The Telepathy Tapes - S2E44: Is Spelling Really “Debunked”? An Advocate Responds | Talk Tracks

Episode Date: August 5, 2026

After The New York Times published an opinion piece arguing that spelling-based communication has been “debunked,” writer and communication-rights advocate David Kaufer joins Ky Dickens t...o examine the claims, and the evidence they leave out.David shares how spelling transformed the life of his nonspeaking autistic son, Stone, revealing his intelligence, love of learning, and dreams for the future after years of being denied access to age-appropriate education and meaningful communication.Together, David and Ky unpack the arguments surrounding facilitator influence, the ideomotor effect, and decades-old message-passing studies frequently cited against spelling. They also explore newer eye-tracking research, the role of apraxia and regulation, potential conflicts of interest within autism research, and why nonspeakers are often required to prove authorship in ways speakers are not.Stone then joins the conversation to respond in his own words and share a message of hope with other nonspeakers. This episode asks what is lost when skepticism becomes dismissal, and why access to communication must be treated as a matter of dignity, safety, and fundamental human rights.Check Out David's Platforms:Substack: Kaufer InsightsYoutube Channel: Kaufer InsightsPodcast: The Lighter Side of the Spectrum_______Join The Telepathy Tapes Backstage Pass to get ad-free episodes, never-before-heard interviews, behind-the-scenes documentary footage, and access to our private Discord community.This is your invitation to come closer. To help shape what’s next. To be more than a listener… to be a co-creator of this paradigm shift. So if you’ve felt moved, if you’ve felt seen, if you’ve felt the call, subscribe today and join us: thetelepathytapes.com._______Thank you to our sponsors!Alloy - Try the original estrogen-powered M4 skincare from Alloy. Visit myalloy.com and use code TAPES for $20 off your first order! BiOptimizers - Make this the year you finally get your sleep, your energy, and yourself back. Get 15% off at bioptimizers.com/tapes when you use my code, TAPES.Ka'Chava - Go to kachava.com and use code TAPES for 15% off your first order.Luminara - If you’re curious about energy healing and ready to experience it for yourself, Luminara is offering 20% off your first session for listeners of The Telepathy Tapes. Just go to luminara.care and use code TAPES20.MUD/WTR - Ready to make the switch to cleaner energy? Go to mudwtr.com/TAPES and grab the starter kit. Use code TAPES for 43% off!Schedule 35 - Get 15% off all orders with code TAPES at Schedule35.co.Quince - Elevate your summer wardrobe. Go to Quince.com/tapes for free shipping on your order and 365-day returns.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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Starting point is 00:00:03 Hi everyone, I'm Kai Dickens, and welcome to the Talk Tracks, brought to you weekly by TTT Media. In this series, we explore the threads that weave together our understanding of reality, science, spirituality, consciousness, and even unexplained phenomena. Because every era has ideas once dismissed as impossible until someone was willing to investigate them seriously. And on this show, we do just that. This episode is brought to you by Schedule 35, the most trusted name in Cilocy. in products. Today I'm joined by David Koffer, a writer, advocate, speaker, and father to Stone, a non-speaking autistic young man whose life changed profoundly after he began spelling to communicate. We first came across David through Koffer Insights, his substack, where he brings
Starting point is 00:00:50 clarity, context, and a deeply personal perspective to some of the most complicated conversations affecting the non-speaking autism community. He writes about communication rights, research, education, inclusion, and policy, including the ongoing fight over a New York state bill intended to protect access to different forms of communication like spelling. David approaches these issues, not only as an advocate, but as a parent who spent years searching for a way to communicate more fully with his son. Like so many families, he had tried countless interventions and became understandably guarded against anything that might offer false hope. That experience felt especially relevant after the New York Times published an opinion essay titled,
Starting point is 00:01:30 Profound Autism is Difficult Enough Without the Stubunk Method. It was written by the mother of an autistic non-speaking son, and she argued that facilitated communication or rapid-prompting method or spelling to communicate or anything like that does not produce autonomous communication. The piece claimed that the messages are consciously or unconsciously, influenced by facilitators. She pointed to the historical message-passing studies
Starting point is 00:01:55 in which a non-speaker's response appeared to reflect information seen by the facilitator instead of themselves, which honestly could be looked at as an astounding telepathy test. She also argued that spelling offers family's false hope, can override a non-speaker's independently expressed preferences, and diverse attention and resources away from other forms of support. The article raised many of the same questions we've explored throughout the show, but it relied on older studies and on assumptions that continued to be repeated as settled science, to reinforce a particular conclusion about spelling-based communication.
