Using letterboards and facilitators, non-verbal individuals are finally able to spell out messages. But many specialists warn that the messages may not be their own.
I have an adult son on the autism spectrum - he is verbal to a minor degree; he repeats things we say to him and uses a lot of what we call "TV Talk" as expression. I remember trying out a lot of different methods of communication, and they all really seemed to fall apart when used outside of the therapeutic environment. He is extremely prone to suggestion, and it's hard to know for sure what thoughts are his versus those that were put in his head by us or others. I can understand just how easy it would be to want these miracles to be true. But I'm also happy to let my son be the unique person that he, I'd hate to let someone else become his voice.
Highly recommend Dr. Amy Lutz's book Chasing the Intact Mind to anyone interested in these issues. Lutz is an academic who studies disability and also the parent of a severely autistic and nonverbal child. The book discusses FC and also a host of other related issues. The "intact mind" is her name for the insistence among parents and some in the therapeutic world that every severely cognitively disabled person harbors a "normal" intellect that's fighting to get out. But of course, severe cognitive disabilities exist. And as suggested at the end of this piece, at some point the dogged attachment to the idea that these kids are communicating with discredited methods amounts to saying that they only have value, rights, and dignity if they can talk like the rest of us. And that's not progressive or compassionate.
"Highly educated parents are actually, I think, more prone to fall for it, than less-educated parents because they have a greater need for their kid to be highly literate,”
I wonder how many other pitfalls this quote could apply to.
It's quite sad how people can just delude themselves. I mean, the problem with FC is that it didn't work without the cueing. So why would a method that is supposedly just FC without the cueing, work? This should immediately invite heavy skepticism, which could easily be resolved by simple double blind tests...which the practitioners seem resistant to for obvious reasons.
I do get why the parents don't want to test it though. They finally got what they were dreaming of and they don't want to risk losing it. But it will have to happen eventually. Better for it to happen early, before they build up too much of a fake persona for their children.
I have an 8 year old daughter with severe autism. She was completely non verbal for years but can speak some words now. She also has an AAC. Like mentioned in the article, the device does utilize icons/pictures for some communication. However, it also allows her to type/spell words which she actually utilizes more often than the pictures at this point.
Some of the people in article seem to downplay the AAC as something beneath the autistic person because it utilizes pictures but many AAC devices do not have to be used that way.
One thing I can confirm …as a parent with a non verbal / child autism I have looked into multiple cures and fixes and would try anything to help them.
In Jason’s case, it is not a mirage. I’m old friends with his parents, but do not see them often since they moved to NYC. I saw them at a mutual friend’s house two summers ago. What Jason communicated exactly fit his actions. Smiling broadly and expressing happiness to be in Evelyn’s pool again, as he so often had been as a young child. Excusing himself because being with us even at a small gathering was too much stimulation. He went inside for the rest of the party. On our way out, I had a brief chat with him. He answered my questions. He even looked directly at me for a part of it. He hugged me at then end. From his parents, I learned that they are still coping with and managing his sometimes erratic and even violent behavior. It has been tough on them, but they are devoted parents. I admire them tremendously. I do not understand the need to doubt what they’re saying about their son. They are highly educated, yes. They have had the means to be able to do all they can for their son. But at a great cost, financially and emotionally. They are not rich, but persistently loving and protective parents.
I'm glad to hear that your experiences with Jason were positive and he seems to be enjoying himself socially and physically. What I'm curious about, however, is why Marie, his mother wrote in 2020 that he reads at a Kindergarten level and why his essays he's published are at 8th grade level (I used a readability formula to score it).
Usually it takes about 9-10 years of reading and writing in formal environments for a neurotypical student to work their way up to writing like that. How did Jason go from Kindergarten to 8th grade in two years (I believe Marie said he started RPM therapy in 2022)?
I think Jason's personal and social state is one thing, whether he's being given authentic instruction and allowed to authentically express himself through these methods is another thing.
And the consequences are real. I'm happy to hear he was enjoying himself swimming, but does he want to audit a class on literature? Most kids his age probably wouldn't want to. It does seem like something his mother would want him to do.
