Both facilitated communication (FC) and Rapid Prompting Method (RPM) while different in practice, are based in a presumption of competence and both are often a bridge to the ideal goal of independent communication. There are those who may not be able to achieve full independence because of physical challenges. It bears repeating, however that the eventual goal for all who are physically able to, is independence. And yet both methods are criticized. In fact, no matter what the initial method used to learn to type by non-speaking, Autistic people who have gone on to type independently, people like Carly Fleischmann, Tito Mukhopadhyay, Sue Rubin, Jamie Burke, Ido Kedar and so many others, there are those who continue to question the authorship of their words. Even though no one touches them as they type. Even though there is no physical contact of any kind as they write. Even though they all talk about the issues they must contend with on a daily basis, things that are specific to them and the challenges they face with a mind and body that are often not in sync.
In the case of FC there are a number of people, now independent, who began typing to communicate, but for physical reasons need the help of another person to provide resistance or to help with physical challenges. As with Applied Behavior Analysis (ABA) where a child is given hand over hand prompts that are hoped to be eventually faded, so it is with FC. However FC is continually attacked for using, often less, physical prompts than ABA practitioners use. Some people like Barb Rentenbach, Peyton Goddard, Jennifer Seybert and Tracy Thresher are now typing with a finger placed on their shoulder or the middle of their back. If one goes back to how they began to type, this shows enormous progress. All of them are intent on becoming fully independent and work extremely hard in trying to reach this goal. Yet, it is interesting to note that few people object or question ABA’s use of hand over hand prompts. What is good for one, seems to not be good for all. Why is that?
Carly Fleischmann who types independently wrote, “I don’t have a hand up my butt like a puppet…” Despite her words, if you google “Carly Fleischmann” the second search term that comes up after “Carly Fleischmann blog” is “Carly Fleischmann fake”. Oddly, when entering “Stephen Hawking” into google, the search terms are “Stephen Hawking quotes” and “Stephen Hawking black holes”. Why is it that Carly Fleischmann, who types independently, is viewed with suspicion, while Stephen Hawking is not?
RPM, the method created by Soma Mukhopadhyay, does not use physical prompts at all. No one touches the person writing, but instead a stencil board is held in front of the person writing. The stencil letter board, it is hoped, will be eventually faded and replaced with a laminated letter board with the goal, in my daughter’s case, being able to move to a qwerty keyboard, which is how Emma now communicates with me as well as with the person she has weekly RPM sessions with. Still, there are those who insist that no matter how steady the letter board is held, the person holding it is manipulating it ever so slightly and enough to influence the person writing. Or, as is the case with Carly and others who type independently, it doesn’t matter, the fact that they are not able to speak seems to be all people need to discount their words, no matter how they communicate. All of this would be laughable if it were not for the tragic fact that people’s voices are being discredited and silenced.
My friend Kerima Cevik, of the blog The Autism Wars, recently wrote “My Standing Position of Facilitated Communication” and posted it on Facebook. It immediately went viral and brings up a number of excellent points consistently ignored by those who seek to discredit FC. Please read it. I find it incredible that people, almost all of them psychologists, just as Bruno Bettelheim claimed to be (and not neuroscientists) continue to come up with all kinds of theories regarding any number of things involving autism and Autistic people, things like Theory of Mind and Cognitive Empathy. All of these are “theories” and not scientifically proven as fact, yet they are treated as fact, while things like RPM and FC are ridiculed for not being scientifically proven and dismissed, while other methods like ABA are applauded, funded and given a golden seal of approval. One more question to consider, why is it that people who are aphasic are not immediately given ABA? No one recommends ABA as a therapy for someone who has had a stroke and as a result cannot speak.
I urge all of you to consider, regardless of what other people decide they believe, if a child cannot communicate through spoken language what are their options? Whatever the approach is, whether it uses pictures, hand gestures, eye movement, pointing, or some other form of communication I have a series of questions I ask.
Does this approach presume competence?
Would I use this system for a non-autistic person who cannot speak?
Does it infantilize?
Is this way of communicating limiting or is it a bridge to more complex communication?
