Tag Archives: controversy

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

 

Controversy and Commenting

Yesterday I quoted Ido Kedar, whose book, Ido in Autismland is his account of what it’s like for him as a non-speaking, Autistic, teenager.  The quotes I used were specifically about his experience with ABA, the acronym for Applied Behavior Analysis.  (Ido also has a blog of the same name.)   A couple of people accused me of “falsehoods” and spreading “inaccurate information”.  One person wrote, “I have never read so falsehoods in one post in my life.  You clearly have zero understanding of ABA or the methods used in its approach.”  Except that the bulk of the post he was objecting to was made up of quotations from Ido’s book about his experiences as an autistic person.

I asked for clarification and was told, “Falsehoods being projected do not need to come as a quote from you directly. This is your blog and you are the one responsible for providing accurate information. If you are going to show a quote from a student, then maybe you should also factor in that the particular therapist the student had was not a very skilled one or a qualified one at that.”  Except to make such a claim that “this particular therapist was not skilled or qualified” would be inaccurate and something I cannot possibly know as I’ve never met the therapist being referred to.  Evidently telling a lie is acceptable if it’s done so in favor of another’s opinion, however quoting someone’s firsthand experience is reason to be accused of creating falsehoods.

Another commenter wrote, ” The posts regarding ABA on this blog are grossly inaccurate. Unfortunately, the author of this post (and subsequent commentary) are so misinformed on the topic that they are not able to recognize exactly how inaccurate the information is. For those of us who understand the field, this can certainly be frustrating.”  Except that so many being referred to and who were commenting are Autistic.  In fact a couple of those who commented yesterday are teachers and work directly with Autistic children, one is a professor and teaches disability studies to special education educators at the university level.  These are a few of the people this commenter believes to be “misinformed” and even went so far as to scold, “I urge you to become better informed on the topic.”  It would have been comical had it not been so upsetting to read the condescending tone and level of rage this one post and comments inspired.

I’d like to clarify a few things…  Let’s take ABA out of this, I do not care what the “therapy” is being called, if it is not respectful of the person it is meant to help, if it uses dehumanizing techniques such as electric shock, restraints, isolation rooms, repetitive testing requiring the person to master an action before being allowed to move on, it is not a therapy I will ever support.  If a therapy is meant to teach compliance, teach someone whose neurology and sensory issues do not make sitting still simple or easy, who cannot listen, attend and make eye contact all at the same time, I question it’s objectives.  If a therapy is looking to “fix” another’s neurology, make that person “indistinguishable from their same age neurologically different peers” I will continue to speak out against it and will encourage others to do the same. If the therapy in question does not presume competence at its core and does not take into account the person’s specific neurology and sensory issues, it is flawed.  If these ideas are threatening to some, so be it.

So let’s stop talking about ABA specifically, because it seems to me the conversation continues to get derailed about what ABA is or isn’t, how some practice it or do not, how it has or has not evolved, instead, let’s discuss these other concepts.  And if you believe something that goes against what I’ve just said, fine, quote me in the comments section, tell me why you disagree, back up your ideas with examples, preferably with words from Autistic people and I will happily listen.  Accusing me of “falsehoods”, “inaccuracy”, being condescending, lashing out and making personal attacks are not comments I will allow through moderation.

Colin sent me this graphic, something I think we can all relate to…

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Doing the Best I Can…

Yesterday I was targeted by someone whose name I am not going to divulge because doing so will only further engagement and unnecessary dialogue.  I am going to keep this about my reaction to being attacked and will not engage in a counter attack.  One of the things I have learned over the years is that when someone attacks, my knee jerk response is to attack back, but this never actually does anything to further the conversation, encourage discussion or an exchange of ideas.  Nothing changes when two people angrily engage in self-righteous, self-justified shouting matches.  So why do it?

Sadly, within any community, positions are taken, an “us” and “them” mentality which serves to separate each other from the very people we appear to want to engage.  I do not completely understand this desire by some to engage others with their anger.  However I do know first hand the feeling of frustration when I have believed something and had those beliefs questioned, judged or argued with.  When someone says with absolute conviction that they know for a fact that a certain therapy, treatment or way of supporting another does or does not work, I figure it’s worth investigating.  I do my best to look at the pros and cons, I try to read the various scientific studies, the anecdotal stories, and control studies if there have been any.  I take into account how many people were used in the study, I look at who conducted the study and whether there were any conflicts of interest in the study’s results.  I read any controversy surrounding the therapy.

If I know someone personally who is using whatever the therapy, treatment or support is, I reach out to them, ask them questions and observe.  If what I am observing counters the conclusions of some of the scientific studies done, I take that into account and look at why that might be.  Beyond wanting to do what will prove best for my daughter I try to remain open to both sides.  However, if a number of Autistic people have PTSD because of a particular therapy or speak out about it with their reasons why, I listen to their accounts and place more weight in their experiences than I do in studies conducted by neurotypical “experts”.  I also listen to those who are Autistic and have found something particularly helpful, even if many neurotypicals suggest otherwise.

These are the things I do.  Others may have different approaches, but this is what has proven most helpful for me.  When someone then attacks me for doing a particular therapy, treatment or support with viciousness, it hurts, but it does not make me change my opinion, in fact it does the opposite.  When someone personally attacks me with sarcasm, condescension and aggression it serves to make me wonder why they would do so.  When they then back their vitriolic, venomous statements by saying that “science” is behind them and that I cannot possibly have read the studies they cite, when they dismiss opposing studies as being “shoddy” and “poorly” done as non-science or “pseudoscience”, there is no point in responding.  When they then further their comments by saying that I am being “unethical” and suggest that by engaging in such support I am hurting those who cannot speak by putting words in their mouth, it crosses the line of being about ideas, opinions, science or anything else, it is a personal attack.

I come here day after day and share my thoughts, feelings, views.  I try to be honest, above all else and in doing so open myself up to attack.  I know that.  I cannot do this any other way.  I am vulnerable in a way that those who attack me are not.  That’s okay.  No one is forcing me to write a blog or to be as honest as I can be.  These are the decisions I’ve made.  I try hard to keep my side of the street clean, as they say.  Some days I’m more successful at that than others, but I always keep showing up and trying as best I can.  In the end that’s all any of us can do.

Unrelated photograph taken Christmas Day on the ranch

Christmas Day

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