Though I read your "cult of smart" article, and came across this quote:
"While the left thinks that socioeconomics and government policy determine educational outcomes and the right credits these outcomes to hard work and culture, deBoer posits instead that the main factor is genetics."
...is Freddie deBoer a race realist? If he believes the primary driver of educational outcomes is genetics; doesn't that mean he believes that the primary driver of the racial gap in educational outcomes is genetics? (i.e Black people on average perform worse in school because on average their genes are less suited to studying?)
He actually emphasizes in his book that he only believes in IQ differences along the lines of differences between individuals. He doesn't agree with the group-based claims.
"I can write on my own. It is is me writing, although I sometimes like getting input on my arm to help it get oriented In space. I do not appreciate having my intelligence called into question."
Jesus. The language is so telling. There is no way someone with the son's impairments, who couldn't receive a normal education, writes and spells like this.
Sort of like what Annie Sullivan did with Helen Keller? Or that's what the article and this question made me think of, along with the similarity to parapsychology claims, I mentioned in another reply.
Your question of harm is about specific things. Yes, of course you want to be careful and circumspect about what you do with spelled communication, how you elicit it, who is doing the part wrong, etc. There have been egregious scandals and those have been terrible things because of what was done. Having an affair with a client is always bad. That doesn’t implicate the entire concept that individuals have something to say but lack the reliable motor skills to get it out. If you had a non-speaker for a son who was using spelled communication you wouldn’t just suddenly one day be given some kind of announcement like that without a history of following the process, hopefully being involved in your own skills as a communication partner, and you would (if you were working with qualified people) not have weighty high-stakes conversations Iike that until you had spent a lot of time working on getting accuracy with known questions. You would develop a high level of trust with your son and/or another CRP before you’re dealing with something like that. Also, the insistence that you would need it to be verified as a “method” over and above your own direct observations over the course of months or maybe years seems sort of unlikely.
The point of mentioning the scandal was to explain why using a potentially fraudulent method can cause harm. As to whether the method is fraudulent...look, I'm not saying the individuals in the article don't have some thoughts or feelings that they have trouble expressing. But those thoughts and feelings almost certainly do not rise to the level of newspaper op-eds and literature classes. If the proponents of this method want us to believe that, they can simply submit their method to be tested. That they don't speaks volumes about the confidence they hold in their methodology.
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.
COULD WRITE? And at a level more indicative of a potential Ivy League intellect rather than of a typical 15 year old? Brains must be in the blood because it turns out his mother got a doctorate from Columbia!
All types of people had everything they needed to know this was fake as fuck, but they failed to do anything. Why?
First, I hope you are aware of your bias. It’s pretty palpable from article. You describe people promoting this spelling technology as “anti-vaxxers”, a reductive and overly simplistic slur to describe people who are simply activists for better vaccine safety. Vaccines are the only consumer product where manufacturers are shielded from all liability, and, protected from market forces due to CDC mandates. Meanwhile and especially if we’re talking about double blind study requirements, these products have never gone through a proper placebo study. Public Health have been claiming safety without the proof required by the scientific method. Stanley Plotkin just published an article in NEMJ or Lancet admitting this inconvenient fact and stating that “more funding” is needed to actually do this important clinical work. Seems pretty late in the game, don’t you think? Public Health agencies had to be sued over years and years to get them to admit that they never did the work they claimed to have done.
So, just saying, as a journalist, surely some skepticism should be warranted in terms of what behaviors this liability free/ regulators asleep at the wheel or looking the other way environment, might incentivize in drug companies that have been criminally charged over and over again with all kinds of fraud and malfeasance for putting profits over lives. People forget these same greedy companies, unrepentant convicted criminals, also make the products called vaccines. Same people.
Anyway, back to article, there appears to be a problematic conflation of two technologies; one that was debunked in the 90’s and the one that’s discussed in the film. A therapist turned detractor that was involved in a very public scandal with the previous technology and ended up with egg on the face, opines that this is the same and so must not work.
I would expect her not to want egg on the face twice but would have liked a much deeper technical explanation for how it’s the same or how it’s different. The article did not give me that.