This issue is one that hurts us on a weekly basis. So much time is wasted proving the competence of our children. It is never assumed. Thank-you so much for continuing to raise this issue Ariane.
It’s mind boggling the amount of time and energy it takes to convince people that our children are far more capable than most are wiling to believe.
Thank you, thank you, thank you!! As always, you have said what I have been thinking – and said it so well!
I HEART these posts so much. This post needs to be posted EVERYWHERE!
Aw… thank you so much.
This is such an incredibly important post as well as an outstanding argument debunking the debunkers, particularly Ariane’s comparisons with ABA hand prompting (and the observation that no one seeks to discredit Stephen Hawking’s authorship even though he is also unable to speak without the aid of a communication interface).
I’ve been attending a conference in Arizona all week: Toward a Science of Consciousness. Consciousness, neurology, the mind-body problem (called the “hard problem” here), physics, biology– these are all components of the issue being studied. I’m in heaven because all these issues have obsessed me long before Emma was born and obsess me even more now that we’ve had the privilege of living with a quite amazingly different form of consciousness every day.
There are many schools of though regarding the nature of consciousness, which I will elaborate on in another post. But what is most interesting to me and related to this article is that most of the people speaking here and attending seem to fall into two basic camps:
Those who “know” what consciousness is (dogmatically affiliate themselves with a certain school of thought) and rigorously (loudly) defend their view no matter what evidence is presented that might cast reasonable doubt on their positions and;
Those who don’t “know” and remain open to new ideas, multiple conceptual frameworks and continuously challenge their own views as a means of enriching their search for understanding. More simply put, those who are open-minded and those who are close-minded.
Skepticism is a healthy component of analytic inquiry and in fact, is integral to open-mindedness. On the other hand, entrenched dogmatic skepticism as a worldview in itself, not only limits the ability of the seeker to reach the most intelligent conclusions, but also serves as a weapon for attacking and attempting to silence any opposing views.
As I said when I reshared this on Facebook, this is just another example of why I adore you. 💕 So glad you’re having a great time!
“No one recommends ABA as a therapy for someone who has had a stroke and as a result cannot speak.”
Yes! Good point!
Actually behaviour anslysis is used in many more areas than just autism treatment. Here is just one of many similar studies:
Thanks for this, Ariane…Jamie swims with a good friend frequently at a pool and health club. Jamie’s friend’s communication support person noticed an adult man observing Rick and Jamie speaking to each other through typing. When he approached them, he told the support person he had had a stroke recently and has difficulty with word retrieval and expression. She relayed how difficult it was for this man to make himself understood. Anne handed him one of the laminated letter-boards she uses when at the pool, and he was so excited about being able to clarify through the board, what he had been trying to say. (she told him to keep the board). This man is a dad and probably in this late 30’s.Late, we were talking about why this is not done more often for people who have lost their ability to speak due to medical incidents. There is a much broader application for typed communication. From personal family experience, when someone has lost their ability to communicate, family members are frantically driven to remedy that; perhaps because their competence has been assumed for all their life–no need to “prove” themselves, as our children have had to do. We need to have that same sense of urgency for all who cannot communicate!
Exactly. I agree completely!
I work with a student who have very few spoken words. It frustrates me no end the number of people who think that because he doesn’t speak he doesn’t know what is going on around him or to him. I struggle with ways to help him communicate and I feel like my hands are tied due to having to work within the school district and the red tape constraints. There is so much more this child could do and I would believe tell us given the opportunity to truly blossom. I see a burning intelligence within him that is screaming to be realised and acknowledged.
I see students similar to the one you’ve described all the time. Yes, it is awful that some may never be given the opportunity to communicate their thoughts… It is something I have nightmares about.
So well argued! Presuming competence is simply to treat other people with respect. And the way you contrast reaction to Carly’s words against Stephen Hawking’s is inspired. (I encountered Prof. Hawking briefly on a couple of occasions during my time at Cambridge University, and can definitely say that nobody ever questioned his competence.)
No, they don’t question his, do they? And yet, he is more profoundly challenged than many Autistic people who continue to have to prove themselves.
Thank you Ariana and the people commenting as well. It helps us too to have our thoughts well phrased and to get so many examples..
