Let’s Talk About Facilitated Communication
October 6, 2008 by Do'C 
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Over in the comments of a post at Left Brain/Right Brain, Ms. Clark writes:
Besides that, me, Steve D and Bev met Payton Goddard whose parents facilitate for her. They either have a lot of people fooled at USD, or Payton’s parents are facilitating her to communicate her thoughts.
Admittedly, I really don’t know much about facilitated communication (FC). While a stranger wouldn’t necessarily understand, or communicate with my son effectively (at first), he hasn’t been non-verbal since his second MMR vaccine. With the relative success of modified communication strategies and PECS, we simply haven’t realized a need to investigate FC.
I am curious about it though.
I’ve almost discussed FC here, with someone I consider really beneficial for autistic people (Jypsy).
I also recall reading some of what Amanda has written about it.
And, I’ve read the some of the perspectives of some skeptics, like James Randi, on the subject.
So what to make of this? I’m inclined to agree with Autism Natural Variation blogger, Joseph, when he writes that FC should be subject to the same scientific scrutiny as anything else. (Joseph, I couldn’t remember where I read that, can you supply a link)?
I also think, agreement or disagreement, it’s a topic worthy of discussion, and as my friend Interverbal might put it, “important”.
It would be sad if a divisive issue (FC is really just one example) caused to forget all our points of agreement…. of shared advocacy. However, it would be just as bad, if we suppressed our criticisms, if for the sake of unity, we engaged in groupthink. I have written before why it is so important to express criticism for both ethical and logical reasons.
But, let’s get back to Ms. Clark’s statement:
Besides that, me, Steve D and Bev met Payton Goddard whose parents facilitate for her. They either have a lot of people fooled at USD, or Payton’s parents are facilitating her to communicate her thoughts.
I attended the past two USD autism conferences. I had the privelege of meeting Peyton Goddard and her parents (two wonderful people with a message of love and respect). But, I remember things a little differently. I remember a discussion at some point (I don’t recall if it was part of a panel discussion, or informal discussion outside of the conference, and I don’t recall which conference it was), where Mrs. Goddard conveys skepticism - communicating something to the effect of, “Peyton’s dad has been a successful facilitator, but as for me, I’m not so sure.”
As for me, I’m not so sure at all. Can facillitation with learning to use an augmentative communication device that leads to independent communication work? I would think so. Is ongoing facilitated communication with a facillitator really independent communication? I don’t know.
It there anyone who’d like to take the opportunity to present the science? How about proposed methodologies for conducting the science? Let’s talk.
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Comment by Richard — 7 October, 2008 @ 6:01 am
I have been typing to communicate for seventeen years; both independently and then with FC and then a mixture of both.
I would lookat FC from a different
view point. By offering someone
support to type you are giving
them physical support to enable
that person to communicate
their thoughts and feelings. And
the more one has the opportunity
to communicate the stronger
their communication will become - as with any child/
young adult/person.
Can I and the others communicate - sure we can. Typing to communicate opened
up a whole new world for me;
and I would not change one
minute of one day. For the
first fifteen years of my life
I was labelled: learning disabled,
autistic, retarded. I was denied
an equal education and marganilized by society. Today
I am not that person - today I am
free. I am no longer regarded
as learning disabled today I am
viewed as physically disabled (because I have ataxic cerebral
palsy). I have lived the experience
of ‘disability’ and learned that I
have ‘ability’.
Contributing author “Autism and
The Myth of the Person Alone”.
Comment by Patrick — 7 October, 2008 @ 12:01 pm
I have no science, just opinion.
As long as FC is used as an interim tool while teaching independent communication skills, I have no real objection. But when it is used as a primary method for communication long term, or for legal purposes, then things become less clear.
So, for the question “Is ongoing facillitated communication with a facillitator really independent communication?” I would tend to say no, as one is not independent of the presence of the facilitator.
And along the teaching lines of thought, prompts should be faded as soon as possible. (Where facilitator = a prompt:)
Comment by mike stanton — 7 October, 2008 @ 4:27 pm
This is important - not so much whether FC “works” or not - but whether we can discuss it in the non-partisan spirit of your post. FC reminds me of ABA. Both techniques seem to offer the possibility of some benefit in some circumstances. In both cases extravagent claims are not supported by the evidence but FC is roundly condemned while ABA has retained its credibility. I wonder why.
Comment by isles — 7 October, 2008 @ 10:47 pm
I may not be in full command of the relevant angles, but wouldn’t it be easy to test this by asking the parents to facilitate with their eyes closed? Or is there an interpretive function beyond the mechanical facilitation?
I’m sorry I didn’t bring any science. I’m sure it is out there to be examined.
Comment by Richard — 8 October, 2008 @ 2:46 am
Perhaps people should try to
stand in the shoes of people
that for various reasons are
unable to communicate through
speech. If this was you, or
your child, what would you do?
Would you spend your life in
silence or would you fight
back, and communicate in any
way that you could?
Every child deserves the
opportunity to express themselves through the media
of their choice. No one has
the right to deny them that
opportunity.
Richard
Comment by Patrick — 8 October, 2008 @ 9:19 am
Mike, I think part of the bad reputation FC had gotten was due to its use in legal situations. I am pretty sure there has been at least one US case where there were pretty severe child abuse charges were brought via a facilitator, but other evidence would not support the claims.
Comment by Amanda — 8 October, 2008 @ 11:35 am
There have also been a number of abuse cases in the absence of FC that turned out to be false.