This new approach using potentially similar technology may actually work because of even slight changes. I was the Founder/CEO of a medical device company and know that even slight variations in protocols can charge outcomes.
And lastly, ASHA is the perfect example of Public/Private partnerships that, to me, are a huge part of the problem in our rotted health care system. These kinds of organizations always partner with bunch of
Pharmaceutical monopolies to promote very profitable interventions for things like autism.
You talk about the profit motive of spelling technology but drugs are way more profitable. Look at ASHA’s website, all they do is wax poetic about new drugs coming out and corporate partnerships with drug companies. Aren’t they incentivized to be critical of their partner’s competitors?
And yes, this technology 100% competes with Pharma’s solutions to things autistics suffer from like anxiety or violent outbursts, all of the issues that parents said that this technology ameliorates.
Are you sure I did that? I don't require ever using the term anti-vaxx, I referred to some of them as vaccine skeptics. And I asked why they don't have the same skepticism about these spelling techniques. Overall, I don't think I commented fully on vaccines other than to make that point -- they have a worldview about environmental causes of autism and that is contributing to their support for mind-body disconnect theory, etc. But I didn't really get into their claims on vaccines.
I agree there are some differences between FC and RPM/S2C but folks involved in the latter will not engage in testing to make sure it works. So it runs into the same problem -- there's prompt/cue dependency on a facilitator. I know of no other form of communication that REQUIRES having another person help you do the communication, rather than learning ASL or using an AAC device independently.
It would seem that desperate parents will do anything, even if unproven, and subject to charlatanism, in order to gain something beneficial, both for their child, and for their own fulfilment as a parent. Thank you for this article.
Excellent essay and research, Zaid. The scientific method seems to be thrown out the window here, as the results could upset the $ gravy train. Is it just me, or are there parallels here to the trans community, where the medical $ fix for what might be mental or emotional anguish, is a change in hormone levels of patient, and in extreme cases, removal or addition of body parts one was not born with.
I believe most facilitators firmly believe in what they're doing. But anytime you threaten someone's livelihood, they tend to rationalize their beliefs. My background is political reporting. How many politicians just happened to have the exact same beliefs as what was good for their career at the time? Is Pat Notaro going to acknowledge that he made a documentary that featured no skepticism of a pseudoscience? What would that do to his long lineup of corporate gigs?
That is a fair statement and you’re not wrong. I would argue, however, that this criticism can be applied to the myriad of professionals who work with autistics and DONT presume competence and are unable to open themselves to the possibility of being wrong about the theories they espouse. You’re right about people being threatened by the idea of their work disappearing and I think at its root it has more to do with identity and feeling like they’re doing something important, etc.
I will say for myself that I haven’t been doing this long and, yes, I’m invested and therefore biased. Also, it is NOT a high earning job but it is deeply, deeply meaningful. Every day I go to work and interact with people in ways that are beautiful and very mutually uplifting.
Like I said in the other comment, I respect you for working with this population of kids and I can never denigrate another educator.
However, I don't think that the autism and communications disorder experts who tried to study FC over the years were just trying to destroy the practice. They approached it with an open mind and used rigorous scientific methods to figure out what works and what didn't. Many of them had loved ones who themselves were autistic. But FC just didn't pan out. Now they'd love to study RPM and S2C rigorously but people such as Soma actively oppose scientific research on the matter.
Only one side is refusing to do the scientific research on the matter, and only one side is just falling back on slogans and anecdotes. And look I have a masters from the very school that pioneered the use of FC in the United States (Syracuse). But I was in a different department that taught us to think critically and always reexamine our beliefs, and that means doing very thorough science to figure out what works and what doesn't. Sadly that other department at Syracuse has done a lot of damage to the scientific process.