Starting point is 00:02:29 It also gave little attention to newer research, eye-tracking research, the recent shocking findings of explicit bias and undisclosed conflicts of interest in autism research, or the growing number of non-speakers, families, and practitioners, reporting very different experiences. So we invited David to share what communication has made possible for his son, Stone, and to offer his perspective on the claims raised in the piece. So, David, before we get into the debate itself, I'd love for you to introduce yourself and tell us a bit more about Stone and your family's experience and, you know, what was life like before he could communicate with you? And how did you even hear about or discover spelling in the first place? Yeah, I'm David Koffer. I'm the father of 20-year-old twin boys, one of whom is non-speaking autistic, Stone. He has a great twin brother, Ty, who's wrapping up his sophomore year at the University of Washington. And the journey really started. when Stone was diagnosed on the spectrum just before their third birthday.
Starting point is 00:03:30 And like so many others, you know, we did all the early intervention stuff, got him enrolled in the special preschool, started with speech therapy, eventually did ABA therapy. He was in public school, the special ed program, which is a whole other story. And during this time, we knew that he, you know, his biggest challenge was communication. He was essentially non-speaking and couldn't really communicate his needs. And that was the most frustrating part. My background professionally is in communications. I majored in journalism.
Starting point is 00:04:06 I worked in public relations. And so I used to say how ironic is it that I'm a communicator and he can't communicate. But that was the part that eventually became unlocked. You know, we talk about kind of like life before communication for Stone and then there's life after. and couldn't be more polar opposite. Yeah, which is what we hear so often. And how did that unlock first occur? That happened in September 2022.
Starting point is 00:04:33 I was introduced to the book, Underestimated, J.B. Hanley's great book. I introduced so many to spelling to communicate in the world of spelling. And I happened to have a friend who was family friends with them, and she had followed our journey and reached out and said, hey, you might want to look into this. And I was like, all right.
Starting point is 00:04:49 I actually had bought the book already and was sitting on a shelf for months because I was like, again, so many other parents by this time when he was 16, almost 17, we had tried so many things. You don't lose hope, but you're a lot more skeptical, and you're just kind of like, yeah, you know, I'll get to it when I can. You kind of get used to this life that you're living with someone with such low expectations from society and from schools and all that. But I sat down and read it and, you know, was blown away by their experience. and then was fortunate enough to be able to connect with J.B. personally. And he was just like, dude, you got to do it. He's like, believe me. And he was like, here's what you need to do.
Starting point is 00:05:30 Go down there, do this immersion. I'm like, okay, okay. He's like, in six months, you know, you guys are going to be talking about college choices. And I'm sitting there. And I was just thinking, man, I'll just be happy if he could tell me what he wants for dinner. Let's just get to the basic level of wants and needs. And once that door was kicked open, he, went flying through it and progressed through the boards, as they said, became an open speller very quickly. It
Starting point is 00:05:56 created, like I said, life after spelling, which was amazing. I liken it to falling in love and a honeymoon. It was just so beautiful to finally be able to communicate. And J.B. was right. It wasn't quite six months, but it wasn't long until we actually had those dreams and said, you know what? This can happen. And he's on that path now. He's going to graduate in a year. We're going to start setting out college applications this fall. Never, ever would have dreamt this would happen. Never. And so once Stone became an open speller, and you began to understand, you know, the depth of his inner world and his intelligence, how did that change the way you saw education and, you know, the opportunities that he was being given in the outside world?
Starting point is 00:06:41 Within just a couple of months, we were having these great conversations. And it was clear that he was, of course, way smarter than the schools thought, you know, I had visited his classroom. This was supposed to be his junior year. And they had him counting coins, you know, which was an activity. I remember him doing in elementary school, and I couldn't believe it. So my wife and I requested letter boards in the school, say, hey, at least allow him to communicate. Let's try to get him some age-appropriate curriculum.
Starting point is 00:07:11 We were denied, like so many others also. And that really kind of started the fight. I mean, I couldn't believe that we were denied that fundamental right. I understand it. They specifically cited Asha as the reason they were denying it. Asha's very visible statement of opposition that they use. And for those who don't know, Asha, ASHA, stands for the American Speech Language Hearing Association. And it's probably one of the most prominent anti-spelling organizations.
Starting point is 00:07:45 Its position is that facilitated communications, of any sort is a discredited technique that should not be used. And that, quote, information obtained through the use of FC should not be considered as the communication of the person with a disability, end quote. At the time, Stone was still going to speech therapy. We had a speech therapist who brought me the Asha statement, you know, tried to tell me the harm that I was going to do to Stone. So she was on board with that propaganda.
Starting point is 00:08:11 But, you know, we kept going, obviously, and couldn't imagine not doing it. But like I said, the school would not relent. And we hired an attorney who specialized in education law. She had not had experience with non-speakers or with this particular area. So she was intrigued. She took it on. And we started the fight against the school district and eventually reached a settlement where they were willing to pay for Stone's education. We had pulled him out of his school.