Lucy Blackman, who went from FC to independent typing, said that once she heard a school got closed down because abuse was reported. She tried to report abuse at her own school to get it closed (the abuse wasn’t happening). Her mother suspected she was up to something, and questioned her, and she admitted why she did it.
But of course that flies in the face of the false stereotype saying autistic people can’t lie. (Or confuse imagination or dreams with reality — a problem Sue Rubin describes having.)
There have also been times when abuse was reported through FC and it turned out to be real.
Comment by laurentius-rex — 8 October, 2008 @ 12:23 pm
Well there are a lot of cranks out there who invoke magical thinking and that does proper investigation or taking it seriosly no good at all.
As for dreams confusion, etc, well I could debate all day as to whether there is a reality but I am quite happy welding my dreams to reality or maybe it is the other way about welding reality to my dreams.
If you want to read some real tosh, read the psychoanalytical school of film thery
Comment by Joseph — 8 October, 2008 @ 1:31 pm
Elsewhere I argued that FC has been completely discredited, and if there’s something that people are calling FC that actually works, it should be called something else, not FC.
I don’t necessarily object to autistic people being taught or helped to get used to a keyboard. What I think is objectionable is suggesting that we should all just assume the autistic person is the one communicating, when the facilitator is the one forcing the autistic person to press the keys.
But whether there are helpful techniques to get someone on the path to communicating their own thoughts with a keyboard, this is something for science to answer. It’s not sufficient to point to autistic people who are now independent communicators who once weren’t. As much as I might admire these autistic persons, standards of ethics and science don’t go out the window.
It’s unfortunate, actually, that keyboard use gets associated with FC, a completely discredited form of woo. This obviously can’t be good for autistics.
Comment by Steve D — 8 October, 2008 @ 3:24 pm
Great discussion, James.
And great point, Joseph, that since FC has been discredited, we need not assume that communication by typing on a keyboard is not feasible for all autistics.
Richard - your stated experience very closely mirrors that of Peyton - the woman being discussed here that we met at USD.
An important distinction with Peyton is: she types by herself. When we were preparing for our “breakout” presentation, she and her mother were sitting in the front row. While Peyton typed, her mother was writing down the words, which she then brought up on stage and handed to Estee, explaining that Peyton wrote the statement for Estee and Bev. It said (in Peyton’s trademark atypical/poetic style of wording):
“Queer is equated to fear and pity. It should = Love.”
This was written in response to my portion of the presentation, in which I described the importance of acceptance in the context of Katie McCarron - a topic that caused Peyton to get up and dash out of the room.
Two points: Peyton is not an FC communicator, and thank goodness she has learned a mode of talking to us in her beautiful voice.
Comment by Joel Smith — 8 October, 2008 @ 5:14 pm
What amazes me on this is that someone who *doesn’t* use FC anymore who used to be a user, who talks about the fact that they *were* communicating, and explains *why* is completely ignored. Yet another way of marginalizing certain people.
Several former FC users have talked about using FC. It is definitely not all bunk.
(I’m not an FC user, but I know several people who use it now or used it in the past)
Comment by Chris — 8 October, 2008 @ 7:02 pm
One of the problems that FC has is that neither the people who say it’s been exploded nor most of the people who like it have ever actually read any of the basic texts that say what it is. Hands up anybody who’s actually dipped into Rosemary Crossley’s Facilitated Communication Training, or even her Speechless.
Another problem, of course, is that people like Joseph and Steve D run an effective catch-22; while people like Peyton or Richard are facilitated, that’s unreliable and proves nothing, while when they reach the stage of independent typing then that’s not facilitated communication and thus still proves nothing. We can’t win - and, more to the point, Steve and Joseph are ensuring that the people who are now what Peyton was then won’t get the opportunity to become what Peyton is now.
Comment by Do'C — 8 October, 2008 @ 10:24 pm
Hi Steve.
I didn’t know that. I recall someone facilitating. I’ll admit, my recall just ain’t what it used to be, and I could very well be 100% in the wrong about this.
Here’s an interesting article from February of this year. It seems to indicate that Peyton uses FC, but it is several months old. Also, it doesn’t express any skepticism on Mom’s part. Perhaps the statement I don’t necessarily clearly recall was from 2007.
Quietly Changing Worrisome World:’ Questions for Peyton Goddard
Comment by Richard — 9 October, 2008 @ 12:54 am
Just to clarify a point I typed
independently, half a page to a
page before I took hold of my
mother’s finger one day for
support - at the age of sixteen.
I was/am able to speak words
before, as or after I type them.
This however slows me down
and interfers with my thought
process.
That support allowed me to type
for longer periods, and at a
faster speed, which enabled me to
keep up with my thoughts. Over
the years my hands became stronger, and my arms. I am
said to be ‘a miracle’ in that I
was never expected to walk (ataxic cerebral palsy). I had
never heard of FC when I began
to type.
Being able to communicate
through typing allowed me
access to mainstream College (Advanced Level)
at the age of nineteen on the merit of a poem that I had
written at the age of 15. I
was given Awards for outstanding
commitment and perseverence against adversity. I was stated
to be the brightest student that
a Lecturer had ever taught in
his teaching career. If, someone
had not told me to try a small
device called a canon communicator I may never have
obtained the level of communication that I have today.
I have Mearles/Irlen and now
wear tinted lenses. Because I was
able to type I was able to state
that words jumped away/out of
sight when I read (glare pattening)and I saw a Professor who
confirmed I had M/I. I was able
to choose a tinted lenses for a
pair of glasses using the canon
and for the first time the world
came into focus. The environment calmed and I was
able to gradually over a period
of time re-adjust my world - not
a cure but a tremendous help.