I think skepticism is important. I’ve also read some books about the subject and worked with autistic children myself (I am NOT trained in RPM). I think dyspraxia is real and I have first hand experience in working with a 2 year old who seemed to, by all conventional ways of assessing, have little to no cognition of language or ability to respond to language. Sweet kid who wandered around the house stimming to himself and after tons of prompting, could not seem to point when directed “show me dog” in puzzles, flash cards, books, etc. He often seemed to be trying to but guessing arbitrarily. One day, we were singing If You’re Happy and You Know it” and he was on my lap. I tried lightly holding his wrist, or his elbow, I can’t remember which. Once I did that, I felt kind of trying to move his hands to clap them. I asked his parent to try, and he had the same experience. The thing about the double blindness is that kids are sensitive to anxiety and the sense of being tested and they may fail, in those scenarios. With this same kiddo, I had some success in using a PECS system for requesting 2 favorite snacks, but when my supervisor came to watch, it totally bombed and he seemed unable to do it. Read Ido in Autismland, Fall Seven Times, get up 8 or The Reason I jump (Rupa’s son wrote them) or Carly’s voice. All of these detail the journey of someone who started our nonverbal and eventually learned to type. They do not all use RPM, and their grammar is nowhere near perfect.
I think it’s kind of odd to say that a person with an IQ of 40 who is too impaired to talk is sensitive enough to the nonverbal signals of his or her promoter that they can write sentences based off that.
I do agree that the level of success in a short time can be suspect, and I don’t assume that RPM is a miracle cure for all kids with autism. Having sex with your client is never ok. But don’t throw the baby out with the bath water. Go and observe these kiddos for yourself. Many autistic kids are savants, so near perfect spelling is not impossible. Hyperlexia is a thing too, and I’ve worked with 2 year old who couldn’t ask for a snack but could spell 3 letter words on their own (without RPM, just playing computer games or with magnetic abcs)
Hard work and opportunity. Someone could have the capacity and work ethic to learn but no exposure or the capacity and worth ethic to become a world class skater but no ice rink. Many factors are involved but some people are uncomfortable with nuance and prefer reductive binary arguments.
I have an adult son on the autism spectrum - he is verbal to a minor degree; he repeats things we say to him and uses a lot of what we call "TV Talk" as expression. I remember trying out a lot of different methods of communication, and they all really seemed to fall apart when used outside of the therapeutic environment. He is extremely prone to suggestion, and it's hard to know for sure what thoughts are his versus those that were put in his head by us or others. I can understand just how easy it would be to want these miracles to be true. But I'm also happy to let my son be the unique person that he, I'd hate to let someone else become his voice.
Highly recommend Dr. Amy Lutz's book Chasing the Intact Mind to anyone interested in these issues. Lutz is an academic who studies disability and also the parent of a severely autistic and nonverbal child. The book discusses FC and also a host of other related issues. The "intact mind" is her name for the insistence among parents and some in the therapeutic world that every severely cognitively disabled person harbors a "normal" intellect that's fighting to get out. But of course, severe cognitive disabilities exist. And as suggested at the end of this piece, at some point the dogged attachment to the idea that these kids are communicating with discredited methods amounts to saying that they only have value, rights, and dignity if they can talk like the rest of us. And that's not progressive or compassionate.
"Highly educated parents are actually, I think, more prone to fall for it, than less-educated parents because they have a greater need for their kid to be highly literate,”
I wonder how many other pitfalls this quote could apply to.
It's quite sad how people can just delude themselves. I mean, the problem with FC is that it didn't work without the cueing. So why would a method that is supposedly just FC without the cueing, work? This should immediately invite heavy skepticism, which could easily be resolved by simple double blind tests...which the practitioners seem resistant to for obvious reasons.
I do get why the parents don't want to test it though. They finally got what they were dreaming of and they don't want to risk losing it. But it will have to happen eventually. Better for it to happen early, before they build up too much of a fake persona for their children.
This whole situation reminds me a lot of parapsychology claims that could never be reproduced in controlled situations.
I have an 8 year old daughter with severe autism. She was completely non verbal for years but can speak some words now. She also has an AAC. Like mentioned in the article, the device does utilize icons/pictures for some communication. However, it also allows her to type/spell words which she actually utilizes more often than the pictures at this point.
Some of the people in article seem to downplay the AAC as something beneath the autistic person because it utilizes pictures but many AAC devices do not have to be used that way.
