Because of apraxia. Zaid in the article decided to agree with people who discredit the concept of apraxia, which describes a difficulty with initiating/executing motor plans that are not necessarily well-established and automated motor patterns, in other words motor patterns with significant procedural memory, or well-myelinated neural p…
Because of apraxia. Zaid in the article decided to agree with people who discredit the concept of apraxia, which describes a difficulty with initiating/executing motor plans that are not necessarily well-established and automated motor patterns, in other words motor patterns with significant procedural memory, or well-myelinated neural pathways.
One of the difficulties non-speakers have is that what IS highly automated or “overlearned” (such as typing in a favorite YouTube URL) becomes a loop rather than a procedure with a helpful/reliable on and off ramp. The painstaking, slow process of acquiring letterboarding skills and having to use mental energy to both think about the content and direct the motor simultaneously, blends these skills together and makes them useful.
The issue with this argument is that while some individuals with autism also have motor issues, we see these methods like FC/RPM/S2C being used with individuals who have no major motor function issues. Jason, for instance, is in a video using an iPad. He skateboards. He drinks beverages without assistance. I can gather all this from just looking at Marie's Instagram. But he can't tap on a board without assistance? There are also AAC devices that allow individuals, without a facilitator, to communicate even if they do have motor function issues. Stephen Hawking used one. The introduction of the facilitator is being rationalized in the comment above with scientific leaps that have not been shown or proven. It might be Soma Mukhopadhyay's theory, but it's not one that is defended by neuroscientists.
Quite frankly I also found no explanation for why individuals who never spelled a sentence in their lives suddenly gained the capacity to write grammatically perfect essays, op-eds, and even books. I work with neurotypical students every week -- middle schoolers and high schoolers -- who have issues with spelling and grammar. And they've been working day in day out for years of their lives in school learning how to read and write.
Are we supposed to suspend everything we know about child development to say these individuals picked up advanced reading/writing skills via osmosis and suddenly displayed them because of some work with repetitive physical tasks as is done in RPM/FC/S2C? They are reading and writing better than half of the kids in many school systems in America who have no autism or cognitive impairment. How is that possible, simply because they are being taught to engage in a repetitive process where they are rewarded for tapping the right letters but cannot communicate without the aid of an expensive facilitator? What kind of communication is that?
Listen, I have worked with dozens of nonspeakers. I interact with them almost every day. Their apraxia presents in different ways and to different degrees. I do not know Jason and I think you need to broaden your scope of exposure to more families with spellers and get to actually know the nonspeakers themselves. Broadly speaking about “motor issues” is not sufficient. Even ASHA acknowledges the concept of apraxia of speech even though they refuse to presume competence in no speakers’ minds.
If their apraxia presents in different ways and to different degrees, why is spelling/letterboarding so uniformly successful? Why is it implemented basically the same way everywhere? And why is it only for tapping letters on a stencil -- the mind/body disconnect is existent only there?
Spellers the movie tells us that millions of people are being underestimated and can use these processes to finally communicate their thoughts.
If you value these individuals, why not work with the leading scientists on the matter and help their families do double-blind testing? Don't you want to know whether these methods are really working or whether the facilitators are involved in a process that is making them dependent on them? I would never accept teaching any of my students that they are incapable of writing without me. If they were only capable of getting the right answers because I either moved their arm or gave them affirmation for tapping the right letter on the SAT, I would consider myself to have failed at educating them.
Zaid, I appreciate your writing in general and I believe you mean well. But I’m sorry, when you have relationships with real people, and shared experiences with them and their families, and are witness to a new kind of closeness, trust, etc. that comes from presuming competence and then witnessing that competence being born out, asking for double blind testing to corroborate it is bullshit.
Letterboarding is broadly successful because like anything, if done well, it is applied to the particular individuals.
The article talked about how with other AAC devices some time is spent at the beginning to prompt and help with skill development. That’s what we do too. Why does it make sense to you that there should be some unspecified and arbitrary limit that must be placed on the process to make it legitimate? Because that was how I read it. Like, we do some prompting at first but get rid of it as soon as possible.
In S2C we use prompts that are appropriate to the end of achieving accuracy. It takes how long it takes because individuals are different. But we safe those prompts before spellers get to the stage of open communication. What you didn’t see if you watched the spellers movie is the months and often years of skill development that precedes all of those examples of open communication.