So people do you think that I
have benefited from being able
to sit at a type writer and type?
I can type independently. But
my language which is something
different is part of who I am and
no one can ever take that away
from me.
My mother taught me to read
and write as a small child; but actually
I began to read at the age of
two - I would look at the pictures
in books and match the words
and I can still remember some of
those words and pictures today.
Each child will have had different
experiences. I was lucky in that
my mother took no notice of the
powers that be - she worked on
a movement program with me
day in day out for years. Today
I am able to walk on par with
other people but still need a
level of support (someone to hold my arm) when walking
outside. I have since developed
an eye condition and I am
now partially sighted (only my
right eye affected) and I have
spent my time writing articles/chapter to a book/ etc.
trying to help people understand
that people with the label of
autism have the potential to
develop.
The magic is in being able to
communicate.
Comment by chaoticidealism — 9 October, 2008 @ 5:22 am
Isn’t it easy to test?
Just ask a question that the person using FC knows, and their facilitator doesn’t.
If you get the right answer, then the communication is genuine.
If you had to use FC for communication, and had to be sure that the ideas came from the user & not the facilitator, all you’d have to do is have the facilitator look away while the user read printed communication, or else wear earplugs while he listened to questions.
These tests have been done, incidentally–confirming that at least in some people, especially those with movement disorders, FC does work. (And many FC users go on to independent communication.)
The danger of getting messages from the wrong person does exist, though, and such occurrences must be watched for quite intently.
Comment by Joseph — 9 October, 2008 @ 7:17 am
There are few documented cases of FC where facilitated communication seems to be occurring. This is extremely rare. The vast majority of tests show the facilitator is doing the communication.
The existence of these instances doesn’t validate FC at all. First of all, there was never any sound theoretical foundation for FC. What was the reason to suspect that someone who can’t use their hands and fingers to type would be able to do so if someone else controlled their hand; and to do so in an adult-like manner, largely without typos or grammatic mistakes?
It’s like inventing Astrology and hoping that it works.
From the start it should’ve been clear that FC didn’t make any sense. Nothing takes away from the fact that FC was essentially a fraud, that parents were deceived, and that words were put in the mouths of children.
Does the Hannah Poling case prove vaccines cause autism? No. Same thing here. It’s possible some autistic persons do communicate with a keyboard with some assistance, but this is not the fundamental hypothesis of FC. This is not what the inventor of FC was going for.
Chris makes the argument that independent communicators could not have gotten where they are if not for FC. And the evidence of this is what? Should I now also uncritically accept claims by parents to the effect that their kids would not be where they are if not for ABA, or the GFCG diet, and so forth? I’m sorry, you might be a fellow autistic, but that doesn’t mean I’ll apply a double-standard for you now.
Comment by Richard — 9 October, 2008 @ 8:36 am
Actually as far as I am aware
you will find that there is a shift
in current thought regarding
FC in some quarters. “Autism and the Myth of the Person Alone” is being used at University level. The aim
of facilitated communication was
to allow people with the potential
to develop language to do so and in this regard it certainly has been a success. Many young people have been able to go on to University world wide.
I personally put a University degree on hold because I thought
it was more important to write
the chapter for the book. The evidence is there.
The idea behind FC is certainly
not that a facilitator would move
a person’s hand - the support
offered would depend very much
upon the individual - some people needing more support
than others.
In ’special education’ children
are supported in all areas -
dressing, eating, writing, painting, and gradually the help
is faded back until the child is
able to do the action for themselves - this is the same idea as in typing to communicate.
Facilitated communication actually makes a lot of sense
to me because I have been in
a place where no one would
want to be - no way to
communicate - drowning in fear
trying to speak - denied speech therapy on grounds of disability.
Denied physiotherapy on grounds of disability. Denied an
education on grounds of disability. Marganilized on grounds of disability. I am
used to double standards I have
had to deal with them for 30 years of my life.
Comment by jypsy — 9 October, 2008 @ 12:19 pm
Folks… I’m really to under the weather to join in here , I know there are studies but I’m not together enough to remember or find them, but….
there are videos of Alex typing; “assisted” and “independently”. Maybe a starting point would be for people to define what is in these videos. You’d have to watch more than one, some are in school, some are homework, they range from grade 1-6. There may be more examples in our many more videos at YouTube & Vimeo. You’ll likely need to ask questions too.
http://www.youtube.com/watch?v=S7ECdtkfROU
http://www.youtube.com/watch?v=jUJSowwqnmY
http://www.youtube.com/watch?v=UE8pxUE-50U
http://www.youtube.com/watch?v=02qTIWxyiNk
http://www.youtube.com/watch?v=7-Zi2NTffec
http://www.youtube.com/watch?v=nTBmP90EtcQ
http://www.youtube.com/watch?v=Mkw98CYU1N8
http://www.youtube.com/watch?v=8NtAIe9c7xg
http://www.youtube.com/watch?v=Kt7HxZh1TQQ
http://www.youtube.com/watch?v=hX0zCtL0OqE
http://www.youtube.com/watch?v=RFEilLUCXNw
http://vimeo.com/716859
http://vimeo.com/733689
I like Joseph’s point - “Elsewhere I argued that FC has been completely discredited, and if there’s something that people are calling FC that actually works, it should be called something else, not FC.” The same way I’ve argued there’s a part of the autism community that I wish would leave autism alone and run with a “cure mercury poisoning” campaign.
