Dalmations, The Lady and the Tramp; the list is extensive and it begins with Mickey Mouse.
And while you are correct, herbivors can and do cohabit, they independently go about the business of their own survival. They do not frolic together as “friends” in the meadow.
Disney, while providing great entertainment and oftentimes good moral lessons for children, has IMO also surreptitiously contributed to this human identification of animals more than we realize and perhaps, much more than Disney ever intended. Aesop’s Fables were stories using anthropomorphism, but Disney is “The Image.” It is easier to overlook the reality of a character in a story, a mental abstraction, than it is to deny the reality of the image which is precisely why visual art has played such an important role in cultures (and perhaps why Judaism and Islam eschew it as graven).
This idea reaches an apex in Who framed Roger Rabbit?. Jessica Rabbit announces: “I’m not bad. I’m just drawn that way” which now segregates the persona of the animated Jessica Rabbit image from the “real” Jessica Rabbit (her implied reality beyond the screen).
Even if only semi- or subconsciously, we believe what we want to believe; we acknowledge that Jessica Rabbit is a reality beyond her drawn image.
blert
i have worked the system all my life
but i cant change my sex or skin color
and i cant change the policy of harming white guys if they have no connections and doing so in favor of others.
i am handicapped…
close to normal, but still handicapped
normal enough to make everyone very angry
but how do i do what your suggesting?
i have a great skill set, but no way to connect.
ageism in IT is legendary
and us aspegers people dont connet well with normal people unless they are abnormally compassionate. we frustrate people, by having our focus, and special thing, and not being able to read emotions in faces, and being blunt.
i would team up to helpl but so far every team member either humored me till i got it. except that i dont get it… or cleaned me out of what i had.
i wish i wasnt around any more..
its the only solution given how people behave.
i cant cure aspergers…
and i cant change my race or sex
i cant tell a freidn from a foe, until its way too late
among lots of other things
wish neo would put my stuff up, then maybe someone would see it and i could connect.
lots of technical inventions and solutions..
solutoin for big data too.
the place i am at took the idea, and dumped me, and the doc i was wirh was very upset about that. i also developed a few medical devices that were stolen, and i really have no reacourse…
better dead…
as what i have is not a life..
by the way. some of us with aspergers cant lie.. ie. we find lying to be intolerable… unlike normal people who lie all the time… so blert. how do i do that without lying?
to quote another aspergers person
i don’t think lying is at all typical on the spectrum- in fact the opposite, many of us lose ‘friend’s by being too honest.
brutally blunt is a good way to put it
#28 Brutal Honesty (a.k.a. rudeness)
http://stuffaspergerpeoplelike.com/2008/11/30/28-brutal-honesty-aka-rudeness/
There’s honesty. And then there’s brutal honesty. Too often the Aspie possesses the latter.
Since Asperger people would rather be truthful, it never fails that sometimes that truth hurts. Or just pisses someone off. The Aspie is so focused on stating what is true, that he or she cannot foresee how the truth might affect the other person’s feelings.
This facilitated communication is not always benign, either. In a case in Australia a young woman was taken from her parents because the “facilitated communication” indicated incest. The parents had to sell their house to fund a legal action to have her returned to their custody. Eventually they won the case, but the protective services agency refused throughout to do the kind of mind numbingly obvious double-blind experiment referred to in your post. Only at trial did the judge insist, when it all came tumbling down of course. To my knowledge, no action was ever taken against the facilitator.
Penelope Trunk states:
“Assume the person with Asperger’s is not intending to offend you. Intention to offend is actually a complicated line of reasoning that someone with Asperger’s doesn’t have…People with Asperger’s want to be nice. It’s very important to them even though you would never guess that by their actions. So if you tell the person what you want, and give specific direction, they will always try their best to do it, because they want to be nice. That said, them trying their best might look to you like not trying at all…Just because someone with Asperger’s says no right now doesn’t mean it’s no later. No is a defense mechanism for “I don’t like change.” You can try asking again a second time later.”
People with Asperger’s Can Be Honest. Very Honest!
http://www.littlebitquirky.com/2011/04/people-with-aspergers-can-be-honest.html
Many people with Asperger’s have a hard time with distorting the truth on any level. This trait can be really nice. For example, I reward my daughter if she has a good day without crying. Many times, I have no idea whether she cried. When I ask my daughter, she’ll be honest about it, even if it means she doesn’t get her reward.
But there are times when complete honesty can be problematic. Like the time when I complain about being old, and she’ll answer, “You are old!” She doesn’t understand that there are times when honesty isn’t always the best policy.
GB–“What is new is the entrenchment of PC into the sciences.”
Maybe it is not so new. Though I read it years ago, I remember Jacques Barzun wrote:
The motives behind scientism are culturally significant. They have been mixed, as usual; genuine curiosity in search of truth; the rage for certainty and for unity; and the snobbish desire to earn the label scientist when that became a high social and intellectual rank. But these efforts, even though in vain, have not been without harm, to the inventors and to the world at large. The “findings” have inspired policies affecting daily life that were enforced with the same absolute assurance as earlier ones based on religion…The case of Karl Marx is typical. Infatuated with the kudos of science, he persuaded himself and his millions of followers in and out of the Soviet Union that he had at last formulated the mechanics of history and could predict the future scientifically.” Jacques Barzun, From Dawn to Decadence: 500 Years of Western Cultural Life, 1500 to the Present
cmon neo… lets have an art and photography show…
at least those are protected by copyright…
otherwise i would say, lets show my inventions, and designs, and my savant skills…
Some of the qualities people with Asperger’s syndrome/Autism have compared to their “neuro-typical” contemporaries are as follows:
– Honest (often brutal honesty)
– Loyalty
– Hyper focus …
so its quite depressing that i cant be honest and succeed on the merit of my work!!!!!!!