I'm sympathetic to you trying to help these individuals. In my view, anyone who is laboring to help another is worthy of respect.
But I also know that anytime anyone tried to do a study to prove authorship in this example, the RPM and S2C communities actively work to block participation in the study.
Why block participation? Why not work hand in hand with autism and communications disorders researchers to figure out what really works?
And maybe you can talk with them about the years of skill development you say it takes to get these kids to the point they're writing college essays, op-eds, and books. Because I know that I work with neurotypical kids and many of them can't achieve this level of literacy after spending a decade in K-12 public education.
It takes a very long time to teach a kid how to read and then to teach them how to write. A very long time. You speak about your personal experience, I also have a lot of personal experience teaching reading and writing to kids. Just ask of the kids I helped get through their classes or into college.
And what I'm seeing here is that practitioners of this pseudoscience are claiming they can do it much faster and much better with children who face far more profound challenges. And conveniently, they refuse to test whether their methods work and even bully people out of participating in testing.
There is research being done. But there’s a kind of skepticism of “prove it or I won’t believe you” that is harmful. These guy are extremely sensitive, deal with high levels of anxiety, on balance, and have a lot of people out there who are unworthy of their trust. Look into researchers like Vikram Jaswal from UVA and Elizabeth Torres in New Jersey. Don’t get stuck in this tunnel vision of methodology that is used and designed specifically to discredit. There is good reason why parents stay clear of these things/people.
Isn't it potentially harmful for it to be unproven? I've offered several examples in the article of potential harms.
For instance, if my son told me he wanted to marry a woman and I didn't know if that was his words or his facilitator's, that would definitely be an ethical dilemma. Of course I'd demand proof. It's the same reason I demand proof that my students I tutor now are actually doing their work. Presuming the competence...of the method is not particuarly respectful of these students in my view.
By the way, speaking of Syracuse, when I was there I briefly ran into a cult. Totally different thing. They were latent Marxists. And they kept doing repetitive tasks and the same things over and over and over and I'd ask them why don't you try to use computers (their view is that computers were unsecure) why don't you interest yourself in electoral politics? And it was like, no we're just going to keep doing the same thing over and over we've been doing since the 1970's.
FC was born in the 1970s. The slogan presume competence was born around the same time, it was pioneered by a special education teacher who was an FC proponent. Repeating the same slogan over and over and using it as a justification for doing the same thing over and over is, in my eyes, not genuine concern for individuals. It's not quite a cult, but it's one of the qualities I saw when I met the real thing.
I wonder what the response would be from the neo-FC proponents if one of their formerly non-verbal practitioners suddenly expressed support for and a desire to vote for Donald Trump?
I can understand a parent’s desire to believe that there is a real live normal kid inside their autistic child. But watching the videos of these kids just slapping the keyboard while not even looking at it, while their attendant explains what they are saying is absurd and requires a double blind study be performed before wasting another minute on this latest swindle, however well intentioned it may be.
That’s amazing. I thought FC had been completely discredited after going 0 - 2 million in double blind studies. Yet it still lives along with similar cons. My mother taught special education for her entire career and was thrilled when FC came along thinking she’d finally be able to speak to some of her students. She was crushed when it was exposed as a hoax. Yet before that happened it was used to put some people in prison and ruined lives “with the best of intentions.” True believers will overlook anything in service to the cause.
Methodology that is designed to discredit is the best kind. If this technique can pass double blind testing, then it will immediately prove that it works, or at least provide strong evidence that it does. The fact that its proponents don't want to undergo these simple and easy tests implies very strongly that they know their technique doesn't work. If you disagree, just do the test!
I heard Elizabeth Torres speak recently. The work she and her colleagues are doing in partnership with those who learned to communicate and access the world via LB based systems is so needed and will likely change how we approach autism interventions. Torres' work is based on solid science and real data. Unlike the interests and quasi sciences out there shouting "EBP's" from the rafters - systems which have already scaled up and gathered forces to try to block any efforts that call into question their ineffective methodologies. I feel like it is time for those who truly believe in the humanity and ability of humans to do so much more than what skeptics and systems tend to predetermine that they can do, to go on the offensive. That is what is happening. That is what Elizabeth Torres seems to be doing. That is what multiple methodologies and non-profits are doing. It is having impact and likely will force thousands who work in the field to either adapt or find new careers.
