From Abracadabra to Zombies
reader comments: facilitated communication
5 May 2016
I was reading your section on the autistic author Ido Kedar. Several commenters raised the issue that Ido claims that he sees auras around people, the colors of which vary with the degree of skepticism which with a person views his abilities. The objection implies that the claim arises from parents who want so badly to make other people believe their child is communicating that they cling to the idea that the child is qualifying the people he will communicate with by their level of belief. What Ido actually says in his book 'Ido in Autismland' is that in many cases the auras do not follow this pattern, and that often the aura precedes his knowledge of the level of skepticism that emerges. From what he says, the objection is rendered invalid.
Not only that, it helps if I see a blue glow. I don’t mean to hurt anyone’s feeling but some people I love are brown, red and yellow. This is hard to explain. My mom is blue and my dad is yellow. He is the greatest dad I could imagine but when I see yellow I get tense when we point. I wish I could overcome this because I’m dying to joke with him. I can do math equations with him, no problem, so I’m starting to get over my issue. I don’t see why it matters what color the glow is because I trust my dad, so I need to see yellow as a sunray not a stopping ray. My aide is green. That’s not blue or yellow. My old aide was yellow. I even overcame that because I needed to communicate so badly in school. My point is that the glow affects me emotionally. It is like another sense causing me to be selective with the people I point with, but intellectually I know that it’s not really accurate because some great people are yellow or other colors. It’s my intention to find a way to point with all people, though I may never relax if someone tells me “touch your nose." “That is a very brown glow, I’m telling you."
It's easy to stand in the 'expert' role and dismiss all claims of normal cognition in non-verbal communicators, but that is an unacceptable methodology even in scientific terms. We have no knowledge of what autism is except by observing the external behaviors of affected persons. We cannot understand autism and judge the veracity of those affected without at least attempting to listen to them, by any mode of communication that has a chance of being effective.
Blind skepticism that dismisses the very possibility that the non-verbal can have normal cognition is destructive to the investigation. Ido Kedar and other autistic authors give information in their writings that answer every objection raised in your reader's comments to the idea that their communications are valid. A study of the writings of Ido and other autistic persons reveals strikingly consistent descriptions of the altered sensory functions, extreme anxiety, impulsivity, and difficulty with initiation of action that they characterize as features of their autism. At the same time, their descriptions are extremely variant on their internal, subjective experiences of the disorder. The pattern of consistent, similarly reflective, and yet descriptively original material defies the conclusion that the parents are confabulating random stories or that they have copied from some 'playbook' in the autistic caregiver community.
The medical model of autism already acknowledges the problems with sensory overload, inhibited initiation, extreme anxiety, and impulsivity that the authors describe in themselves. The model admits the possibility that anxiety of being tested increases the level of expression of the other features, and thus affects the ability of the autistic person to perform tasks that are already close to impossible.
The idea that parents and aides are sitting hours and days and weeks and years transcribing whole books as they subconsciously guide their child's hand letter by letter by the elbow is preposterous in and of itself.
reply: No, it isn't preposterous in and of itself.
I can't imagine what it would take for the experts to admit that they don't know everything there is to know about autism. Experts knew all there was to know about mental illnesses in the old asylums. They knew that ulcers are caused by stress, and hysteria by the uterus. Throughout time, experts have had to be forced to reevaluate their certainties. At least read these authors' remarkable books before you judge; go look them in the eyes before you lock them forever away in silence. Then throw away the key, if you still can.
reply: When I posted the first reader's comments on Ido, no expert was involved. The article the reader cited was mostly a journalist's impression of what he witnessed. I stand by my first impression: "If this is a true story about how an iPad can do what thousands of well-meaning teachers, medical specialists, and others have failed to do, then Curwen should get his Pulitzer and Apple should be given a Nobel Prize or at least a Presidential Medal of Freedom." Let the research continue. Experts in this field will not be reluctant to admit they were wrong if the evidence proves they were, unlike the non-experts who will believe what they want to believe no matter what the evidence.