Starting point is 00:08:39 Once it became clear that we weren't going to make any progress in terms of getting him age-appropriate curriculum, him. He was begging not to go back there. And we found this great school that provided one-on-one support. The director of the school was willing to allow letterboards. He met with Stone individually, and he was blown away by his capabilities. And we were off and running. And after that point, that really kind of committed me to the cause. I could see, obviously, the profound change it had for Stone. I mean, to say it's life-changing is still a huge understatement. And realizing, as I got more and more involved in the spelling community and with others and the non-speaking community. You know, this is a big problem, you know, communication. This is a fundamental human right.
Starting point is 00:09:25 And there's so many that are being denied this human right. That's just, I figured I had to do something. And so I want to utilize my communication, my PR, my writing background. And that's what kind of started the substack and publishing articles there and Facebook and all that. Yeah, you know, and it's something we've heard so often from so, many and why we wanted to bring you in for this conversation. So I guess, you know, when you first heard about the pushback from Asha and others, you know, was there ever time where you yourself had hesitation or doubt, you know, if this was a real communication? No, never. I mean, the only doubt I had was, again, similar to other parents ahead of time. Just the whole, I don't know if this
Starting point is 00:10:07 will work with our kid, sort of that approach, right? Like, because you'd hear stories throughout the years of, oh, try this biomed or try this whatever, right? And this has worked great for my kids. So you try it and, you know, same old result or whatever or no result. And you get guarded in terms of having that level of hope. I was cautiously optimistic when we flew to San Diego for the initial immersion with Don Marie. Okay, and just to pause for a second. So Don Marie Gavin is amazing. And she's the creator of the Spellers Method and leads workshops to get people spelling. So you go for course and what was it like? It was six sessions over three days and I figured worst case, you know, we're going to hang out in San Diego for three days. The best case, you know, we'll see
Starting point is 00:10:52 where this goes. And it blew me away beyond expectations. So once, I mean, literally that first session I was on board. Like it was just once you see it, you can't unsee it. Yeah. And that's where something like the New York Times piece is so interesting because not all skepticism comes from the same place, right? Like some of it come from people with no connection to this community at all. But this piece was written by the mother of a non-speaking child, someone who in many ways seems to share the same fear and frustration you once felt, which I think we all can understand, right, the fear of being misled or given false hope. And so, you know, when that criticism comes from another parent who believes, you know, strongly they're protecting their child,
Starting point is 00:11:31 I'm just curious, like, what your experience was reading that piece. Well, you know, I had two initial reactions reading that. First was kind of a level of sadness, frankly, for her and for her son, that she thinks that his potential is so limited that she's already reached that conclusion. And she has every right to do that. It's her child. I do not know her son at all. We're all in our own situation. So I respect that. I still think it's kind of sad because I'm a big proponent of reaching your potential, whatever that may be. And I think that message kind of came through, which is unfortunate, but it made me angry that she, you know, conflated so much and leaned on these really outdated and not very, like, scientifically proven studies. And that's where I also kind of
Starting point is 00:12:25 have said, you know, shame on the New York Times for platforming this level of an opinion without at least providing someone else to counter it. I mean, this isn't just like a small fringe group we're talking about. as you know. I mean, there are thousands and thousands now of families of, you know, spellers, typers, use whatever terminology you want to do, non-speakers who are communicating using some form in this methodology. This isn't just like a handful. You know, we've got university graduates. We've got, you know, those with masters. And for her to not acknowledge any of that, right? It was such a blanket statement like, this is preposterous, this can't be happening.
Starting point is 00:13:04 And essentially, you know, you just have a group of parents like me that were too naive. to understand that we're just being conned somehow. Yeah, and I don't want to focus, you know, too narrowly on her because, like you said, we don't know her or where she's coming from. But these arguments reflect much more broadly on the pushback against spelling-based communication. And the two central claims, you know, made in that piece are that, one, science doesn't support it. And two, when communication does occur, the facilitator may be consciously or unconsciously influencing what's spelled, which is hard to fathom, I think, for many people who actually watch it and watch someone typing without anyone touching them.
Starting point is 00:13:43 Well, they always like to point to, and I say they, you know, there's a group whom she's among the members. There's kind of a hardcore group of these almost professional skeptics that like to use the same talking points over and over saying that it's not scientifically proven. Well, it hasn't been scientifically disproven either. I mean, you could kind of flip it around that way. We've all had those nights, the ones where you laugh until the sun comes up, where conversations go places they've never gone before, and you walk away feeling closer to the people around you than you ever have in years. And one thing that can help a night like that along is psilocybin. It doesn't just open doors in your mind.
