Autism can be a devastating affliction. Children suffering from it seem to be totally cut off from the outside, unable to communicate with their siblings and parents. As a parent myself, I can only imagine how awful it must be to have a child with autism.
However, situations like this bring the quacks, the con-artists, and the anti-scientists out in droves. I won’t go into the quackery involving MMR vaccines and autism, except to point you to Orac’s blog, where he takes on such nonsense.
Another recent development in autism care is the use of so-called "facilitated communication". In such a practice, the autistic child is given a computer keyboard, and with the help of someone to support their hand — the "facilitator" — the child is, in many cases, seen to type out simple messages. It must seem like a miracle to parents, to be able to finally communicate with a child they love so desperately.
However, there is a problem– how do you know if the child is actually typing the message, or it’s just the facilitator guiding the child’s hand? It’s well known that people can use their hands — consciously or without their knowing — to guide an object. That’s how Ouija boards "work", for example. Is the facilitator supporting the autistic child’s hand, or is it guiding it?
Unfortunately, when tested carefully, facilitated communication has been shown to be the latter. It doesn’t work. It may appear to work, but what is happening is that the facilitator, willingly or not, is pushing the hand to type out the messages.
This is the absolute worst kind of skepticism to have to use: it leads to yet another crushing blow to loving parents who would do anything to talk to their child. How do you break the news to them that what they thought were their child’s responses were in reality no such thing?
Skeptics are not monsters. We just want the truth, and sometimes the truth is very, very difficult.
But it’s just been made harder by Time magazine, which has a cover story about autism and facilitated communication. I heard about it through James Randi, who sent out an email. Here it is in its entirety:
Link to CNN article about Time magazine
Incredible! That TIME Magazine could run a COVER STORY on the latest witchcraft, endorsing the nonsense that Douglas Biklen and others have espoused as real medicine, is a tragedy. It was bad enough that in the past they featured America’s second-most-famous quack, Andrew Weil, on TWO covers. Now they have glorified this cruel, pseudoscientific notion called “facilitated communication†[FC] at the expense of those afflicted with autism – and their families – who will accept what TIME says as the truth.
It is NOT. It’s a damnable lie. “Facilitated Communication†does NOT work. It takes the victims and their families for a brief joyride, then they find out that they’ve been conned, swindled, lied to. Thank you, Syracuse University, for cultivating this vicious joke, and for supporting Biklen and his team of goons who have ruined the lives of so many innocent people by giving them hope, showing them faked demos, and then walking away from those devastated victims.
No, I’m not a doctor, but I know my subject – very well. I offer the million-dollar prize of this Foundation – as I’ve offered it in past years – to ANYONE who can demonstrate that FC works on autism victims who are otherwise unable to communicate with the outside world. These people will not step forward and accept that challenge.
On October 19, 1993, PBS’s Frontline program was “Prisoners of Silence,†which demonstrated clearly – as I did in Madison, Wisconsin, years before – that FC is unscientific, quackery, and a farce. TIME seems to be unaware of that fact, or has chosen to ignore it in order to run this cruel story.
TIME must answer for this dreadful attack on rationality and medical science.
See www.randi.org/jr/080505potential.html#16 and www.randi.org/jr/200511/111105derek.html#i7. Also, www.pbs.org/wgbh/pages/frontline/programs/transcripts/1202.html. This is hard evidence that the quacks – and TIME Magazine – cannot deny.
James Randi
As in many cases when dealing with such things, this is not my field, so I must rely on the work of others. Randi has done outstanding work in such things, and the links at the bottom of his article will show you just how many professional organizations recommend against the use of facilitated communication.
Being a skeptic means having to face some hard, harsh realities. The truth can, sometimes, be no fun at all, but in reality it’s all we have.