It just hurts us over and over. We are teaching Sophie (4) AAC on speak for yourself (app). Since she is considered “low functioning” (I despise that term) anytime we go into an interview, meeting etc, we know they have an idea of what kind of child they think she is. When they see her work on her app, requesting things and otherwise communicating, all of a sudden she is “high functioning”. And yet, profoundly autistic… And they’re at a loss as to what to do with her. Now, if they just saw her as Sophie and worked to get to know her as a person instead of trying to put her in some box based on what they think she can/can’t do… I hate that the burden of proof is always on her, a four year old child to prove (over and over) that she WANTS to communicate. And even if she does, you can see the denial or rationalizing on the people’s faces. Like yes, she communicated by a fluke! Kinda frustrated.
Infuriating…. just infuriating.
Thank you! We use FC and we have faded back to light support on Katrina’s upper arm, but now we are using a vertical qwerty letter board instead of a computer keyboard because she is able to focus better straight ahead rather than looking down. That is how we were able to fade back support, by watching how Emma does it. Our goal is independence.
Once a person is independent, I can’t imagine how anyone can question the source of the typing. This whole blog has made me re-evaluate my thinking about anyone who has an alleged “cognitive disability” whether they are verbal or not. I think we have a lot of bright minds watching us and forming their own unvoiced opinions about how well we perform in the areas of acceptance, compassion, and understanding.
Marie – this is so interesting what you say about being able to focus better straight ahead!
And I loved this “I think we have a lot of bright minds watching us and forming their own unvoiced opinions about how well we perform in the areas of acceptance, compassion, and understanding.” Just love that!
I’d fulcrum any answer to why FC/RPM gets the reception you cite, across Richard’s “hard problem” of the mind-body issue, and across the matter of “people’s voices … being discredited and silenced”.
I’d add philosophy, psychology and social-psychology to the disciplines Richard lists as contributing to address of the “hard problem”.
Our societies and their cultures tend to establish a hard demarcation between the body (taken to be material) and the mind (taken to be immaterial). Individuals who reject that demarcation, and do so outside the protection of disciplines, tend to be seen as mad. This hard demarcation is buttressed by well nigh everything in our organised collective life.
However, that hard demarcation is an illusion. The difficulty then is that to (existentially and in realtime) transcend that illusion, you have to go the edge of the ground (body of metaperspective and meta-presumption) on which the social/societal/cultural edifice stands, pick it up in its entirety, and progress to an absolutely fresh take on that entirety.
Autistically developing children do this fresh take naturalistically and organically and reflexively. This takes their developing and the occurring they have across that developing, to outcome that our mainstream social/society struggles to map. As consequence they map everything so off their mainstream map, as some deficit version of what they can map. What they thereby perversely map is the landscape of autism.
That perverse mapping of the autistic explains autistic silence materially. As such it is not an outcome open to non-material intervention. What FC/RPM does is a complex social-psychological intervention, a non-material intervention.
Presuming competence and demonstrating competence with FC/RPM involves dynamics and transactions which the grounding understanding of a mainstream project and process does not allow for. Scepticism about FC/RPM is then a manifestation of the inertia of a prevailing status quo.
The sustaining of that status quo entails silencing a variety of voices; the autistic involving an extreme of such silencing. Scepticism and silencing then manifest the same underlying dynamic. Inertia attaches to the massivity and complexity of that status quo situation.
What FC/RPM might demonstrate, involves fundamental transcendence of what grounds our societies, involves a fundamental shift in our understanding of the hard problem and its demarcations. It is not then surprising that those identifying with those societies retreat into scepticism about the unleashing of autistic voices.
This is really interesting Colin… I can’t wait for Richard to get home so I can discuss what you’ve written here with him!
Thanks much for your thoughts on these topics Colin. I’m don’t fully understand all the nuances, but I completely agree with these points:
“Our societies and their cultures tend to establish a hard demarcation between the body (taken to be material) and the mind (taken to be immaterial). Individuals who reject that demarcation, and do so outside the protection of disciplines, tend to be seen as mad.”
