TIME Magazine and facilitated communication

Boo · 11th May 2006, 04:24 PM

The article can be found here: http://www.time.com/time/magazine/ar...191843,00.html

On May 10 Penn Jillette had Randi on his radio show to discuss the article and Randi's work in helping to debunk facilitated communication. You can download and listen to the show on Penn's radio site.

As the mother of Autistic twins my heart breaks every time I hear about another attempt to deceive other parents with schemes that do nothing but raise hopes to dash them again.

Here is my letter to TIME's editor. Comments welcome.

After reading the cover story in your May 15th issue and then the separate web piece online I would like to point out a few errors. There are at least 45 separate scientific studies that ALL disprove the validity of facilitated communication. Standing behind someone and lightly touching their shoulder is NOT facilitated communication. Holding the wrist/hand of a child that has no language and moving it over a keyboard so that profound statements about the nature of reality is nothing more then an attempt to emotionally blackmail parents desperate for some sign that their child is aware.

It seems as if there is confusion between facilitated communication and the use of keyboard devices as communication adjuncts. Some Autistics will use a keyboard device such as a laptop computer or a voice simulation program for expression, however they do so without anyone holding their wrist or hand to type. Hand over hand is also used to help some Autistics communicate but it is the child holding the hand of the individual and moving it, not the other way around. There must also be an understanding of the difference between language and communication. Pointing and grunting, shaking of the head, nodding and physical withdrawing are all forms of communication when taken in context of an activity or event. Language is used to express thought and concept either through words or standardized hand movements, i.e. sign language.

Syracuse University and other institutions that promote the use of so called facilitated communication as a way of breaking through the silence for Autistics and their families are doing them a grave injustice. As it stands now there are over 1500 therapies and 'cures' that these families must wade through in hopes of finding a treatment modality to help their loved ones. Many of these are not based on science but are scams designed to make money off the desperate hope of these families. Facilitated communication has been debunked many times over. I am very disappointed that TIME magazine chose this method as the leading point in their story.

Ninety to ninety five percent of Autistics that do not acquire language by the age of 5 will never do so. My daughter was three years old before she started using sign language, her twin brother did not do so til after he turned 5. It was only through the hard work of dedicated Speech Language Pathologists and other therapists, teachers and aides that they communicate today. This where TIME should be focusing in it's look at breaking the silence of Autistics.

Sincerely,

Boo

TobiasTheViking · 11th May 2006, 04:45 PM

couldn't agree more with you.

And i wish i could write as well as you

Please do tell us any and all replies from TIME Magazine.

andyandy · 11th May 2006, 04:49 PM

i confess I know little of the scientific research into autism....but i did spend a semester working at a special school for severly autistic children so i can imagine how difficult it must be for you to look after your kids.....

we took a group of 5-6 year olds (only 6 - 1;2 ratio) out in town to see the christmas lights.... physically they looked like any other infants - but they were all reckoned to have the mental cognition of a baby less than a year old....and as such there was plenty of screaming and tantrums -because they really didnt understand the world around them....what stuck in my mind though was all the dirty looks we got from passers by - all the judgemental stares, all the whispered comments...everyone was quick to assume that these were just "bad" kids - and that because we couldnt "control" them, that we must be terrible teachers....
and i think that's the biggest problem with autism - people really don't understand it....the older kids some of whom could speak and communicate quite well just didnt want to...at break time there'd be 15 or so kids on the tarmac, all of them on their own....none of them interacting with each other....all just lost in their own world....
and the only way to get most of them to communicate was to really "force them" - you had to try really hard to engage them....maybe the faciliated communication is a result of this "need" to force children with autism to communicate....that we can't understand their world - and so try to bring them into ours....

like i said, i really dont know about the scientific opinions on autism.. so i'd be really interested in your opinions....

capall · 11th May 2006, 05:09 PM

Boo, very eloquent letter hope TIME takes heed

TobiasTheViking · 14th May 2006, 03:16 AM

Originally Posted by capall

Boo, very eloquent letter hope TIME takes heed

i'm not holding my breath.