The “Social Stories” I did with Alex, by definition, weren’t Social Stories. I’m not convinced the FC we did, by definition, was FC either. Alex had early, independent literacy skills:
http://www.youtube.com/watch?v=cA1OvYM44A8
http://www.youtube.com/watch?v=WcRzsUMA6e0
Comment by chris — 9 October, 2008 @ 2:04 pm
I agree that the use of an FC can appear to be somewhat skeptical to onlookers. Without the proper insights into any autistic person it may simply seem as though the FC is doing all of the communication and not acting as a true facilitator. But I think that even if the facilitators take some liberties at first, they are still guiding that person they are assisting and showing them a new path. As time passes the person may be able to do more and more on their own and open up new worlds that they may have never seen without the early help from an FC.
Comment by Prometheus — 9 October, 2008 @ 3:35 pm
I have a rather mixed opinion of FC and a number of concerns. On the one hand, a number of people have come forward to say that FC helped them to communicate and that it worked well (or at least better than any other resource they had at the time) for them.
On the other hand, there have been a number of rather spectacular demonstrations of how FC can reflect nothing more than the conscious of unconscious intent of the facilitator.
In at least one of the FC sessions I have witnessed, the facilitator was moving the person’s hand while that person was looking away from the “communication board”. Several symbols were “faciliated” while the person being helped was clearly not looking at the board.
Now, this could have been a person with excellent spatial memory and above-average awareness of their position in space.
On the other hand, it is also possible that the facilitator was moving the person’s hand in much the same way the the planchet of a Ouija board appears to “move” all by itself.
The problem with facilitated communication, as I see it, is that it is so difficult to tell if the facilitator is the one communicating - consciously or unconsciously.
To be sure, you can test the communication by asking questions the person knows but the facilitator doesn’t, but there are lots of times when that isn’t possible (for one thing, you can’t do that test if YOU don’t know the answer).
Given the myriad ways that FC can be contaminated by deliberate or inadvertent input from the facilitator, I think that people are justified in not having much faith in it. The more “support” that the facilitator has to use, the more likely - in my opinion - that the communication will be contaminated.
Of course, there are certain to be lots of people who were/are able to communicate effectively using FC. This does not eliminate the fact that there is no reliable way to know who is doing the communicating in FC. The facilitator themself may not even be aware of when they are communicating and when the person they are assisting is.
For day-to-day communication, this is probably not much of a concern. The facilitator might “facilitate” the choice of a red shirt when the person wanted the blue one, or choose chicken when they wanted pasta, but those sort of contaminated communications are not going to lead to life-altering issues.
However, to make more significant choices or communicate messages of great impact (e.g. “My teacher is molesting me.” or “I want to live on a goat-farming commune.”), I think it would be very dangerous to completely trust those type of communications to FC.
Prometheus
Comment by Richard — 9 October, 2008 @ 5:41 pm
Sorry - lost the end of the
sentence -should have read:
Does it matter what typing to
communicate is called -
supported typing, assisted typing,
fc???
Comment by Interverbal — 11 October, 2008 @ 10:31 am
Do’C asks
“Is there anyone who’d like to take the opportunity to present the science? How about proposed methodologies for conducting the science? Let’s talk.”
I will offer as objective a review as possible. The problem here is that much of the research involving FC is qualitative as opposed to quantitative. Qualitative studies answer questions concerning subjective issues. What where the character qualities shared by 5 great historical leaders? What are the affective qualities of chimpanzee society? How does facilitated communication affect autistic self-image?
Contrast this to quantitative studies which focus on empirical questions. Is there a difference between the results obtained for a group of autistic children using the GF/CF diet and a control group? To what extent does the introduction of environmental enrichment toys affect typically developing children’s performance on State Math core tests? What is the performance of autistic persons who use FC in shared, blinded, and misinformation trials?
Thus far the advocates of FC have chosen mostly to conduct qualitative studies. That is their choice to make, but this type of study cannot answer questions of authenticity.
As I have said before:
“In the quantitative realm, in general, as methodology shows increased control results tend to worsen. Biklen et al. (1995) argue that negative results tend to be associated with higher control, and that positive results tend to originate in naturalistic settings.”
As to the research that showed some support:
-Simon, Toll, & Whitehair (1994) which involved 7 students were reported prior to the study to be communicating via facilitation at levels far above what was previously thought possible given their level of intellectual ability. The authors found that 1 child out of the 7 could answer correctly on 2 of the trials.
-Montee, Miltenberger, & Wittrock (1995) assessed FC for 7 adults in naturalistic conditions. Again, only 1 of the 7 subjects had any correct answers in the unknown or false conditions. The evidence suggested that facilitator control was active in the other conditions.
-Cardinal, Hanson, & Wakeham, (1996) found some positive results. The authors used 48 student and 3,800 trials. They randomly selected a word, presented to the student; the student had to type with the aid of their naïve facilitator.
-Calculator and Singer (1992) have a letter to the editor of Topics in Language Disorders.
-Howlin (1997) looked at 45 trials of FC involving over 350 participants. The data validated communication by 6% of the participants. The authors showed that over 90% of the cases were influenced by the facilitator.
For negative studies:
-Mostert (2001) is large review that shows mostly negative results.
-Beck & Pirovano (1996)
-Eberlin, McConnachie, Ibel, & Volpe (1993)
-Regal, Rooney, & Wandas (1994)
-Vasquez (1995) involved a naturalistic setting. Among the 3 autistic children who participated in the study, no valid results were found in the facilitator blinded conditions.