One thing I can confirm …as a parent with a non verbal / child autism I have looked into multiple cures and fixes and would try anything to help them.
In Jason’s case, it is not a mirage. I’m old friends with his parents, but do not see them often since they moved to NYC. I saw them at a mutual friend’s house two summers ago. What Jason communicated exactly fit his actions. Smiling broadly and expressing happiness to be in Evelyn’s pool again, as he so often had been as a young child. Excusing himself because being with us even at a small gathering was too much stimulation. He went inside for the rest of the party. On our way out, I had a brief chat with him. He answered my questions. He even looked directly at me for a part of it. He hugged me at then end. From his parents, I learned that they are still coping with and managing his sometimes erratic and even violent behavior. It has been tough on them, but they are devoted parents. I admire them tremendously. I do not understand the need to doubt what they’re saying about their son. They are highly educated, yes. They have had the means to be able to do all they can for their son. But at a great cost, financially and emotionally. They are not rich, but persistently loving and protective parents.
I'm glad to hear that your experiences with Jason were positive and he seems to be enjoying himself socially and physically. What I'm curious about, however, is why Marie, his mother wrote in 2020 that he reads at a Kindergarten level and why his essays he's published are at 8th grade level (I used a readability formula to score it).
Usually it takes about 9-10 years of reading and writing in formal environments for a neurotypical student to work their way up to writing like that. How did Jason go from Kindergarten to 8th grade in two years (I believe Marie said he started RPM therapy in 2022)?
I think Jason's personal and social state is one thing, whether he's being given authentic instruction and allowed to authentically express himself through these methods is another thing.
And the consequences are real. I'm happy to hear he was enjoying himself swimming, but does he want to audit a class on literature? Most kids his age probably wouldn't want to. It does seem like something his mother would want him to do.
I truly don’t understand your investment in not believing. I believe what I saw and experienced.
Nice piece. How did you get interested in this subject? I've only ever seen political articles from you until now.
Interesting story!
Though I read your "cult of smart" article, and came across this quote:
"While the left thinks that socioeconomics and government policy determine educational outcomes and the right credits these outcomes to hard work and culture, deBoer posits instead that the main factor is genetics."
...is Freddie deBoer a race realist? If he believes the primary driver of educational outcomes is genetics; doesn't that mean he believes that the primary driver of the racial gap in educational outcomes is genetics? (i.e Black people on average perform worse in school because on average their genes are less suited to studying?)
He actually emphasizes in his book that he only believes in IQ differences along the lines of differences between individuals. He doesn't agree with the group-based claims.
I am very skeptical when we use a statistically flawed metric to show that the "students left behind" are simply genetically incompetent.
https://medium.com/incerto/iq-is-largely-a-pseudoscientific-swindle-f131c101ba39
"I can write on my own. It is is me writing, although I sometimes like getting input on my arm to help it get oriented In space. I do not appreciate having my intelligence called into question."
Jesus. The language is so telling. There is no way someone with the son's impairments, who couldn't receive a normal education, writes and spells like this.
Why not teach them sign language?
Sort of like what Annie Sullivan did with Helen Keller? Or that's what the article and this question made me think of, along with the similarity to parapsychology claims, I mentioned in another reply.
Aye.
Your question of harm is about specific things. Yes, of course you want to be careful and circumspect about what you do with spelled communication, how you elicit it, who is doing the part wrong, etc. There have been egregious scandals and those have been terrible things because of what was done. Having an affair with a client is always bad. That doesn’t implicate the entire concept that individuals have something to say but lack the reliable motor skills to get it out. If you had a non-speaker for a son who was using spelled communication you wouldn’t just suddenly one day be given some kind of announcement like that without a history of following the process, hopefully being involved in your own skills as a communication partner, and you would (if you were working with qualified people) not have weighty high-stakes conversations Iike that until you had spent a lot of time working on getting accuracy with known questions. You would develop a high level of trust with your son and/or another CRP before you’re dealing with something like that. Also, the insistence that you would need it to be verified as a “method” over and above your own direct observations over the course of months or maybe years seems sort of unlikely.