May 11th, 2006 at 1:31 am
Phil refers to FC as a “recent development”. However, the article he quotes from James Randi mentions that FC was initially debunked at least a dozen years ago. I do recall what was going on then, and the debunking was thorough. I had a friend who had a son with autism. She became very upset when I tried to clue her in to the fact that FC was probably nonsense. (And her son was not so bad off that he was totally incapable of communicating without FC.) That conflict effectively ended our friendship.
May 11th, 2006 at 2:52 am
I’ve got a colleague with an autistic sibling, and she’s constantly gobsmacked by the nonsense coming out of some of these people. The most shocking being the suggestion that chemical castration is a viable treatment.
May 11th, 2006 at 4:09 am
There was an episode of Law and Order many years ago (I don’t remember exactly when) where a boy who has major disabilites may have witnessed a crime and there is a court room test of FC. The prosecution shows the boy a set of images with the mother (who is the facilitator) not looking. “He” types the wrong thing each time.
It was a good episode, and it ends with some of the laywers feeling bad for the mom who has just discovered that she has been typing to herself for quite some time.
May 11th, 2006 at 5:20 am
Having an ASD myself I checked this out with our National Autistic Society and they have this document which echoes similar criticisms such as
May 11th, 2006 at 6:33 am
I’ve had a few encounters with autistic children and I know I would have a hard time dealing with it. But when it comes down to it the reason these people(quacks and con artists) go after the parents is because they know they love their children and will do anything for them. I hope that when I have children they’re nice and healthy with no problems other than maybe being overly skeptical.
Skepticism is a very healthy thing to have even if it’s not pleasant at times. The truth is something that should always be attained even when what it’s saying isn’t what we want to hear.
Nice site. Keep it up.
May 11th, 2006 at 7:21 am
I was going to mention the Law & Order episode too, but I see Zachary beat me to it. Good job on the fast recall. I think the episode was “Cruel and Unusual“, which aired during the fifth season on 19 April 1995.
May 11th, 2006 at 7:24 am
The question of skeptics depriving people of hope has come up before in my life, and I had a hard time justifying it until I concluded that I was protecting the desperate from being victimized by con artists. A family member was seriously ill, and the question of alternative treatments came up. Fortunately, she recovered with the aid of good old western medicine, because I really didn’t want to be the one to say “We aren’t mortgaging the house to pay some quack”, especially when you throw the placebo effect into the mix. It’s tough, and it has to be worse when kids are involved.
May 11th, 2006 at 8:30 am
Yes, skeptics are frequently criticized for spoiling people’s “fun”.
“What’s the harm with people believing in psychics or being able to talk to dead relatives? It makes them happy.”
With FC we are finding out what the harm is.
May 11th, 2006 at 9:30 am
At one time FC attracted all kinds of weirdos to it. Now it’s not like that. FC works, there are prinicples behind the fact that autistic people can’t always move their hands on their own but can with someone helping. The thing is that the faciliator works on become less and less needed so that the person can type independently. Believe it or not all FC is not bunk. It’s real.
If you go to http://www.gettingthetruthout.org and read through it all the way, you’ll learn what autism is and why people shouldn’t be using phrases like, “devastating.” Autistic people read. How would you like to read that the effect *of you* was devastating on your parents. Autistics don’t separate autism from who they are.
http://ballastexistenz.autistics.org/?p=85
http://www.gettingthetruthout.org/pagee001.html
I think that’s on this week’s Skeptic’s Circle.
I realize it’s easy to slam FC, but it’s not a good idea. More kids should be using it to learn to communicate independently as much as possible.
May 11th, 2006 at 9:43 am
Great post! Reminds me of this great, great quote I saw in Wikipedia:
“Scientists are a bunch of killjoys, but they have a disconcerting habit of backing up their arguments with actual evidence” — Robert Merkel (he’s a Wikipedian)
Pretty much sums it up.
May 11th, 2006 at 9:55 am
Ms Clark, are you up for Randi’s million dollar challenge? Sounds like you have proof. You could be rich, if you’re not just saying it works because somebody else told you that it does without offering you anything beyond glowing anecdotes.