Also, I have refused to include Weiss et al. (1996) which found positive results, but which is so methodologically poor as to not merit inclusion as a proof. Also Sheehan and company said some really remarkable things about statistical significance that caused me to dis-include them from this list.
As I have said before:
The data do not support the criticism of the negative findings offered by Biklen et al. that more naturalistic settings tend to produce better results. In fact the available data contradict this (Montee, Miltenberger, & Wittrock, 1995; Vasquez, 1995). No data are available to assess the claim that better results are obtained when the researchers attempt to reassure the participant. There is some data to validate the idea that FC users will improve if given time to practice the testing protocol (Cardinal, Hanson, & Wakeham, 1996). However, Cardinal et al. didn’t tell us how many answers were right and wrong in each condition. They merely show that over time the FC user seems to be answering more correctly. Further, Cardinal et al. don’t assess for facilitator influence. However to answer Cardinal et al. a group design where individuals are randomly sorted in a short and long testing group has yet to be done, but is feasible. Such a design could help answer the question.
Please be aware that my comments are limited strictly to autism. I have not looked at FC outside of this context and I have no wish to comment on that which I have not looked at. I would argue that we in the Hub should treat FC as we would any other unproven methodology. Which is to say that we give it a fair chance, that we do not reject FC out of hand, but also that we treat it with great caution and skepticism until supportive data are forthcoming. And at this time, the quality quantitative research is largely against FC.
Our Hub community is broad in its opinion on this issue, but I believe we share a sense of fair play. We can advocate that FC supporters (some of whom are us after all) push for better quantitative studies that are acceptable for both advocates and skeptics. We can both acknowledge without hesitation that there are individual FC users who were not independent typists, who became so over time and then shared their experiences with us and we can criticize or disagree if some of us try to make illogical extensions using this fact. I don’t want to see FC become Hub approved quackery and it easily could, any legitimate method can. I would argue this is already the case for Autcom, but that is another story for another time.
Comment by Richard — 12 October, 2008 @ 1:55 am
I would have thought the evidence
would have been the number of
people that are now in higher
education; living independent
lives. No a few studies where
the goal posts were moved every
time the requirements were met.
But obviously that is not the
case. How easy it is to turn
a blind eye to the evidence one
does not wish to see.
I wonder how many children would have been doing all of
the above as adults if science
had not stood in their way. How
many of them are now condemned to lives in silence
shut away in homes because no
one believed in their ability; where funding was taken away
because of prejudice and
intolerence; where communication aids were taken
away due to ignorance.
Comment by Richard — 12 October, 2008 @ 5:21 am
Prometheus, meant to get back
to you on this earlier:
‘Now, this could have been a person with excellent spatial memory and above-average awareness of their position in space. ‘
A few thoughts; one being yes
it is quite easy to remember the
layout of a keyboard - regular touch typists do not look at the
keyboard. But there has been
a recent study in the UK that
has recorded the eye movement
of the people that type to
communicate and it has been
proven that the typists looked
at the keys before they touched
them; I am not sure if this
study has been released as yet.
I think many of the above studies
are now quite dated.
Comment by Do'C — 12 October, 2008 @ 9:26 am
I think that might make good evidence. Are there any scientific references to that number (as a result of FC)?
I don’t see this being descriptive of Howlin (1997), cited by Interverbal, which apparently reviewed 45 FC trials, but I haven’t read the paper, so I could be wrong.
With all due respect, please feel free to present some actual evidence to support opinion.
If science has “stood in the way”, then perhaps too many, but for kids who did not encounter such barriers (if such kids, now adults using FC exist), I would still be curious about a retrospective scientific look at the role of FC.
I don’t know how many, but I would agree that this would be a real problem. However, it seems to be a non-scientific position (see Interverbal’s statment about not rejecting FC out of hand - a statement with which I agree). I support presuming competence and capability for individuals, and affording all manner of opportunity when it comes to communication aids. I also think it’s not a mutually exclusive proposition to scientifically evalutate communication methods.
Comment by Interverbal — 12 October, 2008 @ 11:14 am
I can think of no improvements over Do’Cs questions and comments, but let me say this.
The ball (burden of proof) is in the FC advocates court. It is not our job to accept inadequate proofs, it is your job to provide them. Unfortunately the biggest and most influential US advocate (Biklen) seems to have abondaned this line of inquiry.
Comment by Richard — 12 October, 2008 @ 12:50 pm
*Comment by Do’C — 12 October, 2008 @ 9:26 am
I think that might make good evidence. Are there any scientific references to that number (as a result of FC)?
*Do’C
*I know/of know of the individuals not the scientific data. People are people I
accept them for who they are.
I don’t see this being descriptive of Howlin (1997), cited by Interverbal, which apparently reviewed 45 FC trials, but I haven’t read the paper, so I could be wrong.
*No this would have been a study/studies from the USA.
With all due respect, please feel free to present some actual evidence to support opinion.
*Shall we say based on experience; not necessarily of FC but of how people under the umbrella are subjected to discriminary practice.
If science has “stood in the way”, then perhaps too many, but for kids who did not encounter such barriers (if such kids, now adults using FC exist), I would still be curious about a retrospective scientific look at the role of FC.
*I think these days it a case of ‘every man for themselves’ much as in the first world war in no man’s land; the youngsters are out there fighting every day to communicate. And for each of us that speaks out the children of today and future generations have a hope of gaining communication. I understand there is a shift in opinion in the USA towards acceptance of FC by younger scientists because of the high profile cases.