23 Dec 2013
Dear Dr. Carroll,
I wanted you to know about this story in today’s L.A. Times ["In the 'silent prison' of autism, Ido speaks out" by Thomas Curwen] about autistic teenager Ido Kedar, who can’t talk but has written a book(!) The story is completely believable, but there are a few hints that his communication is facilitated by has caregivers—for instance, he can “write” faster by pointing to letters on a solid board than he can using an iPad—rather than his own words. There is also the unfortunate paragraph describing how he can see auras—skeptics and other people he doesn’t like have a brown aura.
I wish that non-verbal kids like this really could communicate, and wonder if he has been properly tested. It is also surprising that so many have bought into his story; he was invited to “address” graduates at Cal State Northridge’s special education department commencement, for example. Unfortunately, the vast difference between “his” printed “words” is so vastly different from his routine abilities—saying “osha, osha, osha,” on a hot day to ask to be taken to the ocean—makes me think that it is far more likely that the words really come from his mother and other helpers. It seems as if he uses the iPad on his own but v-e-r-y s-l-o-w-l-y, so perhaps he does have some skills which are masked by his disability. But I question whether he really did type “I think Autismland is a surreal place” entirely on his own.
I’m going to write to the Los Angeles Times with my concerns about the lack of any dissenting voices in their article, and how the false hope this gives to parents of severely disabled children is a disservice to them at best and deeply harmful at worst.
I realize that you don’t have time to respond to emails such as this, but I’d be interested in your take on this story. I’ve looked online, and facilitated communication is still all the rage among a variety of educators and other specialists.
Curwen's feel-good story about Ido Kedar reads, as do most feel-good stories, more like a promotional piece than the result of investigative journalism. Curwen shows no indication that he's aware either of the astounding, revolutionary nature of the claims being made on Ido's behalf or of the skepticism likely to be aroused in the medical and special education communities. Curwen willingly allows Ido's parents, Sharon and Tracy Ido, to blame Ido's teachers for failing to recognize the bright person inside the mute body.
Some of his worst teachers have become his best teachers for what not to do, and he thinks he knows why.
They have to let go of their love of power.
The only evidence Curwen presents to verify that Ido can really communicate at a high level on the iPad is the implication that he witnessed Ido type out very slowly the words "I think Autismland is a surreal place." Other than that implied observation, Curwen relies on the testimony of Ido's parents for evidence that Ido communicates at a high level and even wrote a book on the iPad.
You would think that the folks at Apple would love to get on this bandwagon. Ido could be the poster boy for iPad Facilitated Communication and Apple could be seen as the savior of thousands of locked-in minds that the rest of the medical community has mistreated for generations.
Curwen tells us, however, that the iPad is not Ido's (or his parents'?) favored method of communication because it is too slow.
Sitting in the living room, Tracy, Sharon and a friend, Adrienne Johnston, are helping Ido organize his thoughts. He is communicating with his letter board, a laminated piece of cardboard with the alphabet printed on it. His right hand dances among the letters, a blur of quick expression, far quicker than his iPad.
A photo accompanying Curwen's story shows that Ido's aide holds the letter board, not Ido's hand, as he points to letters. This is not typical of facilitated communication (supported typing). The aide cannot be guiding Ido's finger with this method. How the aide works is not clear from the article. Does she utter letters, words, complete thoughts, as she witnesses a "blur of quick expression"? We don't know. In any case, Curwen does not investigate the method or verify the accuracy of the aide's work. The word of the parents and the aide herself are all we have to rely on for the validity of this method and the reliability of this aide.
I agree that such stories give false hope to desperate parents. If this is a scam being pulled off by Ido's parents, they deserve to be exposed. If this is just another case of delusion and misguided belief based on hope by the helper and the parents, then the journalist deserves to be chastised for actively promoting the delusion. If this is a true story about how an iPad can do what thousands of well-meaning teachers, medical specialists, and others have failed to do, then Curwen should get his Pulitzer and Apple should be given a Nobel Prize or at least a Presidential Medal of Freedom.
I have to admit that one of the things that makes me skeptical of this story is the bit about Ido seeing auras. How did he find out about auras? And isn't it curious that he sees purple as "the most open-minded color, brown the most closed off." The teachers that failed to see and unlock his intelligence, he allegedly tells us, have brown auras.