Most FC practitioners are probably not con artists. In fact, most purveyors of useless treatments mean very well. They honestly do not realize the harm they are doing, or that their treatments are ineffective. They are a case in point of the statement that a little bit of knowledge is a dangerous thing. They know enough to convince themselves and others, but not enough to really understand what’s going on.
There was a family who wanted their severely retarded child admitted into the high school marching band. This child could not play a musical instrument. This child was barely responsive to the outside world. The child was not autistic; this child had other problems. They claimed to be able to communicate with him because he could get yes/no questions right 50% of the time by signalling with his eyes.
Sadly, a lot of people don’t see what’s wrong with that claim. (For the statistically challenged, it means the child is performing exactly as well as a tossed coin — there is therefore no evidence of intent.) And that one’s much easier to see than the problem with facilitated communication.
I have every respect for autistic people. I am related to a high-functioning autistic person. Some can pass for normal. Some cannot feed themselves. There is a huge variety. Indeed, some can read. But not all. And while you may not find the word “devastating” to be particularily PC, in some cases it is quite accurate. If your child will never be able to function independently, your future has now been proscribed in a way you never expected. Is it selfish to feel devastated? Should parents of autistic children be made to feel guilty for dreading such a diagnosis? Absolutely not. It *is* a devastating diagnosis. But after you learn about it, you deal with it. Should the kids feel guilty for being a burden? No. They can’t help it, and their parents generally would not want them to feel guilty for it. But it is what it is, and deluding parents will not help the situation at all.
May 11th, 2006 at 9:58 am
Ms. Clark, FC practitioners are welcome to win a million dollars any time. If it works as well as they say it does then they should have no problem with that. And if they aren’t interested in the money, they can donate it to charity or use it to fund their work, or simply not accept it. At the very least they will be able to say that it stood up to rigorous scientific scrutiny. If they don’t like Randi there are a lot of other rewards available from organizations that are not affiliated with him in any way. So far FC has been shown to be the result of the facilitator, not the subject, most or all of the time. They are welcome to demonstrate otherwise, under rigorous scientific controls, at any time. Anecdotes and studies without proper controls are not acceptable.
May 11th, 2006 at 12:54 pm
I’ve never been convinced that depriving people of a false hope is a bad thing. Removing false hope means accepting reality, and accepting reality is the first step toward getting on with your life in a positive way.
May 11th, 2006 at 1:37 pm
Yesterdays Penn Gilette podcast was about this and had james randi on the show. http://WWW.penn.freefm.com
May 11th, 2006 at 2:09 pm
Not too long ago (2004) CNN broadcast some production called “Autism is a World”. It centered on one profoundly autistic woman who suddenly showed strong verbal skills via FC. The woman supposedly wrote the narration for the film, which received an Oscar nomination. However, rather than appearing eager to communicate, the woman seemed to be merely complying with her chaperone. I don’t recall CNN even mentioning the skepticism surrounding FC. I was appalled that CNN would be suckered this badly.
May 11th, 2006 at 3:02 pm
Ms. Clark:
Well, then it’s not “facilitated communication” is it? It’s “teaching to type”.
Until the client actually learns to type there is no communication beyond the influence of the “facilitator”, so FC is still a useless concept.
May 11th, 2006 at 9:41 pm
As a linguist very interested in cognition I’ve been boning up on some new views of autism, including one that claims that the various problems under the umbrella term can largely be ascribed to overmasculinization of the brain, which greatly exaggerates the differential tendencies already seen between your average man and woman.
If this new idea is correct, then the deficits are deep and structural, and unlikely to be helped much by anything like FC.
Jess Tauber
May 12th, 2006 at 12:37 am
My understanding is that Autism and Autisic Spectrum Disorders are a subset of neurodiverse conditions, including dyslexia, dispraxia , tourettes, ADHD. A neurodiverse condition is sort of a miss-wiring of the brain, sort of like the original pentium chip which had a flaw that made it get certain sums wrong.