I don’t know how many, but I would agree that this would be a real problem. However, it seems to be a non-scientific position (see Interverbal’s statment about not rejecting FC out of hand - a statement with which I agree). I support presuming competence and capability for individuals, and affording all manner of opportunity when it comes to communication aids. I also think it’s not a mutually exclusive proposition to scientifically evalutate communication methods.
*I am more a humanitarian than scientist; science cannot prove to me what I already know for fact having been there, worn the t-shirt, and over come the odds so to speak. One can only be true to oneself. One cannot reject what one knows to be truth in favour of science which presumes to know. It was once thought that the world was flat and if one walked to the edge one would drop off and that dragons roamed the earth. Science continually proves itself wrong. Unfortunately, as I have stated, by the time the facts are proven it will be too late for so many children who could have communicated.
Comment by Interverbal — 12 October, 2008 @ 5:47 pm
Richard,
I am going to comment directly on something you wrote. But before I do I would like to know what studies specifically shifted the goal posts? Also, if there are many younger scientists who now accept FC, what quantitative research have they generated…. I can’t seem to find any beyond what I cited.
“It was once thought that the world was flat and if one walked to the edge one would drop off and that dragons roamed the earth. Science continually proves itself wrong. Unfortunately, as I have stated, by the time the facts are proven it will be too late for so many children who could have communicated.”
This is not quite correct, or at least it is too simplistic. Overarching theories do change over time. This is also true for research findings, but to a lesser extent. There is no logical reason to ignore current findings because it just might…. Be possible the research will change in the future. On the other hand there is always room for more research.
However, if you are willing to pursue additional research then you have to first admit that the theory or belief could be wrong. You can’t do real science unless you are willing to look stupid. If there has to be a right answer, then it is no longer science, it faith.
My recommendation to Richard and the FC advocates is as follows:
1. Recognize that there is no such thing in science as the “correct answer”.
2.Recognize that if nothing except a certain result will be accepted as “true”, then one is using pseudo-science.
3. Recognize that anti-science occurs when we abandon the scientific method for testimonials in proving the generalization of a method.
4. Recognize that if advocates choose to employ numbers 2 and 3, then their movement will lose the support of many science and skepticism types who might have otherwise supported the movement.
5. Consider which of the first 3 paths best reflects the values of the FC movement.
Comment by Richard — 13 October, 2008 @ 2:10 am
Yes, I thought you might ask; I expect the information would be available but I was not involved in any of the studies so I am unable to give any further information. As to the younger scientists you will have to wait for this to be published. I have it on good authority it is current thought.
So you do not think that for sections of society to state that FC does not work is too simplistic?
I personally would not involve myself in science and I would not put vulnerable child/young adults through what they have been subjected to - it is inhumane. A child/young adult struggling to communicate - my thoughts would be: How many children in mainstream go in to a test situation and are unable to recall information due to stress. I know one person whose mind went blank in an exam and they were unable to write answers to questions that they knew they knew the answers to. Why would this be any different for children/young adults on the spectrum? How many of you have failed to answer a question where you knew the answer in a test situation? With a mainstream child if they are not achieving academically they would be given extra help; if you are unlucky enough to be under the umbrella of disability you are penalized.The rules change when one has a disability label. ‘Social justice’ becomes empty words.
The system failed me over a period of nineteen years - I believe in my own ability - it is
all I ever had. Faith in myself.
Science never came into the
equation.
Comment by jypsy — 13 October, 2008 @ 7:55 am
“I personally would not involve myself in science and I would not put vulnerable child/young adults through what they have been subjected to - it is inhumane. A child/young adult struggling to communicate - my thoughts would be: How many children in mainstream go in to a test situation and are unable to recall information due to stress. I know one person whose mind went blank in an exam and they were unable to write answers to questions that they knew they knew the answers to. Why would this be any different for children/young adults on the spectrum? How many of you have failed to answer a question where you knew the answer in a test situation?”
I’m pretty sure all of us have experienced this to some extent. I know I have (more so in the last 15 or so years due to MS & seizure related issues) and I know my kids, both the ASD & regular ones have. However, we’ve all been in test situations. We’ve all aced a few and flunked a few. Alex hated tests and exams and it’s likely the biggest reason he chose not to go on to any post secondary education.
However, I do believe he could have passed tests when he was an “FC user” or “supported typer” or whatever. It’s likely he could have done it with a facilitator other than his regular ones (his TA & I). There is video of him typing with his teacher, he also typed with his brother, with substitute TAs when his was out sick, with others that my memory doesn’t recall.
I would have allowed him to be a test subject back then.
Richard thinks it’s wrong to question *anyone’s* FC but I believe it’s far too open to abuse and I will only absolutely vouch for Alex’s communication. On the other hand, for those who discredit *all* assisted typing, my question (linked to in the body of this post) remains: “Was All of Alex’s communication just that [“accepting something as real without evidence that it is”] until the day he shook off our hand and typed independently? At that point, does this validate his past communication or only what he types from that point on? Does the fact that for the next 6 years he couldn’t type without someone in the same room with him (even if they had their back turned and were paying him no attention at all) thereby making him somehow “emotionally” dependent though not “physically” dependent invalidate those 6 years of communication too?”
Interestingly, no one has ever answered that (and I’m not expecting folks here to)
FC has a lot in common with quackery and a lot in common with chicken soup. I cannot support the anti-science stance of some FC supporters. I also cannot tell the parent of a non verbal child not to hand their child a letterboard, take their child’s hand, ask a simple question and see what happens.