I was reading your commentary on facilitated communication with Ido Kedar. As you note, the research on facilitated communication has consistently demonstrated that it is not a valid or reliable means of communication. As you also noted, as the assistant is holding the board, as opposed to supporting his hand, it is not clear that this would qualify as facilitated communication. However, in reading the articles associated with Ido, the question it raised for me is the diagnosis and how headlines like this raise false hopes for families of children with autism. In what I read, the main feature he presents with is lack of verbal communication, with no description of the social pragmatic deficits, lack of social reciprocity, sensory issues or other defining characteristics of autism. Use of an IPAD or letter board for individuals with verbal apraxia is a very successful intervention as these children truly have a “body that will not respond” in that the ability to co-ordinate the complex motor movements of speech are impaired. In reading articles in popular media, as opposed to journals, I am always skeptical of diagnostic labels if there is no qualified individual explaining why the subject meets the criteria for the diagnosis. This is particularly true as the use of the term “autism” has become so broad with individuals who are socially awkward labelling themselves as “Aspergers” or medical doctors providing the diagnosis for individuals with “some symptoms” as it is felt that this will enable the child to access special education services or other assistive programs. As a result, the community understanding of what autism actually is has become quite skewed. Articles in popular media will describe feel good stories of “autistic children” and my first layer of skepticism when reading of the success is to question whether the diagnosis or the outcome is the issue.
Having said this, I will say that use of the IPad for individuals with verbal apraxia can be extremely beneficial. In using it with autistic children, one can also get students engaged and responding to the stimuli on the IPad and it is an effective tool to help them participate. However, to say it “unlocks” them is a totally different issue.
Rosanne Field, Ph.D., C. Psych.
reply: There's a very interesting article posted in the Prescott, Arizona, Daily Courier, about a young girl with apraxia who uses an iPad to assist her communicate. I'd never heard of this disorder before. Another article describes it this way: "Verbal apraxia affects the consistent coordination of the parts of the mouth involved in speech like the tongue, lips, and lower jaw."
Definitions are important because government agencies and insurance programs use them to determine who gets treatment and who gets funded for treatment. What is autism? What is Asperger's? What determines an 'autism spectrum disorder'? Since these are symptom-defined disorders, their definitions vary from person to person, time to time, place to place, and often depend on who has the power to control the language...or the media.
21 Feb 2004
Perhaps a slight inaccuracy - Crossley was a computer programmer not a nurse, least is, that's what she told me in a mad taxi ride across Melbourne about 20 years ago. I also met Anne McDonald and she seemed quite bright, although I question her ability to have achieved academic credits through FC, and the whole FC movement.
However, my point is that FC should not be confused with communication facilitators who strictly, more or less, translate for their client. I have met several good examples. PH, a friend of my wife, is deaf/blind (as is my wife- but only partly both ways). PH has been able to achieve two degrees from the University of Queensland, and I can assure you that her work was her own and good. BB was a man born profoundly deaf and blind who, when I met him, was in the third year of a sociology degree. BB could read Braille and used a PC with a Braille touch strip. Both used various communication facilitators who use hand-to-hand communication. In my travels I have met other examples. My great regret is that I missed meeting Christy Brown by a whisker. He and I were born about the same time but on opposite side of the earth. We did write as we had the communality of both being born with cerebral palsy, although mine was somewhat less in degree in that I did learn to walk, or more stagger rather. He, however, was the genius. Although I have written several books, my writing does no reach the elysian heights of a Christy Brown book. My forte was in academia.
Rex Newsome, B.SC, PHD., FAPS.
Love your home page. . . the Skeptic's Dictionary. . .SavvySearch.
I am a psychologist in NY. Graduate of SUNY Buffalo. I've become more skeptical over the years. I always used to enjoy Mark Crystal, James Randi and others debunking persons with claimed psi powers in the next lab.
I co-ordinate psychologists who work with the mentally retarded. I am in a battle trying bring some sanity to the apostles of Facilitated Communication, and other crazy fads....I often don't feel I am articulate or persuasive enough. At the same time, I keep trying to come up with treatments that can be empirically validated, primarily behavioral.
Interestingly, the psychologists I work with are the most skeptical and resourceful clinicians working at the agency.
The power of these people is scary.
Keep up the good work. . .
2 Oct 1996
You said of Facilitated Communication: "When facilitators have been tested under controlled conditions they fail miserably."