The point of mentioning the scandal was to explain why using a potentially fraudulent method can cause harm. As to whether the method is fraudulent...look, I'm not saying the individuals in the article don't have some thoughts or feelings that they have trouble expressing. But those thoughts and feelings almost certainly do not rise to the level of newspaper op-eds and literature classes. If the proponents of this method want us to believe that, they can simply submit their method to be tested. That they don't speaks volumes about the confidence they hold in their methodology.
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.
You're telling me that people believed that a kid
Who could not read
COULD WRITE? And at a level more indicative of a potential Ivy League intellect rather than of a typical 15 year old? Brains must be in the blood because it turns out his mother got a doctorate from Columbia!
All types of people had everything they needed to know this was fake as fuck, but they failed to do anything. Why?
A few comments.
First, I hope you are aware of your bias. It’s pretty palpable from article. You describe people promoting this spelling technology as “anti-vaxxers”, a reductive and overly simplistic slur to describe people who are simply activists for better vaccine safety. Vaccines are the only consumer product where manufacturers are shielded from all liability, and, protected from market forces due to CDC mandates. Meanwhile and especially if we’re talking about double blind study requirements, these products have never gone through a proper placebo study. Public Health have been claiming safety without the proof required by the scientific method. Stanley Plotkin just published an article in NEMJ or Lancet admitting this inconvenient fact and stating that “more funding” is needed to actually do this important clinical work. Seems pretty late in the game, don’t you think? Public Health agencies had to be sued over years and years to get them to admit that they never did the work they claimed to have done.
So, just saying, as a journalist, surely some skepticism should be warranted in terms of what behaviors this liability free/ regulators asleep at the wheel or looking the other way environment, might incentivize in drug companies that have been criminally charged over and over again with all kinds of fraud and malfeasance for putting profits over lives. People forget these same greedy companies, unrepentant convicted criminals, also make the products called vaccines. Same people.
Anyway, back to article, there appears to be a problematic conflation of two technologies; one that was debunked in the 90’s and the one that’s discussed in the film. A therapist turned detractor that was involved in a very public scandal with the previous technology and ended up with egg on the face, opines that this is the same and so must not work.
I would expect her not to want egg on the face twice but would have liked a much deeper technical explanation for how it’s the same or how it’s different. The article did not give me that.
This new approach using potentially similar technology may actually work because of even slight changes. I was the Founder/CEO of a medical device company and know that even slight variations in protocols can charge outcomes.
And lastly, ASHA is the perfect example of Public/Private partnerships that, to me, are a huge part of the problem in our rotted health care system. These kinds of organizations always partner with bunch of
Pharmaceutical monopolies to promote very profitable interventions for things like autism.
You talk about the profit motive of spelling technology but drugs are way more profitable. Look at ASHA’s website, all they do is wax poetic about new drugs coming out and corporate partnerships with drug companies. Aren’t they incentivized to be critical of their partner’s competitors?
And yes, this technology 100% competes with Pharma’s solutions to things autistics suffer from like anxiety or violent outbursts, all of the issues that parents said that this technology ameliorates.
Are you sure I did that? I don't require ever using the term anti-vaxx, I referred to some of them as vaccine skeptics. And I asked why they don't have the same skepticism about these spelling techniques. Overall, I don't think I commented fully on vaccines other than to make that point -- they have a worldview about environmental causes of autism and that is contributing to their support for mind-body disconnect theory, etc. But I didn't really get into their claims on vaccines.
I agree there are some differences between FC and RPM/S2C but folks involved in the latter will not engage in testing to make sure it works. So it runs into the same problem -- there's prompt/cue dependency on a facilitator. I know of no other form of communication that REQUIRES having another person help you do the communication, rather than learning ASL or using an AAC device independently.
It would seem that desperate parents will do anything, even if unproven, and subject to charlatanism, in order to gain something beneficial, both for their child, and for their own fulfilment as a parent. Thank you for this article.
Excellent essay and research, Zaid. The scientific method seems to be thrown out the window here, as the results could upset the $ gravy train. Is it just me, or are there parallels here to the trans community, where the medical $ fix for what might be mental or emotional anguish, is a change in hormone levels of patient, and in extreme cases, removal or addition of body parts one was not born with.