Comment by Richard — 13 October, 2008 @ 2:52 pm
Jypsy,
I think everyone deserves the opportunity to communicate. How can one decide which child should be given the opportunity and which child should not. If one believes in equality then everyone is of equal status; the child that is non-verbal is of equal status to the child that is verbal. They both deserve equal opportunities; that includes an equal education and equal opportunies socially and equal opportunities in communication.
Because I have the advantage of having been able to speak since I was 10 months I know the difficulties; also of being able to type independently before I typed with support. As a child/young adult I was also able to read books out loud - my teacher said I could read anything when I began school - thanks to the efforts of my mother. I was able to write but I was never able to string two sentences together verbally. I am in a situation where I can be confident and give an informed opinion. Which is different from someone who views the situation from the perspective of an observer. I feel it is important for those of us that are able to be able to do so to speak out about what we perceive as social injustice and also our experiences.
If I said yes it is fine for me to type but not a particular child because he cannot speak more than a few words or that child because his co-ordination is poor it would make me a hypocrite because I have been in those situations and I know that one can work through the difficulties. I do not sit in judgement on people because as a child/young adult society sat in judgement on me.And it is not a very nice experience to be side-lined. I worked out who I was; what I stood for and what I believed in; like an ordinary person I developed an indentity and I am comfortable with whom I am - most days. Other days I tell myself to try harder. I gave up on my speech at the age of sixteen - I did not wish to go through life with no way of communicating. I was not particularly worried about taking exams, but I had a thirst for ‘knowledge’; I was really angry as a small child that I was denied an equal education on grounds of disability.
So we all have our reasons for the way we feel; we all have different experiences; and we all have different aims in life; we are all different people - all we share is a ‘disability label’. I refuse to be identified by a ‘disability label’. I crushed everything that I perceived as ‘autism’ into the ground. It is not who I am.
I think it is wrong to deny a child the opportunity to communicate; early intervention with a structured language programe would be the way I would go.
Comment by Interverbal — 13 October, 2008 @ 5:56 pm
Hi Richard,
“Yes, I thought you might ask; I expect the information would be available but I was not involved in any of the studies so I am unable to give any further information.”
Would you agree then that your earlier statement about FC research shifting goal posts is inapplicable (to your knowledge) concerning the research I cited?
“As to the younger scientists you will have to wait for this to be published. I have it on good authority it is current thought.”
I am willing to be patient, but not much beyond a year. If there really is a wave of new researchers interested in the quantitative realm then we should see at least 2-4 examples very soon, certainly within a year. FC’s star has again been in the ascendant for several years now after all.
However, if by “research” what you actually mean is qualitative research e.g. (How does FC affect the family dynamic etc…) then there is already a gaggle of FC research. But this isn’t new, the FC folks made the shift to primarily qualitative research some time ago. But qualitative research cannot answer questions on authenticity. This style of research isn’t designed to.
“So you do not think that for sections of society to state that FC does not work is too simplistic?”
Absolutely, it just takes a single counter example to blow such a statement to pieces and I can think of several such examples. But I would support the following statements:
1. There was a high degree of inauthentic communication shown in the research.
2. There was a high degree of facilitator influence shown in the research.
3. The response to address concerns via numbers 1 and 2 is currently inadequate from the FC community.
4. FC deservers a high degree of caution and skepticism at the moment.
Re: testing
I teach special education. I have also helped teach at the University level. I have seen test anxiety in both situations. But I have never seen or heard of an exemption from testing due to anxiety. What I have seen are approaches to alleviate the anxiety e.g. (More time, quite room, relaxation techniques, familiar environment).
At least one of these techniques has been suggested for FC users (naturalistic environment) but failed to produce affirmative outcomes in the research. I discussed this in my first post.
Comment by Richard — 14 October, 2008 @ 2:26 am
Hi Interverbal,
I am sorry I do not know which studies the remark referred to in the USA.
I do not know what type of research only what I stated previously.
Yes but if it is possible for people’s memories to go ‘blank’ in an exam then the same could happen to people on the spectrum.
On the first occasion I spoke directly to a member of staff at school, at the age of nineteen, and typed a sentence, I was shaking from head to foot. I could hardly stand I was so nervous (at this point I had been typing for three years). On another occasion at an evening function one of the students was looking for me and I went over to speak to him; I found him terrified standing with his back against a wall. This guy had always been confident, chatty. I typed and asked him if he was frightened, he replied: ‘Not as frightend as you Richard’ - I realised I was shaking.
I am wondering if you have ever have had the experience of being so frightened that you freeze; people who have not had good communication from an early age can have all types of Post Traumatic Stress and given situations can trigger off different levels of panic. It is not quite as straight forward as having a safe environment.
I do not truly know if one can ever recover from the experience of not being able to communicate for so many years.
Comment by jypsy — 14 October, 2008 @ 4:02 am
Richard,
Please stop changing my words. I said “Richard thinks it’s wrong to question *anyone’s* FC but I believe it’s far too open to abuse and I will only absolutely vouch for Alex’s communication”
I said nothing about “denying” anyone communication except this comment to the opposite: “I also cannot tell the parent of a non verbal child not to hand their child a letterboard, take their child’s hand, ask a simple question and see what happens”. If you think I don’t also believe “everyone deserves the opportunity to communicate.” you are reading me completely wrong. If you think that I will vouch for everyone’s communication, written, typed, spoken or otherwise as being truthful and being their own, think again. I will only vouch for what I *know* and I’m not that omnipotent.
Comment by Richard — 14 October, 2008 @ 5:09 am
Jypsy,
I am afraid you have lost me; can
you clarify where you feel I have
‘changed your words’. I took on
board what you stated regarding
Alex and your other comments.