May 12th, 2006 at 1:08 am
You know, if FC was ever to be taken seriously, it’d just have to create some sort of “facilitation” apparatus for the wrist and arm. After all, if they’re just assisting in a movement the patient is trying to make, it should be possible to program a machine to do the same thing.
It’s kind of telling that (as far as I know) nobody in the FC field seems to be trying to make such a breakthrough.
May 12th, 2006 at 7:17 am
Kev takes ‘em on twice while Orac sits back…
Tara’s post yesterday about Mercury and Mythology about how mercury in vaccines does not cause autism and about a recent story demonstrating tht mercury as used in dental amalgams is safe, coupled with Phil Plait’s discussion of an article in……
May 12th, 2006 at 8:06 am
Years ago(1993) I had the good fortune to experience drumming with Mr. Remo, of Remo drum skins. He had designed and built a six sided drum table that allowed people with various neurological deficits ( Alzheimers, dementia, etc)to sit and drum with one another. I know music is a very high level form of communication and the feel of vibrations in the skin of the table may facilitate that effort. I wonder how drumming would work with an autistic individual? The major emphasis in this example is on call and response, something I understand autistic folk are generally unable to do in a vocalized setting, but drumming is much easier than speech.
At any rate, it might be worth trying. Who knows, perhaps a little success in one area might feedback to improvement in another. Don’t know ’til we try.
GAry 7
May 12th, 2006 at 8:12 am
From what I understand, people that have severe enough autism to use FC are often those that can’t learn to read. So how are they supposed to be able to know how to type on a keyboard?
Also, wouldn’t playing Ouija exclusively with people that are illiterate bring better results?
May 12th, 2006 at 7:47 pm
This just goes to show how aweful pseudoscience can be sometimes.
Getting one’s hopes up, only to find it either doesn’t work or is just a scam really must hurt.
Great lines at the ending of the entry, BA. So very true.
May 12th, 2006 at 9:33 pm
This reminds me of Heracles slaying the hydra, you kill one head and before you know it two heads pop up in its place. FC has been around at least 15 years, when it is put to the test it ultimately fails. Why does it keep popping up? Maybe for the same reasons we still have astrology and psychics, you’ll get to hear what you want to hear so long as you believe. Put it to the test and it falls down like a house of cards.
May 13th, 2006 at 1:40 pm
As someone with Asperger’s Sydrome myself and the parent of a child with AS (and an uncle to a nephew with autism), I am all too familiar with dealing with all of the pseudo-scence and other misinformation that surrounds autism spectrum disorders.
It is very, very painful to watch my son have go through the same living hell I did as a kid, being picked on, bullied incessantly, not being able to “connect” with the other kids in school, being the “odd one,” the nerd, geek, etc. Not having any friends, feeling like, as my son puts it, “All of the other kids hate me.” Dealing with the tantrums, the depression, the anxiety and paranoia; it hurts like hell. To add insult to all of that is all the pseudo-science and quackery that one has to wade through to find help.
If I come off angry, it’s because I am. We are directly affected by the con artists, quacks, and pseudo-science pushers who seem to be able to outshine, shove aside, and elbow their way in between the real science that offers real potential for help. Things like the Time Magazine article just add to this crap. And the only voices out there to counter the high-profile nonsense are blogs like this one — with much smaller audiences and far less influence and impact than outlets like Time Magazine.
It sucks folks. Yes, being a parent to a child with autism sucks. Being an adult with autism sucks.
May 13th, 2006 at 11:39 pm
Jeff,
I feel your pain man, I really do. I got razed and picked on until finally I moved to Ohio and was considered normal I guess.
Kids can be cruel but so can Teachers too and I hope there is a special place for these folks, God forgive me.
Not one child should ever be fearful of going to school!