“However, that hard demarcation is an illusion. The difficulty then is that to (existentially and in realtime) transcend that illusion, you have to go the edge of the ground (body of metaperspective and meta-presumption) on which the social/societal/cultural edifice stands, pick it up in its entirety, and progress to an absolutely fresh take on that entirety.”
This is a HUGE point of contention among the various schools of thought represented at this conference. The group known as Type A Materialists argue that consciousness is nothing more a bio-computational function of the brain. On the other end of the spectrum (yes, there’s a big spectrum here too!) is the group known as Panpsychism, which postulates that everything in the universe is consciousness, that it is THE fundamental and irreducible composition of all energy and that all matter (or the illusion of matter) arises from consciousness, instead of consciousness being a component of biology that is observing/interacting with matter/universe.
Hence, lots of spirited and quite interesting arguments! Guess which end of the spectrum I’m NOT on?
“Autistically developing children do this fresh take naturalistically and organically and reflexively.”
I’m quite certain this is correct.
“What FC/RPM might demonstrate, involves fundamental transcendence of what grounds our societies, involves a fundamental shift in our understanding of the hard problem and its demarcations. It is not then surprising that those identifying with those societies retreat into scepticism about the unleashing of autistic voices.”
I would love to know more regarding this specific topic, as it is quite remarkable and frankly baffling how it is that Emma was/is able to work with Soma so easily and yet Ariane had to claw her way up to be able to have detailed conversations with Emma (I am so much further away).
Richard, I wanted to reply to what you had to say. Set out to do that, and just as my reply should have been consummating, I got beached on a difficult personal shoal.
Then been reading many of the voices that Ariane is sharing today. When I read what ‘Elizabeth’ had to say about Soma, it resonated with something I was minded to speak to.
Soma is clearly a highly specific person: Elizabeth speaks to Soma’s scientific aspect; and what she describes of how Soma proceeded, tells of a highly skilled educator.
Across biographically-determined division-of-labour, we are all situated differently in a vast web of grounding and situation. We all do something different that can be offered in support of others.
It would be pointless for me to try to summarise what you and Ariane and your son and extended family, each bring into play in supporting and nurturing Emma; but it is palpably clear that all of you do so bring gifts of amazing power and effect into play.
Maybe Soma is like a pulsing centre of something valuable. Maybe we cannot do what Soma does. Maybe its more a matter of the pulses and ripples of what Soma does, stimulates what it will in what it touches.
Neither you nor Ariane or any person should beat themselves up over what they are not, when what they are is enough.
The etiquette varies depending on the person, so I have decided to ask rather than assume… Can I please reblog this using the reblog button without adding much of my own comment. This was so well written and so important that I feel a strong need to share. Please let me know. Thankyou
Rachel, thanks for asking and feel free to reblog. The only objection I ever have is when people do not provide the appropriate links back to the original piece and/or copy and paste the entire piece as their own. Again thanks for asking.
As an educator and a parent of a child with ASD I find that as professionals develop “theories” they do so in good faith and then as these theories begin to be put to practical use there seems to be a sense of ownership or micromanagement of the theory that occurs. Theorists want to claim their method as best & it can only work if it’s kept pure & not contaminated with other strategies. Instead of being seen as a work in progress, which I believe is the definition of a theory, it becomes the solution. I find that necessity is still the mother of invention and as parents work with their children they become the “experts” on their children. Historically theories like frigid mothering being the cause of autism have be cast out, so I don’t worry about the “experts” Take what works and make it your own, tweak it, reinvent it, & intermingle strategies until it feels right. I believe the experts in autism are the individuals labeled “autistic” & following our children’s leads are often the best, most humane path we can take. As for the keyboard being placed vertically, I think that’s a perfect example of an “on the spot” adjustment that can make a big difference. There is something about “crossing the midline” that may make a horizontal keyboard more difficult. Also, we are hearing now that the old fashioned blackboard with the white chalk letters actually stands out better than the whiteboard with black letters. I don’t know how that’d work on an iPad or whatever, but just thought I’d bring that up. Loving this site and all of the amazing, brilliant, caring people whose lives are being brought together.