Angus McPresley · 14th May 2006, 05:12 AM

This article seems more pertinent to FC than the one listed above.

Boo · 14th May 2006, 07:02 AM

I agree that article is more pertinent, however it was not published in the current issue. It is available only online.

Boo

Jeff Corey · 14th May 2006, 07:19 AM

These people don't seem to be practicing the usual brand of FC. Most facilitators with otherwise completely nonverbal clients use constant physical guidance and they are the ones shown to be responsible for messages produced under controlled situations (Wheeler, et al, 1993, etc.).
I think these are cases of Unfacilitated Communication and are not typical of the majority of Bicklen's clients.

Angus McPresley · 15th May 2006, 06:14 AM

Originally Posted by Boo

I agree that article is more pertinent, however it was not published in the current issue. It is available only online.

Ah, I see. At any rate, I can sum up this second article for those too lazy to read it: "There's a lot of controversy about FC. But, I witnessed it myself, and I'm a reporter, so it must be true, regardless of what controlled studies show."

Jeff Corey · 15th May 2006, 10:21 PM

From the second article, you can see that Biklen sprang a ringer on the reporter. Completety atypically for laguage deficient autistists using FC, this man is actually looking at the keyboard and is not being guided by the trainer. In all other instances I have seen, they are staring off into space and the message is being typed by the trainer.

11th May 2006, 04:24 PM	#1
Boo ts Join Date: May 2003 Location: state of chaos Posts: 3,737	TIME Magazine and facilitated communication The article can be found here: http://www.time.com/time/magazine/ar...191843,00.html On May 10 Penn Jillette had Randi on his radio show to discuss the article and Randi's work in helping to debunk facilitated communication. You can download and listen to the show on Penn's radio site. As the mother of Autistic twins my heart breaks every time I hear about another attempt to deceive other parents with schemes that do nothing but raise hopes to dash them again. Here is my letter to TIME's editor. Comments welcome. After reading the cover story in your May 15th issue and then the separate web piece online I would like to point out a few errors. There are at least 45 separate scientific studies that ALL disprove the validity of facilitated communication. Standing behind someone and lightly touching their shoulder is NOT facilitated communication. Holding the wrist/hand of a child that has no language and moving it over a keyboard so that profound statements about the nature of reality is nothing more then an attempt to emotionally blackmail parents desperate for some sign that their child is aware. It seems as if there is confusion between facilitated communication and the use of keyboard devices as communication adjuncts. Some Autistics will use a keyboard device such as a laptop computer or a voice simulation program for expression, however they do so without anyone holding their wrist or hand to type. Hand over hand is also used to help some Autistics communicate but it is the child holding the hand of the individual and moving it, not the other way around. There must also be an understanding of the difference between language and communication. Pointing and grunting, shaking of the head, nodding and physical withdrawing are all forms of communication when taken in context of an activity or event. Language is used to express thought and concept either through words or standardized hand movements, i.e. sign language. Syracuse University and other institutions that promote the use of so called facilitated communication as a way of breaking through the silence for Autistics and their families are doing them a grave injustice. As it stands now there are over 1500 therapies and 'cures' that these families must wade through in hopes of finding a treatment modality to help their loved ones. Many of these are not based on science but are scams designed to make money off the desperate hope of these families. Facilitated communication has been debunked many times over. I am very disappointed that TIME magazine chose this method as the leading point in their story. Ninety to ninety five percent of Autistics that do not acquire language by the age of 5 will never do so. My daughter was three years old before she started using sign language, her twin brother did not do so til after he turned 5. It was only through the hard work of dedicated Speech Language Pathologists and other therapists, teachers and aides that they communicate today. This where TIME should be focusing in it's look at breaking the silence of Autistics. Sincerely, Boo
	__________________ Wounds heal. Morally Obtuse. Learn the rules so you know how to break them properly.