Because of apraxia. Zaid in the article decided to agree with people who discredit the concept of apraxia, which describes a difficulty with initiating/executing motor plans that are not necessarily well-established and automated motor patterns, in other words motor patterns with significant procedural memory, or well-myelinated neural pathways.
One of the difficulties non-speakers have is that what IS highly automated or “overlearned” (such as typing in a favorite YouTube URL) becomes a loop rather than a procedure with a helpful/reliable on and off ramp. The painstaking, slow process of acquiring letterboarding skills and having to use mental energy to both think about the content and direct the motor simultaneously, blends these skills together and makes them useful.
The issue with this argument is that while some individuals with autism also have motor issues, we see these methods like FC/RPM/S2C being used with individuals who have no major motor function issues. Jason, for instance, is in a video using an iPad. He skateboards. He drinks beverages without assistance. I can gather all this from just looking at Marie's Instagram. But he can't tap on a board without assistance? There are also AAC devices that allow individuals, without a facilitator, to communicate even if they do have motor function issues. Stephen Hawking used one. The introduction of the facilitator is being rationalized in the comment above with scientific leaps that have not been shown or proven. It might be Soma Mukhopadhyay's theory, but it's not one that is defended by neuroscientists.
Quite frankly I also found no explanation for why individuals who never spelled a sentence in their lives suddenly gained the capacity to write grammatically perfect essays, op-eds, and even books. I work with neurotypical students every week -- middle schoolers and high schoolers -- who have issues with spelling and grammar. And they've been working day in day out for years of their lives in school learning how to read and write.
Are we supposed to suspend everything we know about child development to say these individuals picked up advanced reading/writing skills via osmosis and suddenly displayed them because of some work with repetitive physical tasks as is done in RPM/FC/S2C? They are reading and writing better than half of the kids in many school systems in America who have no autism or cognitive impairment. How is that possible, simply because they are being taught to engage in a repetitive process where they are rewarded for tapping the right letters but cannot communicate without the aid of an expensive facilitator? What kind of communication is that?
Listen, I have worked with dozens of nonspeakers. I interact with them almost every day. Their apraxia presents in different ways and to different degrees. I do not know Jason and I think you need to broaden your scope of exposure to more families with spellers and get to actually know the nonspeakers themselves. Broadly speaking about “motor issues” is not sufficient. Even ASHA acknowledges the concept of apraxia of speech even though they refuse to presume competence in no speakers’ minds.
If their apraxia presents in different ways and to different degrees, why is spelling/letterboarding so uniformly successful? Why is it implemented basically the same way everywhere? And why is it only for tapping letters on a stencil -- the mind/body disconnect is existent only there?
Spellers the movie tells us that millions of people are being underestimated and can use these processes to finally communicate their thoughts.
If you value these individuals, why not work with the leading scientists on the matter and help their families do double-blind testing? Don't you want to know whether these methods are really working or whether the facilitators are involved in a process that is making them dependent on them? I would never accept teaching any of my students that they are incapable of writing without me. If they were only capable of getting the right answers because I either moved their arm or gave them affirmation for tapping the right letter on the SAT, I would consider myself to have failed at educating them.
Zaid, I appreciate your writing in general and I believe you mean well. But I’m sorry, when you have relationships with real people, and shared experiences with them and their families, and are witness to a new kind of closeness, trust, etc. that comes from presuming competence and then witnessing that competence being born out, asking for double blind testing to corroborate it is bullshit.
Letterboarding is broadly successful because like anything, if done well, it is applied to the particular individuals.
The article talked about how with other AAC devices some time is spent at the beginning to prompt and help with skill development. That’s what we do too. Why does it make sense to you that there should be some unspecified and arbitrary limit that must be placed on the process to make it legitimate? Because that was how I read it. Like, we do some prompting at first but get rid of it as soon as possible.
In S2C we use prompts that are appropriate to the end of achieving accuracy. It takes how long it takes because individuals are different. But we safe those prompts before spellers get to the stage of open communication. What you didn’t see if you watched the spellers movie is the months and often years of skill development that precedes all of those examples of open communication.
I'm sympathetic to you trying to help these individuals. In my view, anyone who is laboring to help another is worthy of respect.