that the best that normal people can tell me is to cheat, be dishonest, hurt others, and so on..
think about it..
meanwhile. i will hope i dont wake up tomorrow
but i always do… though some day, i will be right
note that i have experience as a manager, a cheif science officer, a project leader, and so on. its just that the people i now work with, wont let me do anyt of that. as they feel that someone with aspergers is like adam lanza, not einstein.. and you dont put someone like the child murderer in charge of a team…
this is the first job where i had to reveal i had autism.
given that i dont take hints, and so, didnt know that i should have left years ago. now its too late and i have no choices… hurting my family is not a choice
Artfldgr,
When you expect society to accept you or acknowledge your intellect, you give the herd power to demoralize you. You are obviously an incredibly intelligent person (97th percentile) with an awesome photographic memory. In other words you are an outlier. You are on the thin line of the far right side of the bell curve.
I will confess that I find many of your lenghty posts here annoying, sometimes off topic, and condescending; and after a glance I just scroll by. Yet, some of your posts are illuminating and indeed profound. I can not presume to tell you how to navigate the world as you perceive it; but my thought for you is to stop expecting acceptance and start living life as best as you are able, and stop waiting for the herd to welcome you as just another cow.
Great, comment thread is either spam blocking me or locking me frozen.
Since I’m getting frozen locked and if I repost, I’ll be perma banned judging from previous habits.
http://ymarsakar.wordpress.com/2014/09/26/temporary-response-to-art/
Password is:
1234
1234 is the lamest password ever and thus I must conclude a drone has killed Y and taken over his persona. Don’t come buzzing around my window unless your drone seeks a meeting with a 1400 fps 180 grain 357 mag semi jacked flat point. My reloads are far beyond a thriller in manila. Deer flee me and my S&W 686. All other species are accordingly advised, especially those of the 2 footed variety. 😉
Oh for Pete’s sake: ” Since [making his initial reports], he has tested Houben and some other patients more rigorously.”
Dr. Laurey’s further tests, as described, are pretty darn trivial. Yet “many people were deeply touched and inspired by it [the original report].” Suckers.
This is all slopbucket stuff. It is not, was not science. It really does not bear discussing.
If you think this episode is bad: my Mother is STILL insistent that “Three Cups of Tea” is the real deal.
It posits a fantasy world of helpful Muslims and secular mountaineers.
She likes the helpful natives bit so much she can’t let it go.
In that way, she’s like many of Barry’s True Believers.
They’ve conned themselves — and can’t bear to face reality.
My reloads are far beyond a thriller in manila.
I have mechanically augmented soldiers fitted with a glass shield cloaking effect, lasts for 7 seconds per shot. Also got eye in the sky remote Se[]tex armed detonators and plastic boom boom.
Termination orders are not yet in effect.
Awaiting reload of 6.5 Grendel and 6.8 SPC munitions.
blert:
“If you think this episode is bad: my Mother is STILL insistent that “Three Cups of Tea” is the real deal.
It posits a fantasy world of helpful Muslims and secular mountaineers.”
I have two good friends who made the trek to K-2. Unfortunately, they didn’t get to the summit (Few do.) However, their experience with the porters and local residents during the trip was as idyllic as described in the book. Too bad Mortenson let his imagination and greed get the best of him. He met some nice Muslims, but he’s a tad on the devious side.
Another interesting case of self delusion is the science of Global Warming. A group of scientists think they have a theory to explain the gradual warming of the last 100 years. The theory fingers CO2 caused by the burning of fossil fuels. When predictions of catastrophe are made with computer models, other scientists take an interest and begin to see weaknesses in the models and the theory. The original group of scientists violate every principle of the scientific method as stated by LTEC above: “Skepticism (including appropriate blindness), transparency about data and methods, the ability to make correct predictions;…..these are some things that are central to science.” In spite of that, the MSM, much of academia, and the left all seize on the theory of CAGW as “settled science” and demonize anyone who disagrees.
More entries for Charles Mackay’s book, “Extraordinary Popular Delusions and the Madness of Crowds.”
Most such things are fluff. Though, about 20 years ago, at the worst of my health, I was nearly labeled catatonic. What was going on inside was worlds different from what the world saw and knew. Though I am not sure anything could have helped me to communicate my inner world, thoughts, and such. Even now, many believe, in the physical world, me to be completely impared. If it weren’t for my blog, and my slow but sure ability to stay just above… death?… I might be… treated to special medical attention. Which I will fight vigorously or escape. They don’t have a facility I can’t escape… They never see me… going, either. 🙂
Not the point. But… Yeah, don’t believe because you want to believe. Even if you hadn’t seen a show dissing the notion, never believe such things. If it seems highly suspect, it’s because it is. Doubt, then look for evidence. If it’s miraculous, then don’t bother with evidence, there won’t be any. But don’t even believe your own eyes or ears.
As for the doc? Fifteen minutes of fame, but he realized it would eventually come out so a bit of cya and “new studies”, and he got the best of both worlds. Free advert times two, good press, and no harm no foul, for him. Most such are ego maniacs.
Wwweeeelllllll…This is some thread to read this morning. Whew.
Neo, Dagnabbitt, can Artie have his show, please?
Sounds like the “facilitators” were doing the Ouija Board thing, but using the autistic as their Ouija Board.