I did not feel it was necessary to
comment on your view point other than what I stated.
Richard
Comment by Richard — 14 October, 2008 @ 5:18 am
Jypsy,
I do not think I have ever stated
that: ‘it’s wrong to question *anyone’s* FC’. I have not met
everyone that types with FC -
although I have witnessed one or
two awful positioning in relationship to the board and the person; but then again that does not mean the person is comfortable with it - just unable
to express the fact.
The concept of
FC is an entirely different issue. If I am mistaken in this perhaps you could show me where I have typed that and I will see if I can
rectify it.
Richard
Comment by Richard — 14 October, 2008 @ 5:51 am
Jypsy,
Forget to say ‘thanks’.
Richard
Comment by Richard — 14 October, 2008 @ 6:23 am
I think it would be fair comment to state that we all take people on trust in our relationships otherwise they would never work; in an equal society one has to extend that trust to everyone. Otherwise it would become an unequal. If one believes in ‘absolute equality’ one cannot have an unequal society.
We learn through experience the people that we can trust and those who we should not trust; we know that some people lie and we know there are people whose integrity is beyond reproach.
The structure of society is a very
complex issue. What one person
perceives as ‘a truth’ another person would perceive as ‘an untruth’. One could question if
‘absolute truth’ actually exists.
Richard
Comment by Richard — 14 October, 2008 @ 6:27 am
Sorry everyone that should have
read ‘become an unequal society’;
changed the structure of the
sentence and missed off the word
’society’.
Comment by jypsy — 14 October, 2008 @ 7:32 am
Richard,
A private email has been sent. I will not quote here what you said on a private list.
Comment by jypsy — 14 October, 2008 @ 7:36 am
“I think it would be fair comment to state that we all take people on trust in our relationships”
I do. To a fault. I am incredibly naive and always give people the benefit of the doubt and believe what they tell me is the truth.
However, I believe I have every right to question everything, there is very little I know with certainty and less I would vouch for.
Comment by Richard — 14 October, 2008 @ 7:44 am
Gypsy,
Perhaps you could clarify on the
private list and then I will know
what you are referring to. As I
stated I would then be able to
rectify it if need be.
Comment by Richard — 14 October, 2008 @ 7:52 am
Gypsy,
I used to be naive at one level -
easy going, placing my trust in a system that did not work - but
having been through ’segregated education’ one wises up eventually - maybe in hind sight;
once one is out of the system one
learns more about it than one did
when one was in it.
Everyone has the right to question; the more we question
the greater our understanding.
Comment by Richard — 14 October, 2008 @ 8:17 am
Jypsy and I have been able to
clarify the position.
I will clarify
that I believe in social justice and I do not feel that social justice is being met in denying children/young adults access to communication aids on the grounds that another child/young adult at another time failed a ‘test situation’. This would be on par with denying all children an education because in a ‘test situation’ some children failed to meet the required standards.
Comment by Curious George — 31 December, 2008 @ 7:02 am
Hey,
Very curious about schools that use FC. Can you please list schools that you know practice FC.
Comment by Dr.T — 11 March, 2009 @ 7:11 pm
WOw! FC really is the type of topic that puts people at such varying degrees that arguments have ensued as well as strong opposition by the scientific community and counterarguments by proponents of FC. Unfortunately the scientific community has not been able to provide much support of the negatives of FC; while advocates too have not been able to prove its merits.
The issue of FC will probably continue to be an issue of debate until someone can prove its beneficial or dangerous premise. Until then, we have both sides fighting for a group of children who typically suffer from autism.
I am currently doing research (a dissertation) on FC and as far as I can see, it is a technique motivated by emotional and hopeful desires by proponents of FC. It is torn down by researchers who understand this emotional ploy against parents. It is also refuted by those who are on the outside and who are not emotionally attached to a child with autism or who is nonverbal. They are, most times, more capable of weighing the pros and cons of this technique and objectively researching its existence.
If most people understood the foundation as well as the history of FC would they then take a different view. Right now proponents are in support of the technique because they do not understand its existence. I would recommend a book titled: Facilitated Communication:the clinical and social phenomenon by Howard Shane.
This book is complied by several authors. I would encourage you to read chapter 1, 3, 6, and 7. Very informative. I would also encourage you to google “Children’s Hospital in Boston” and type in the search bar “Facilitated Communication.”
The only school in the U.S. I believe that currently teaches FC is Syracuse University where D. Biklen is the Director. I would urge readers of Biklen to keep an open mind and watch our for emotional banter and verbosity, which he uses often to pull in his “prey,” that is, potential supporters of FC.
Facilitated communication was a sort of “wonder drug” that came out during the early 1990’s when autism was gaining more attention and becoming a prevelant diagnosis. If you had a child who had autism (characterized by an inability to verbalize in some cases; an inability to understand abstract/complex ideas; an inability to function normally during early development, usually around 2-3; an inability to understand the intentions of others; exhibiting pre-school-like behavior by age 6, or not being able to become independent, etc) I’m sure you would grab on to that “wonder drug” in hope of unlocking the mystery of your child’s diagnosis. However, in doing so, many invite harm to themselves as well as their children.
Unfortunately FC has been riddled with false sexual abuse allegations against parents that have cost a dozen families in Australia (the home of FC’s development) money, time, and patience. In other cases, it has caused parents their positive reputation and their sacred parent-child bond.
Anyone considering using FC, please carefully and objectively weigh the pros and cons. It is only for the benefit of you and your child.
I wish you well