But I also know that anytime anyone tried to do a study to prove authorship in this example, the RPM and S2C communities actively work to block participation in the study.
Why block participation? Why not work hand in hand with autism and communications disorders researchers to figure out what really works?
And maybe you can talk with them about the years of skill development you say it takes to get these kids to the point they're writing college essays, op-eds, and books. Because I know that I work with neurotypical kids and many of them can't achieve this level of literacy after spending a decade in K-12 public education.
It takes a very long time to teach a kid how to read and then to teach them how to write. A very long time. You speak about your personal experience, I also have a lot of personal experience teaching reading and writing to kids. Just ask of the kids I helped get through their classes or into college.
And what I'm seeing here is that practitioners of this pseudoscience are claiming they can do it much faster and much better with children who face far more profound challenges. And conveniently, they refuse to test whether their methods work and even bully people out of participating in testing.
There is research being done. But there’s a kind of skepticism of “prove it or I won’t believe you” that is harmful. These guy are extremely sensitive, deal with high levels of anxiety, on balance, and have a lot of people out there who are unworthy of their trust. Look into researchers like Vikram Jaswal from UVA and Elizabeth Torres in New Jersey. Don’t get stuck in this tunnel vision of methodology that is used and designed specifically to discredit. There is good reason why parents stay clear of these things/people.
Isn't it potentially harmful for it to be unproven? I've offered several examples in the article of potential harms.
For instance, if my son told me he wanted to marry a woman and I didn't know if that was his words or his facilitator's, that would definitely be an ethical dilemma. Of course I'd demand proof. It's the same reason I demand proof that my students I tutor now are actually doing their work. Presuming the competence...of the method is not particuarly respectful of these students in my view.
By the way, speaking of Syracuse, when I was there I briefly ran into a cult. Totally different thing. They were latent Marxists. And they kept doing repetitive tasks and the same things over and over and over and I'd ask them why don't you try to use computers (their view is that computers were unsecure) why don't you interest yourself in electoral politics? And it was like, no we're just going to keep doing the same thing over and over we've been doing since the 1970's.
FC was born in the 1970s. The slogan presume competence was born around the same time, it was pioneered by a special education teacher who was an FC proponent. Repeating the same slogan over and over and using it as a justification for doing the same thing over and over is, in my eyes, not genuine concern for individuals. It's not quite a cult, but it's one of the qualities I saw when I met the real thing.
I wonder what the response would be from the neo-FC proponents if one of their formerly non-verbal practitioners suddenly expressed support for and a desire to vote for Donald Trump?
I can understand a parent’s desire to believe that there is a real live normal kid inside their autistic child. But watching the videos of these kids just slapping the keyboard while not even looking at it, while their attendant explains what they are saying is absurd and requires a double blind study be performed before wasting another minute on this latest swindle, however well intentioned it may be.
https://www.facilitatedcommunication.org/blog/do-facilitators-cast-multiple-votes-on-election-day
There is actually some controversy about facilitated communication and voting
That’s amazing. I thought FC had been completely discredited after going 0 - 2 million in double blind studies. Yet it still lives along with similar cons. My mother taught special education for her entire career and was thrilled when FC came along thinking she’d finally be able to speak to some of her students. She was crushed when it was exposed as a hoax. Yet before that happened it was used to put some people in prison and ruined lives “with the best of intentions.” True believers will overlook anything in service to the cause.
Methodology that is designed to discredit is the best kind. If this technique can pass double blind testing, then it will immediately prove that it works, or at least provide strong evidence that it does. The fact that its proponents don't want to undergo these simple and easy tests implies very strongly that they know their technique doesn't work. If you disagree, just do the test!
I heard Elizabeth Torres speak recently. The work she and her colleagues are doing in partnership with those who learned to communicate and access the world via LB based systems is so needed and will likely change how we approach autism interventions. Torres' work is based on solid science and real data. Unlike the interests and quasi sciences out there shouting "EBP's" from the rafters - systems which have already scaled up and gathered forces to try to block any efforts that call into question their ineffective methodologies. I feel like it is time for those who truly believe in the humanity and ability of humans to do so much more than what skeptics and systems tend to predetermine that they can do, to go on the offensive. That is what is happening. That is what Elizabeth Torres seems to be doing. That is what multiple methodologies and non-profits are doing. It is having impact and likely will force thousands who work in the field to either adapt or find new careers.