11th May 2006, 04:45 PM	#2
TobiasTheViking Resident Asperger Autist Join Date: Jun 2005 Location: U.S.S.A Posts: 5,437	couldn't agree more with you. And i wish i could write as well as you Please do tell us any and all replies from TIME Magazine.
	__________________ <Cleon> Tobias: We've been through this. I'm not gay, I'm just pathetic. There's a difference. <kate> I, Kate Holden, being of weird mind and awkward body, do take TobiasTheCommie to be my unlawfully wedded chathusband. <Nobby> He pricked me with his prick. That prick!

14th May 2006, 03:16 AM	#5
TobiasTheViking Resident Asperger Autist Join Date: Jun 2005 Location: U.S.S.A Posts: 5,437	Originally Posted by capall Boo, very eloquent letter hope TIME takes heed i'm not holding my breath.
	__________________ <Cleon> Tobias: We've been through this. I'm not gay, I'm just pathetic. There's a difference. <kate> I, Kate Holden, being of weird mind and awkward body, do take TobiasTheCommie to be my unlawfully wedded chathusband. <Nobby> He pricked me with his prick. That prick!

14th May 2006, 05:12 AM	#6
Angus McPresley Muse Join Date: Jan 2006 Location: Melbourne, Australia Posts: 599	This article seems more pertinent to FC than the one listed above.
	__________________ I can find no fault with Pascal's Wager. And so, I've decided to worship Thor.

14th May 2006, 07:02 AM	#7
Boo ts Join Date: May 2003 Location: state of chaos Posts: 3,737	I agree that article is more pertinent, however it was not published in the current issue. It is available only online. Boo
	__________________ Wounds heal. Morally Obtuse. Learn the rules so you know how to break them properly.

11th May 2006, 04:49 PM	#3
andyandy anthropomorphic ape Join Date: Apr 2006 Location: up a tree Posts: 5,805	i confess I know little of the scientific research into autism....but i did spend a semester working at a special school for severly autistic children so i can imagine how difficult it must be for you to look after your kids..... we took a group of 5-6 year olds (only 6 - 1;2 ratio) out in town to see the christmas lights.... physically they looked like any other infants - but they were all reckoned to have the mental cognition of a baby less than a year old....and as such there was plenty of screaming and tantrums -because they really didnt understand the world around them....what stuck in my mind though was all the dirty looks we got from passers by - all the judgemental stares, all the whispered comments...everyone was quick to assume that these were just "bad" kids - and that because we couldnt "control" them, that we must be terrible teachers.... and i think that's the biggest problem with autism - people really don't understand it....the older kids some of whom could speak and communicate quite well just didnt want to...at break time there'd be 15 or so kids on the tarmac, all of them on their own....none of them interacting with each other....all just lost in their own world.... and the only way to get most of them to communicate was to really "force them" - you had to try really hard to engage them....maybe the faciliated communication is a result of this "need" to force children with autism to communicate....that we can't understand their world - and so try to bring them into ours.... like i said, i really dont know about the scientific opinions on autism.. so i'd be really interested in your opinions....

11th May 2006, 05:09 PM	#4
capall New Blood Join Date: Apr 2006 Location: Texas Posts: 20	Boo, very eloquent letter hope TIME takes heed

14th May 2006, 07:19 AM	#8
Jeff Corey New York Skeptic Join Date: Aug 2001 Posts: 9,409	These people don't seem to be practicing the usual brand of FC. Most facilitators with otherwise completely nonverbal clients use constant physical guidance and they are the ones shown to be responsible for messages produced under controlled situations (Wheeler, et al, 1993, etc.). I think these are cases of Unfacilitated Communication and are not typical of the majority of Bicklen's clients.

15th May 2006, 06:14 AM	#9
Angus McPresley Muse Join Date: Jan 2006 Location: Melbourne, Australia Posts: 599	Originally Posted by Boo I agree that article is more pertinent, however it was not published in the current issue. It is available only online. Ah, I see. At any rate, I can sum up this second article for those too lazy to read it: "There's a lot of controversy about FC. But, I witnessed it myself, and I'm a reporter, so it must be true, regardless of what controlled studies show."
	__________________ I can find no fault with Pascal's Wager. And so, I've decided to worship Thor.