Starting point is 00:14:27 It opens them between people. This episode is brought to you by Schedule 35, the most trusted name in psilocybin products. Whether you're microdosing for focus and clarity or, taking a full recreational dose to reconnect with life. Schedule 35 makes every experience intentional, consistent, and precisely dosed. These aren't party drugs. They're connection tools for your mind,
Starting point is 00:14:48 your creativity, your relationships, and honestly, maybe a little bit for your soul. One of my favorite products from Schedule 35 is their microdosing tea, and it's really easy to use. And the first time I used it, I had a good friend in town who was going through a lot of stuff. And we filled up our tumblers with hot water,
Starting point is 00:15:05 just put in the tea bag, And it's just such a mellow, connective, present experience that the tea brings about. We went for a wonderful walk in the woods and mountains, and we're so able to connect and talk deeply about all of the things going on in our lives, our fears, our struggles, our hopes, without any pretense and without any distraction. And I think that's the thing in my life right now. It's so hard just to be fully present with someone without phones pinging or noticing something or, you know, something coming in the way.
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Starting point is 00:16:50 the first cozy sip. But sometimes the caffeine sends my nervous system into overdrive. That's why I've been loving mudwater. It has functional mushrooms and adaptogens and about one-seventh the caffeine of coffee. So I get steady focus and energy without the jittery. or crash. I've been drinking their original blend. It's cacao, chai, turmeric, and functional mushrooms, like a spicy hot cocoa, warm, grounding, and actually satisfying. For coffee shop lovers who just can't handle the full caffeine load anymore, mudwater is the version of your morning drink that you didn't know existed. Their starter kit is designed to give you everything you need to actually build a habit. You get a full-sized tin in your choice of OG, coffee, macha,
Starting point is 00:17:30 or turmeric, plus a free rechargeable frother, free gifts, and free shipping. Ready to make the switch to cleaner energy, go to mudwater.com slash tapes and grab the starter kit. Use code tapes and you'll get 43% off. The frother alone is worth it. That's right, up to 43% off with code tapes at MUDWTR.com. After you purchase, they'll ask how you found out about them. Please show your support and let them know we send you. Why is there this barrier in the first place for non-speakers to have to prove their authorship when we don't place that same type of burden on speakers?
Starting point is 00:18:14 And they'll say, well, we know that there were these cases back in the 1990s where, you know, X, Y, Z happened, these false sex abuse accusations, like how horrible it is. Well, but you never hear about all of the false sex abuse accusations that happen in the speaking world. You know, we don't force people to take lie detector tests before they're admitted to certain levels of high school to say, okay, are you going to cheat? We don't put these kinds of barriers, but yet that's what they are asking to be done for, again, all on speakers who are using this level of communication. So, you know, as far as the science and one of the levels of evidence that's actually used on the Asha website is experience, like practice. Practice experience counts as one of the three levels of evidence that they say should be considered. That's always ignored. What David is pointing to is that Ashes' evidence-based practice framework includes three distinct components,
Starting point is 00:19:16 the best available internal and external evidence, the clinical expertise of the practitioner, and the perspectives, values, needs, and experiences of the clients and caregivers. These components are not at all the same as scientific research, but Asha says they should be considered together when making evidence-based clinical decisions. So the experiences being reported by non-speakers and families and practitioners and coaches and paraprofessionals and principals are not meant to replace research, but they're meant to be part of the broader conversation. Yeah, so kind of basically the argument is if you don't have a lot of scientific studies in the situation, and this is a perfect example, but you have a lot of evidence in terms of experience, people who are utilizing,
Starting point is 00:19:59 whatever the methodology, that counts as evidence. So in our case, you know, when we have, like I said, thousands of non-speakers doing the same thing and parents reporting the same thing, practitioners, when there's this level of consistency, there's a level of scientific evidence that needs to be considered, at least to say, hey, there's something here, right? Not to rule it out so absolutely as they tend to do. So you've said this, and I've heard many people say this, that the studies often cited in like anti-spelling debates are outdated. And I know you've written extensively about how they continue to shape the conversation. Can you walk us through how the research has evolved, you know, from the early studies on facilitated communication to the work being done today on spelling
Starting point is 00:20:44 methods where people are not touched and where you think the evidence currently stands? When we pull ourselves back and kind of look at the world of autism in general, that's kind of a relatively new area to be studying for us to be understanding, to be considering. as a society. For so many of us, you know, I'm the Gen X, I'm 60. I remember when Rain Man came out. And for me and so many others, we had never heard of autism. So that was really eye-opening. And for so many, right, that was the base level of Utah or autism. People would think of Rain Man. And that was 30, 40 years ago, not a very long time in the scheme of things. So now you kind of layer in, non-speaking autism with that.
