Tag Archives: Carly Fleischmann

FC and RPM

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?

Emma types on a qwerty keyboard

Emma types on a qwerty keyboard

 

The Conversation That Isn’t

The biggest problem with the conversation regarding autism and Autistic people is that it is largely had without the inclusion of those who are being discussed.  When Autistic people attempt to join the conversation they are often told – the very fact you can speak removes you from the conversation because you are not representative of those who cannot and those who cannot speak are believed to have little if nothing to say.

When someone who is Autistic and does not speak, types to communicate, they are often discounted as not really being able to type, even when they are able to do so independently.  One of the many google search terms that come up repeatedly, leading people to this blog is “Carly Fleischmann fake.”  I continue to find people’s adamant disbelief, even when shown clear evidence of ability, baffling.    For those who do not know who Carly Fleischmann is, please go to her website and Facebook page.  She is a non speaking Autistic teenager who defies all the stereotypes about what it means to be non speaking and Autistic.  People insist that she is an anomaly, but go to a conference like TASH, Autcom, the ICI Conference or go to the resources page on this blog and read the many blogs and written works by non speaking Autistic people and you will quickly see that not only is Carly not a “fake” or a “hoax”, she is not an anomaly; she is in good company and one of many.

“…. a tendency among professionals to band together when their expertise is challenged and to deny resolutely the existence of evidence which, if admitted, would force a reevaluation of established practice.” ~ Speechless by Rosemary Crossley

Rosemary Crossley on the topic of IQ tests, writes, “Tests of intelligence purport to assess how well you take information in, and what you are able to do with it, on the basis of what comes out.  If nothing quantifiable comes out you are untestable.”  She then goes on to say, “What is surprising is that the results are assumed to reflect what the child and teenager are thinking and what they are able to learn, and are used as a basis of making decisions about their futures.

So we continue to have a conversation about Autistic people, yet when those who can speak do so, they are discounted as not representative of those who cannot, and when those who cannot speak, type, they are doubted, believed to be a hoax or an anomaly and not representative of others who share their inability to speak.

Does anyone else see a problem with all of this?  Anyone?

Me and Em at the ICI Conference in July, 2013

Me & Em

Non-Speaking People Who Type

This is a topic I would prefer not to discuss, but a few things happened recently that make it difficult not to write about this.  So… here goes…

Facilitated communication has had a bumpy history.  It began in the ’70’s and has been lurching along ever since.  There have been studies done, both proving it’s validity and others proving it as an invalid method of aiding those who do not speak to communicate.  This post is not about whether FC is valid.  Those who do not believe in FC’s ability to help those who cannot speak will not be swayed by anything I write here.  For those who are interested in reading more about FC and its history you can do so by reading this and this and the many links embedded in these posts.

What I will write about however, is all those FC users who have gone on to type independently.  And here is where things get really interesting.  Those same people who are convinced FC is all a mirage, a kind of non-speaking, Autistic version of an elaborate magic show, remain convinced the non-speaking person who now types independently is not really doing so.  Those people continue to insist it is a “hoax” despite witnessing, some even after seeing in real life, a non-speaking person type on their own.

Just to be clear, I am not writing about hand over hand or a hand on a forearm assistance.  I am writing about the many people who began typing with a facilitator, but who now type independently.  By independently I am referring to those who may still need a trusted person standing nearby.   Some type with another person’s hand placed on the middle of their back, others may need a hand gently placed on their shoulder.  Yet these same people who speak out forcefully, often aggressively to any who dare write about someone who is non-speaking and writing of their experiences, say even a hand on the back proves these non-speakers cannot and do not type their own words.  They insist that they are merely puppets doing the bidding of the person who is physically nearby.

What fascinates me about this is that these same people who insist it’s all a “hoax” (this is the word they usually use) would rather believe a person can move a seated, non-speaking person’s hand to hit specific keys on a keyboard by virtue of their physical presence, rather than entertain the notion that this non-speaking person, may in fact, be typing their own words.  One such person commenting on a blog post about something unrelated to FC, but that had a link to Barb Rentenbach’s book, I Might Be You, wrote, ” I don’t consider typing with an arm on the shoulder independent typing. You can clearly see the facilitator nudging her towards the letters.”  Not to quibble, but seriously?  So this is like some sort of typed ventriloquism?  Touch someone’s back and direct them to write thoughts that are not their own?