Reblogged this on End Autism Stigma and commented:
Ariane Zurcher has given me permission to reblog her post on Facilitated Communication and Rapid Prompting Method. Although both my boys and I can speak I like to promote awareness and acceptance of other peoples experiences with autism and Ariane wrote an exceptional account of methods to assist people who are unable to speak to communicate through the typed word and on the importance of presumption of competence, which follows here:
Thank you Ariane. As I said on my facebook page when I shared, I want to add that some people might not achieve independence because of movement and motor planning. I agree that independence is a great goal but it is still frustrating that we seek independence because, in great part, we need validation. It should not be this way. It should not be imposed on us. My main goal, personally, is to express myself through typed words
This is a very good point and I can’t believe I didn’t include it. Am amending the post now. Thank you as always for your insightful and measured input and please know how sorry I am that I didn’t say this in the original post.
Don’t feel bad Ariane. You did mention it, implicitly. It is all part of the presumption of competence
I wish I could instantly transport the combined findings of all the speakers I’ve been listening to for the last four days at the conference I’m attending, titled “toward a science of consciousness” but I will attempt to summarize:
– no one knows for certain what consciousness is, though many believe they know, claim to know, and will go to any lengths to defend their position, including blanket denials of any significant data that conflicts with their entrenched “understanding”
– “consiousness” is variously defines as: the mind, the brain, neurology, awareness, attention, perception, understanding, and everything in the universe (the Panpsychism school).
– Consciousness is generally regarded as one of the great unsolved mysteries of science
– there are about ten “schools of thought” regarding the nature of consciousness. Some people who identify with these positions may agree with certain aspects of the other positions, but never completely. Some people disagree with the other positions axiomatically
– the leading authorities in each school are highly intelligent people
My conclusion regarding the debunkers of FC and RPM, (and even the independent typing of people they have bewilderingly labelled of incapable of such, i.e.the Steven Hawking “exclusion”):
The so-called “leading experts” attacking the validity of FC and RPM frequently have no scientific background whatsoever and those who are credentialed NEURO-scientists are likely either unaware of the full breadth of recent findings in consciousness studies, or are among the group of no-matter-what-you-say-that-contradicts-my-position-I-refuse-to-even-consider-the-possibility-that-you-may-be-correct dogmatists.
These people, like the dogmatists I’m hearing every day, will almost certainly NEVER change their position, no matter how compelling the evidence, and will continue their efforts to suppress and invalidate the voices of autistics and many other people who write to communicate (except Steven Hawking) if for no other reason than self-aggrandizement and/or the desire to control other people.
Life is too short and too wonderful to waste on these willingly blind cranks.
So, in short, fuck ’em.
You know what. You’re so right! Fuck ’em.
That is spot on Amy. It doesn’t matter to me that my son is facilitated to tpe as he can express himself fluently but it is the need to validate his abilities to the rest of the world that makes independent typing the target.
What I don’t get is the incongruency often refused to be seen. Would these be the same scientist who have spent 1.5 billion dollars to say, well, gee, regarding autism– we know what it isn’t?
I just want to add that there is research supporting the use of FC. One of these studies involved recording their eye-tracking whilst the person used FC. I work with 4 of the adults studied, all of whom looked at letters before moving to point to them. One man’s looking pattern was so impressive (because he looked ahead at several letters, spelling words with his eyes before he moved to point) that his results were written up and published in the Autism Journal in January 2012-
‘Hidden communicative competence: Case study evidence using eye-tracking and video analysis’ : -L.http://aut.sagepub.com/content/16/1/75.full.pdf
Interestingly, he found looking and pointing simultaneously very difficult when he first started FC.
I get really, really tired trying to “prove” the validity of FC. But just to add to the evidence a little, I am currently working with two young people who still need physical support to get their thoughts out, but both are paying very close attention at all times, and if an incorrect letter appears on the computer screen, they immediately pull their hand away from mine and make the correction with no support at all. One of them often says the word out loud as he types or even before he types it. Sometimes I wonder if all the evidence in the world would change the hearts and minds of the hard-core skeptics!
The AAC Journalist (similar device to Stephan Hawking) often gets attacked for no prove its her typing the messages as well