Starting point is 00:21:29 And the work that particularly has been done building on facilitated communication, which really started and grew in the 90s, and was becoming pretty accepted in a lot of areas, including academic areas, Syracuse, among them, until there was this pushback, until there were these small studies and some of these controversies
Starting point is 00:21:52 that essentially kind of squashed it and tainted the turroupes. terminology and the practice, which I know families that use it because they have non-speakers who do require that level of support. And that level of support is what gets attacked, even though, again, with so many other disabilities, support isn't attacked in the same way. Yeah, it's so true. And in so many other instances, the same standard is not applied, right? So there's countless examples. You know, there's so many. But I think the one that a lot of people can relate to is, you know, if someone's using a walker or, you know, requires assistance with a walker, and then you took it
Starting point is 00:22:28 away and said, okay, now walk for me. And, you know, they couldn't. You'd be like, oh, well, you never could walk in the first place. You know, like, this isn't really, you know, you can't really do that. I mean, I even think about physical therapy when you're first rehabilitating, you know, a serious injury and moving your foot that's maybe been a cat's for months, you know, and you need physical therapy or a doctor to help you touch your toes or to activate that part of your body. There's the need. for physical intervention, and we don't question it. Yeah, you don't even think about it. Right.
Starting point is 00:22:58 It just comes with it. The whole idea of prompting as well, or, like you said, support. You see it in all forms of, like you said, whether it's physical therapy, speech therapy. You know, there are times when they actually manipulate the mouth. You know, they have to try to get them to form words. But no one cries out like, oh, they're influencing them. You know, that's part of the therapy. Yeah, I mean, it really does seem like a double standard.
Starting point is 00:23:22 And I want to give you a chance to speak about one of the central studies cited in the New York Times article. A 1995, like 30-year-old message passing study involving seven adults that is still frequently presented as definitive evidence against authorship, meaning who's writing the words. Just to summarize for people out there, the non-speaking participant and the facilitator were sometimes shown different images. In one example, the participant saw a telephone while the facilitator saw a hat. and when the participant was asked to identify what they'd seen, the response was had, the image shown to the facilitator. And researchers interpret that result as evidence that the facilitator was directing the communication. But from your perspective, how do you understand the result of those earlier studies? And why might a non-speaking person not be able to demonstrate authorship under those testing conditions?
Starting point is 00:24:14 There's a lot of reasons why it doesn't happen. Again, the neurology for autistic individuals, and particularly for non-speaking individuals, is frankly just really different than a lot of neurotypicals. One of the reasons that they struggle with speech in the first place is apraxia. And, you know, in general terms, that's a brain-body disconnect where basically the body doesn't do what the brain wants it to do. Or vice versa, the body will be doing things that the brain doesn't want it to. And it's something that you hear non-speakers, including my son, talk about all the time. And I think it's those who are familiar with autism also are familiar with how important regulation plays in terms of their performance and being able to focus on certain tasks. And again, this is presuming competence, understanding that they understand that they're being tested.
Starting point is 00:25:10 So once they get in this environment, it's very easy for, that support to collapse and for them to not be able to execute these motor skills that ordinarily they would be able to do. And the analogy I would use is someone who can make 50 free throws in practice, but then in the big game, it's time for a game-winning free throw and they clank it because the pressure is on and they're not able to do it. Now, there's other factors. I'll give you a quick story in terms of how this played out for us. Because when we were fighting our school district and our school in our situation,
Starting point is 00:25:50 they tried to implement the message passing test with Stone. So we went through the whole drill. And what was interesting was when we got home, I asked Stone, how do you think it went? And he said, I think it went great. I said, well, why do you think that? He said, well, I got them all wrong. I said, so you intentionally got them wrong?
Starting point is 00:26:12 said, why did you do that? And he said, because I don't want to go back to school there. Like, I don't, you know, I don't want to be there. That's so funny. Right? Like, that's very strategic. And again, he had a very good reason not to want to go back. Yeah. If he hadn't done that, all those other factors would have held true that, look, this is a very stressful situation. Imagine being unable to communicate for 16 years or however many years, depending on the non-speaker. And you're finally unlocked. You're finally found. this tool, you're able to point to letters, you're able to talk about all these things you've been unable to for your whole life. And then someone comes along and says, I don't believe you. I don't
Starting point is 00:26:52 think you're actually doing that. You have to prove that you're actually capable of doing this 100% on your own. And if you're unable to do this in this test, we're going to deny you that right forever. How do you think most people would respond to that type of a pressure situation? regardless of their neurological wiring, as we have talked about, that puts them under severe stress. And one more interesting thing to note about that 1995 study is that while some interpret the non-speaker spelling with the facilitator saw as evidence of facilitator influence, many others see it as evidence of telepathy.