I urge any of you who believe this is possible to try doing it… place your hand on another’s shoulder or the middle of their back and see if you are able to control what that person then types.  And while you’re at it, try standing next to the person and psychically urge them to write something.  It seems incredible, but there are those who not only believe this to be the case, but they then demand “proof” that this person is typing independently, despite the fact that they’ve just been given the very “proof” they asked for.  Evidently “proof” is subjective.

What bothers me about all of this is that those who are typing to communicate are doing so because they have no other means.  This is not a “choice” that’s being made.  The people who continue to insist they are a “hoax”, that it’s all a “mirage”, that they are being “controlled” are taking away the only way they can communicate.  They are silencing them.  They counter this assertion by saying that on the contrary, they are actually “advocating” for those who do not speak and are protecting those who are at the mercy of a facilitator who is putting words into another’s mouth.  Yet, even when confronted with a non-speaking person’s typed words, typed without anyone’s hand on their arm, they continue to insist the very presence of this other person is all it takes.  The transference of perceived power to cover up their dehumanization of another is convoluted.

If you google “Carly Fleischmann” the third entry that comes up is “Carly Fleischmann fake”.  Sadly Carly is not alone when it comes to such beliefs.  There is a long and horrible history of non-speaking people being discounted and effectively silenced by those who believe they cannot possibly be intelligent, insightful beings.  There are those who will dismiss people like Carly as an anomaly, a “prodigy” and thereby ignore the years of effort it has taken her to get to where she now is, or they conclude she is a “fake”.  There is nothing new about the silencing of human beings deemed inferior.  (Read Inventing the Feeble Mind by James W. Trent, Jr.)  The ingrained prejudices and dehumanization of Autistic people continues.

I want to end with one last thought, which is this – if you found yourself unable to speak, but could type to communicate, yet when you did so, people doubted the validity of your words, accused you of not actually writing what you’d so painstakingly typed, what would you do?  How would you respond?  How would you fight back?  Could you fight back?  Restraints come in many forms, but all are effective.

As Barb Rentenbach writes, “I might be you.”  For those who doubt that sentence is her own, you better hope those words are wrong.

Barb types with Lois’s hand on her back as Emma twirls her string – April 2013

Barb types

Acknowledging Other’s Achievements

When I asked Emma if I could post this video of her doing her latest “catch”, she said, “Yes!  Post on blog!”

I’ve written about Emma perfecting her “catch” ‘here‘ and ‘here‘ and I’ve mentioned too, the hours of practice it took, for her to get to this point.  It’s important you understand how hard she’s worked.   She didn’t suddenly climb up a ladder, grab onto the trapeze, swing a few times and then catch someone else’s arms one day.  She has been practicing this for years.  Just as she didn’t suddenly begin typing sentences or one day open up a book and start reading it, Emma has worked hard, incredibly hard and for anyone to suggest otherwise is doing her and others who are accomplishing wonderful things a tremendous disservice.

Far too often we hear stories of children and people who, seemingly miraculously, began reading grade level material or began typing their thoughts or began playing an instrument and to us, the reader, the person who has just now discovered this story, this video, this whatever it is, it seems it all happened “suddenly”, “miraculously”,  “overnight”, yet this is rarely the case.   Years and years of practice, of hard, hard work have taken place before that moment when we become aware of the person.  How many times have we heard about someone being an “overnight sensation” with lots of exclamation marks following those two words.  How often do we hear of someone who has accomplished incredible things, we marvel at them, but we also dismiss their tremendous accomplishments with our belief that it all happened “miraculously”.

The years leading up to those success stories are not so interesting to most of us.  We don’t really want to know about the daily grind, day after day of showing up to perfect or master a skill.  When we apply these same beliefs to people with disabilities we are doing them a tremendous disservice.  Not only are we ignoring the difficult work, the hours and hours they put, in practicing and honing their skills, we are dismissing all that hard work with words like “magical” and “miraculous” and we are ignoring just how hard that work is.   There is nothing miraculous about someone accomplishing something after putting in hundreds and thousands of hours of practice and hard work for years.  Their accomplishment is not an indication of our failure.  We do not need to dismiss someone else’s achievements to make ourselves feel better.