I promise you there is no gravy train in this.
I believe most facilitators firmly believe in what they're doing. But anytime you threaten someone's livelihood, they tend to rationalize their beliefs. My background is political reporting. How many politicians just happened to have the exact same beliefs as what was good for their career at the time? Is Pat Notaro going to acknowledge that he made a documentary that featured no skepticism of a pseudoscience? What would that do to his long lineup of corporate gigs?
That is a fair statement and you’re not wrong. I would argue, however, that this criticism can be applied to the myriad of professionals who work with autistics and DONT presume competence and are unable to open themselves to the possibility of being wrong about the theories they espouse. You’re right about people being threatened by the idea of their work disappearing and I think at its root it has more to do with identity and feeling like they’re doing something important, etc.
I will say for myself that I haven’t been doing this long and, yes, I’m invested and therefore biased. Also, it is NOT a high earning job but it is deeply, deeply meaningful. Every day I go to work and interact with people in ways that are beautiful and very mutually uplifting.
Like I said in the other comment, I respect you for working with this population of kids and I can never denigrate another educator.
However, I don't think that the autism and communications disorder experts who tried to study FC over the years were just trying to destroy the practice. They approached it with an open mind and used rigorous scientific methods to figure out what works and what didn't. Many of them had loved ones who themselves were autistic. But FC just didn't pan out. Now they'd love to study RPM and S2C rigorously but people such as Soma actively oppose scientific research on the matter.
Only one side is refusing to do the scientific research on the matter, and only one side is just falling back on slogans and anecdotes. And look I have a masters from the very school that pioneered the use of FC in the United States (Syracuse). But I was in a different department that taught us to think critically and always reexamine our beliefs, and that means doing very thorough science to figure out what works and what doesn't. Sadly that other department at Syracuse has done a lot of damage to the scientific process.
I think skepticism is important. I’ve also read some books about the subject and worked with autistic children myself (I am NOT trained in RPM). I think dyspraxia is real and I have first hand experience in working with a 2 year old who seemed to, by all conventional ways of assessing, have little to no cognition of language or ability to respond to language. Sweet kid who wandered around the house stimming to himself and after tons of prompting, could not seem to point when directed “show me dog” in puzzles, flash cards, books, etc. He often seemed to be trying to but guessing arbitrarily. One day, we were singing If You’re Happy and You Know it” and he was on my lap. I tried lightly holding his wrist, or his elbow, I can’t remember which. Once I did that, I felt kind of trying to move his hands to clap them. I asked his parent to try, and he had the same experience. The thing about the double blindness is that kids are sensitive to anxiety and the sense of being tested and they may fail, in those scenarios. With this same kiddo, I had some success in using a PECS system for requesting 2 favorite snacks, but when my supervisor came to watch, it totally bombed and he seemed unable to do it. Read Ido in Autismland, Fall Seven Times, get up 8 or The Reason I jump (Rupa’s son wrote them) or Carly’s voice. All of these detail the journey of someone who started our nonverbal and eventually learned to type. They do not all use RPM, and their grammar is nowhere near perfect.
I think it’s kind of odd to say that a person with an IQ of 40 who is too impaired to talk is sensitive enough to the nonverbal signals of his or her promoter that they can write sentences based off that.
I do agree that the level of success in a short time can be suspect, and I don’t assume that RPM is a miracle cure for all kids with autism. Having sex with your client is never ok. But don’t throw the baby out with the bath water. Go and observe these kiddos for yourself. Many autistic kids are savants, so near perfect spelling is not impossible. Hyperlexia is a thing too, and I’ve worked with 2 year old who couldn’t ask for a snack but could spell 3 letter words on their own (without RPM, just playing computer games or with magnetic abcs)
Genetics plays a part in capacity to learn as it does in the capacity to become an olympic athlete. Hard work does the rest.
Hard work and opportunity. Someone could have the capacity and work ethic to learn but no exposure or the capacity and worth ethic to become a world class skater but no ice rink. Many factors are involved but some people are uncomfortable with nuance and prefer reductive binary arguments.