Starting point is 00:27:31 Like, it seemed weird because it was actually showing telepathy. So, yeah, do you have any thoughts on that? You hear reports of that. Like you said, it kind of opens up, conversations about telepathy, whether or not there's some type of non-local communication that could potentially be happening. Is it, are they just on the same wavelength? There's like a lot of questions there. I don't think they're necessarily answers. I would turn it around and say, we know that there are multiple situations, again, including
Starting point is 00:28:05 Stone, where he has shown the ability to work with multiple communication parties. partners and answer questions and not just answer questions, more importantly, composed original works, creative works, songs, poems, all kinds of things that are uniquely his voice. And that's what I look at. Like, again, it'd be the consistency of someone's voice. Kind of similar to what I think you have to do now in the AI age, particularly in the academic world is when they're reading papers, they're like, okay, does it sound like them? Is this sound like, you know, their level of work? Are they capable of this? Or is it, you know, is there a reason for a red flag,
Starting point is 00:28:50 basically, is what I'm saying. Okay. And then another point in the article that I love your response to is, it attributes facilitator influence to what is known as the ideomotor effect, right? Like this idea that a person can make small unconscious movements that guide an outcome without realizing they're doing it, which for anyone who knows anyone with apraxia, even huge clues or cues, vocal cues, pushes, grabs to help someone stand or move forward, you know, gentle, of course, aren't responded to. So I guess the idea that someone with apraxia could be queued subtly is such a disconnect to like what the issues in the body are and what the reality is. But anyway, I digress. David, can you share your thoughts about whether the idio-motor effect has actually been shown
Starting point is 00:29:38 to explain what is happening between a non-speaker and a communication partner. I feel like that that's not very strong argument because it's one of the things that's similar to the message passing test. And when people call it the so-called gold standard, it's just because you say it enough times, it doesn't make it true. If you really look at what the idiomotor effect is and what the studies have shown, it hasn't really proven anything in terms of influence from one individual to another. it was really focused on your own effect on yourself in terms of the idiomotor effect.
Starting point is 00:30:14 And so, like, there's one study which basically the researchers said, there's just not enough there to conclude that there could be influence. But it's been spoken about so often. And then, again, people kind of take it as the gospel. Like, oh, of course, you know, there's got to be some type of subconscious influence that's going on there. You know, like your eyes are, you know, you roll to the right, rolls of the left. I mean, they take it to the level that's just, I think, absurd. Let me back up and put this way. So you don't think that the non-speaker is competent enough to spell on their own
Starting point is 00:30:49 or author their own thoughts, but somehow they're sophisticated enough to interpret these uber sensitive cues that no one else is picking up on. Like, they haven't been proven, but yet somehow like you have this unspoken language. Again, it makes no sense. And so beyond questioning whether the idiomotor effect can actually explain this communication, there's also research that looks more directly at whether non-speakers are selecting the letters themselves. And, I mean, in the telepathy tape's film, which will be coming out, you know, in the next six months, we follow people learning to spell who actually like say the letters are learning it and they're pointing.
Starting point is 00:31:30 It's pretty hard to hand wave away someone who's looking at. at a letter, pointing to it, and saying it out loud. Yeah. And the one point I do also want to make, again, regarding the message passing test. And I know that she references one study. I mean, there's lots of other studies that you can reference. You know, there's the eye-gazing study that Jazzwell did a few years ago at University of Virginia that supports the argument that non-speakers are authoring their own communication using
Starting point is 00:31:57 the letter boards. Okay. And that's in reference to the 2020 University of Virginia study, which used eye-tracking. with nine experienced non-speaking letterboard users who pointed independently while an assistant held the board. And participants often looked toward the correct letter before pointing to it. And researchers found that the speed, accuracy, timing, and gaze patterns made facilitator queuing unlikely. And those conducting the research suggested that the participants were actively selecting their own responses. There's a lot of different studies out there.
Starting point is 00:32:28 It just depends on where you want to look. But they love to talk about the message passing test and call it the gold standard. But it's not. It's not even a validated study. I mean, it's not even included in the mental measurements yearbook. And it was considered to be one of the key guides regarding psychological and similar assessments and tests. It's not listed. It's never been listed in there.
Starting point is 00:32:55 So you can't go online and find, you know, what's the purpose? proper way of administering this test because it doesn't exist. There is no standard. There's no ideal scoring metrics or anything like that. So they lean on this because they talk about how this is the gold standard. But as I talked about earlier, if you know you're dealing with a population who has extreme issues and challenges with their motor control already. If they're already struggling with this, and you know that when they're put in a stressful situation, it's more than likely that this motor control is going to collapse.