All those people who have gone on to prove themselves as more capable than most people gave them credit for are NOT examples of miracles.  They got to where they are through HARD WORK.  To all of you,  Emma Z-L, Carly Fleischmann, Tito Mukhopadhyay, Jennifer Seybert, Jamie Burke, DJ Savarese, Barb Rentenbach, Amy Sequenzia,  Emma Studer, Paige Goddard, Amanda Baggs, Henry Frost, Larry Bissonnette, Tracy Thresher, Sue Rubin, Alberto Frugone, Richard Attfield, Nick Pentzell, Rob Cutler (there are too many people to list) to all of you who have worked so hard, who continue to work every single day to communicate and do all that you do, your hard work is acknowledged and appreciated.  I need you to know how much I appreciate the days, months, years, and for some of you, decades that each of you has spent showing up, day after day to do what does not come easily.

You are leading the way for my daughter.  You are showing me how it’s done; I cannot thank you enough.

Emma practices climbing the rope wall

Nic & Em

A “Miracle” or the Norm?

Years ago I saw Autism is a World, about Sue Rubin who is non-speaking and Autistic.  I was amazed by her and thought how incredible she was.  I had similar thoughts when I read about Tito Mukhopadhyay, saw the news program about Carly Fleischmann, watched and listened to Amanda Baggs‘ You Tube video… there were others, all non-speaking for the most part, all Autistic and each time I was struck by how “miraculous” they were.  They gave me hope, but each one, individually, seemed incredible, too good to be true.  The word “miracle” implies a rare occurrence.  I didn’t dare believe any of these Autistic people were indicative of a larger truth.  When it came to my daughter, I could not make the connection.

I have to interrupt this post for a second because last week I went through the blog and deleted all the posts I thought might hurt my daughter’s feelings if she were to ever read them or ask me to read them to her.  (That I realized I needed to do this, is yet another example of how far I’ve come!)  I am not trying to erase the truth or the past, I just do not want those posts in the public domain for all to view, at my daughter’s expense.  I do not want people coming to this blog to read an old post and leave thinking I am supporting or encouraging people to try any of the various treatments we once did.  There is plenty of negative, stereotyped thinking going on when it comes to autism and Autistic people, I don’t want this blog to be one more place people come to read that.

As I was going through old posts I was confronted with the level of panic and desperation I felt not so long ago.  I was confronted with how completely I had bought into the way autism is represented in the world, encouraged by the media’s representation and the public’s ignorance of it.  None of which is in accordance with these stories of Autistic individuals, unless they are “miracles”.  So when I heard about people like Carly and Tito and Sue, I could not make the leap required to apply what they were accomplishing, to my daughter who was then in a private, special education, school being taught the same fairy tale going on two years.  A place where, as well-meaning as they certainly were, they were not taught or trained to presume competence of their students.  The curriculum, if you could call it that, was not remotely age appropriate, yet she was loved and safe, though not challenged intellectually; it seemed it was the best option available to us.

I was fortunate.  I had some terrific people who recommended books and documentaries that I’ve included on the Resources page of this blog.  I was asked to speak at the Autcom Conference and met a great many more Autistic people who do not speak or speak intermittently or un-reliably, but who are communicating a great deal.  So many, that it finally began to occur to me that maybe, just maybe, my daughter might be one of them.  Perhaps they were not the exceptions, perhaps she too could learn to communicate as so many of the Autistic people I was meeting were.  And once I made that connection, once I stopped viewing each person as a miracle, but began to wonder whether given appropriate accommodations this was more the norm, than not, that was when I was able to understand what practicing presuming competence really meant.  And the more I was able to do this, the more my daughter rose to the occasion.  The more she proved she could and did understand, the more I presumed her competence and on it goes…

Em types us a message that astonishes us ~ April, 2013

EmTypes ICI