See Michael J. Salomon Weiss, Sheldon H. Wagner, and Margaret L. Bauman, "A Validated Case Study of Facilitated Communication," Mental Retardation Vol. 34, No. 4, 220-230, August 1996.
Extract: "The experimenter in the protocol (the first author) had been a consultant for Kenny's school program for approximately one year prior to Kenny's introduction to facilitated communication. It is noteworthy that the experimenter was originally quite skeptical about facilitated communication, as can be seen from the following newspaper account: Michael Weiss, a clinical psychologist who has worked with developmentally disabled children in New Bedford, is also concerned [about facilitated communication]. "There's a rich tradition in how we judge whether something is true.... It gets reviewed by peers and has to pass a certain standard," he said. "What I'm unnerved about with the facilitated communication people is that there's almost a refusal to adhere to this standard." Asked why he thinks Dr. Biklen and company won't do such studies, Dr. Weiss replied, "What rings true in my ears is that the thing is a bloody hoax. (Experimental technique, 1992)" Weiss then went on to test it, did a study, and got positive results.
" Abstract: The case of a 13-year-old boy with autism, severe mental retardation, and a seizure disorder who was able to demonstrate valid facilitated communication was described. In three independent trials, short stories were presented to him, followed by validation test procedures with an uninformed facilitator providing physical support to the subject's arm. In Trials 1 and 3, several specific answers were provided that clearly indicated that the young man, not the uninformed facilitator, was the source of the information. Moreover, some responses seemed to imply that the subject was employing simple inferential and abstract reasoning. This case study adds to the small, but growing number of demonstrations that facilitated communication can sometimes be a valid method for at least some individuals with developmental disabilities."
There's also a larger study in the same issue of Mental Retardation, also recording positive findings.
Well; does that count as an instance of a facilitator tested under controlled conditions (*where others beside the defenders of FC have set up the experiments*) who did not fail miserably? If not, what would? If so, does that open a crack to make the arguments?
The basic point I'm trying to get across is that yes, if you put forward a proposition that goes against the accepted laws of physics then you're probably wrong. However, if you put forward a proposition that goes against the accepted laws of psychology you'd have to write them first.
Remember, we are talking about people who refer to FC as "...an inappropriate challenge to professional belief systems.." (Howard Shane). And those professional belief systems are pretty rigid. If you're not a member of one of those professions, FC doesn't sound particularly out of line.
Here's one basic starter, from Australia.
"A Rationale for the Use of Facilitated Communication Training
1. Many people with severe communication impairment (SCI) know more words than they are able to say.
2 People with SCI who know more words than they are able to say may be able to expand their expressive communication by using alternative and augmentative communication (AAC) strategies.
3. Many people with SCI have hand function impairments which affect their ability to write or use manual sign or make selections from communication displays.
4. Some people with SCI and impaired hand function can use AAC equipment which does not require hand skills to expand their expressive communication. Some people with SCI and impaired hand function cannot use such equipment, either for practical reasons (because they walk, for example, and need less bulky devices) or because of the nature of their neuromotor impairments (because, for example, they have impulsivity).
5. People with SCI and hand function impairments who cannot use other AAC strategies may be able to use their hands to access communication aids if their hand function impairments are remedied either temporarily or permanently.
6 For some people with SCI, facilitation can provide a temporary remedy for hand function impairments affecting communication aid use, and when used as part of a structured teaching program may result in a permanent improvement in hand function."
Not exactly witchcraft.
reply: No, not witchcraft. I don't deny that many people are helped by facilitators. I mentioned above that I have had students who use facilitators. I also noted that it is well-known that there is no necessary connection between a physical handicap and mental ability. It is not my intention to suggest a priori that no research in this area will prove fruitful. I think, however, that this is an area where self-deception and wishful thinking can be especially invasive. What parent would not want their child to be "normal?" I believe it is imperative that those doing research in this area propose a testable theory of FC. Someone needs to address the issue of how FC occurs, especially since it seems that physical communication between patient and facilitator cannot be happening in many "documented" cases of FC. It is not enough for science to provide a few case histories, or even a grand study indicating statistical improbability of chance explaining away one's therapeutic successes. An explanatory mechanism is needed. Until then, FC studies may not be witchcraft, but they cannot be considered much more scientific than, say, testimonials regarding golf aids or weight reducing programs.