Starting point is 00:33:40 Well, the message passing test is like the perfect test. Because it looks good on the surface, but you know that probably 95, 100 times, they're not going to be able to do it the first go around. Now, I will say, it's not to say it hasn't and isn't passed over time. There are examples of non-speakers who have passed it, you know, and sometimes it takes practice, just like anything else, right? You have to be put in that situation, that unique situation, before you feel comfortable
Starting point is 00:34:08 and confident enough in it. So it does happen, but like I said, if you want a great one-off, hey, let's put these kids in a really stressful situation, tell them this is going to be their one-shot to communicate, and if they don't, ha, we showed them, even though, again, like I said, it's not even accepted anywhere. And they're the ones who love to cry out pseudoscience. You know, this is the epitome of pseudoscience. Yeah.
Starting point is 00:34:35 Okay. And then another huge important component to these discussions when we're told to, you know, quote unquote, trust the research, is to ask a very important question. Who's behind the research, right? And who's funding the studies? It has made me so confused. And it honestly just boggles my mind that there's not more people and journalists like uncovering the money behind this research and the stakes at keeping spelling down.
Starting point is 00:34:56 Absolutely. That question, I think, feels especially important in light of a new study published in April that examined 119 autism intervention papers published across eight applied behavior analysis journals. And it found that 93% of the studies included at least one author who also worked as a paid ABA provider or consultant. Yet only 8% disclosed any conflict of interest. And among the papers that explicitly stated there were no conflicts, researchers identified undisclosed clinical or consultancy ties in 93%. To me, that's a staggering unethical thing that is being overlooked when we look at who
Starting point is 00:35:35 is funding some of the research around autism and spelling. And obviously, a conflict of interest does not necessarily mean that a study's findings are false. But it does show why we need to look beyond the phrase the science says and ask who is producing the research, what financial or institutional incentives may be present, and which of those outcomes and questions may support the organization who is paying for the research? So how closely do you think we need to follow the money, you know, when evaluating the research shaping the lives of non-speaking autistic people? I've talked about this more in conversations. I don't think I've written about it, but as far as studies and pointing to these big academic studies, I think people need to realize, like you said, who funds
Starting point is 00:36:16 them. And it's not to say that they're all bad or they're all necessarily biased. But when you're looking at, I'm calling it an industry, a community, as relatively young as the non-speaking, the spelling to communicate industry, I kind of liken it to a startup industry versus these, you know, the big industry titans. So, you know, most spelling to communicate or spelling methodology or RPM practitioners, these are individual practitioners. You know, they're not part of some big VZ-backed or corporate-backed conglomerate, raking in hours and hours and hours of billable money that's being funneled through insurance.
Starting point is 00:36:58 And like that, these are just individuals. So these are really kind of startups scattered around the country and now around the world. But they're not the ones who are going to have the money to be able to get together and say, hey, let's work with UC Davis and do this study to try to show that our kids really are authoring their own, communication, whatever that looks like. It takes money to do these studies. Right. And I think this points to a
Starting point is 00:37:22 larger tension that we return to often on the show. Scientific testing can serve a really important purpose. But in a strictly materialist framework, only things that we know how to measure or understand can be looked at as real or meaningful. And so when we do that, we risk overlooking, you know, the lived experience or the lived evidence unfolding in front of us, you know, which is like changes in a person's happiness in a family, diagnoses coming through when someone's writing about what hurts their tummy or what they want to eat or their fears. It can deeply impact someone's confidence, their relationships, what they're engaged in, what they want to study, their sense of self.
Starting point is 00:37:59 And the self-diagnosis that I've seen over and over again, you know, working with so many different non-speakers on set and on the show when it's like, I need to go outside, I need to go have a drink of water. This is hurting my stomach. I shouldn't have this. I want to go. I mean, those things. are so important, and you can't just ignore them.
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Starting point is 00:42:08 And I think about this every day because I live it. You can't fake happiness. You can't fake confidence. And when I talked earlier about how life-changing it's been for Stone, of course it's been life-changing because of the school axis. He's getting a 3.85 GPA in high school-level education. That alone is reason to celebrate. But beyond that, the joy that he brings to this world now, the way that he shows up, he used to be one of those kids, and I'll blame him. He would sit in the living room by himself with his eyes.
Starting point is 00:42:44 iPad, watching YouTube videos because that was his world. And he knew he had no way of accessing relationships with others. He has that now. And everyone who sees him and meets him sees that. I mean, because he spreads that joy. The other point I just wanted to make is, you know, we talk about the role of influence in communication, and whether it's facilitated communication or, again, when there's a communication partner. And I just want to reinforce that influence is always at play at any level of communication. But I think the key is having guardrails in place and having really strong methodologies,
Starting point is 00:43:21 having strong ethics in place. I don't know a single parent that would want to be influencing their kids' communication. What's the point? I think I calculated, I've spent something like 2,000 hours, at least, with Stone since he began communicating. That's an incredible investment,
Starting point is 00:43:42 and I'm so grateful for it. But do you really think I would be doing that if I just felt like we're just sitting here and I'm just, hey, Stone, why don't you say this? I mean, I don't even know how that would work. You know what I mean? There's so much investment that goes into this and so much reward that you just, like I said, you can't fake that. Yeah. So were there any experiences that you maybe had in early days when you were communicating and he said something that you were like, you know, surprised by or thought, whoa, that is definitely not my thought. Oh, yeah. When he really became. came open and one of the things I'd always been interested in was, was he passionate about, right? That was a great frustration. Like I said, he was a kid who basically kind of sat on the couch and had his iPad and
Starting point is 00:44:27 I wanted to unlock what is his passion? And so once he was able to communicate, that was one of the first questions. And he said, my passion is learning, not what I expected. You know, he said, I love to learn. I want to learn more. I said, oh, that's great. well, I'll help you with that. What are your goals with education?
Starting point is 00:44:47 And he said, I want to go to Harvard. And I was like, Harvard. I mean, like, Harvard's great, you know, great. But, like, we had never talked about Harvard. I'm an Oregon duck. My wife is a Wisconsin badge. You're like, you know, we're a big sport. That was out of the blue as far as I was concerned.
Starting point is 00:45:03 And again, it was so early in the journey at that time that even though I had presumed competence, I mean, I was still, it took a while, you know, honestly, to ramp up just like how aware, how smart, like how dialed into life he had been, because there was just that systemic bias. Even I had a certain degree. So it's part of me, I'm like, wow, I can't believe he even knows about Harvard, let alone the prestige and all that, which is, again, so bad in hindsight. But that's, to me, a perfect example of, like, I was not expecting that. I'm curious if his knowledge is contained to what he's learning in the school system, or if it's ever kind of surprised you by extending beyond what he's learning.
Starting point is 00:45:44 That's a great way to phrase it. I'll answer it this way. Again, his depth of knowledge and breadth of knowledge has surprised me at various times. Whether it's telepathy, whatever you want to say, accessing information somehow, we know that he didn't get it in school. Like I said, he was in this inclusive, quote-unquote, intention. ed environment where there was no education going on. So he wasn't taught anything. Now he's learning all kinds of things academically, but he did certainly have knowledge of things that I had no idea
Starting point is 00:46:25 that he would have had. The best example for that was early first lesson, his spelling lesson. With Don Marie, it was about Benjamin Franklin. So he was going through the typical S2C spelling words, answering kind of known, like, what did Benjamin Franklin fly when you discovered electricity? He'd spelled kite or something like that. But then she asked him the question that wasn't in the lesson, which was, you know, who were we fighting in the revolution? And he spelled out the British. And that was my, oh, wow.
Starting point is 00:46:59 That was the moment like, this is crazy. He is so smart. Like I said, we were off and running. That was convinced me, like, how much he's been absorbing, learning. somehow, some way that, again, we had no idea because we were just oblivious to everything. So awesome. And then were there any other things that you learned about once he was openly spelling that made me shocked you or surprised you? Yeah, right before. All I knew is that he really loved spending a lot of time on YouTube. Primarily, his friends were the little
Starting point is 00:47:33 Einsteins. They were Disney Jr. characters. But what was cool is so we would notice, though, And he's subsequently shown us this, that he was learning foreign languages while he was watching Little Einstein's. So we would notice Little Einstein's in Russian or Spanish or different languages. And I was like, well, I wonder if he's kind of teaching himself, you know, these languages. Because I knew that he'd already memorized them by then, because he'd watched them so often and was probably trying to figure out a way to apply, you know. And he said, yeah, he's told us later, yeah, that's exactly what I was doing.
Starting point is 00:48:10 Gosh, it never gets old. So he was teaching himself languages. And then, I mean, how cool that you could actually verify that once he was open. You know, I always felt horrible in terms of not being able to connect from a conversational style. But my wife and I, we never stopped talking to him. You know, I used to tell him, you know, someday, because I did believe that I knew that there were cases, not necessarily with spelling, by another cases of non-speakers who were able to communicate later. I said, you know, we're going to find a way.
Starting point is 00:48:39 It's going to get better. It's going to get better. You just got to keep believing as much as possible. Even when times, I wasn't sure if I believed it, because, again, it was hard. I won't deny that. But having those conversations and we just did a lot of stuff together. He loves the beach, loves the water. So just having that time together, I think, helped really build that foundational relationship.
Starting point is 00:49:03 that's just exploded now, you know, now that I'm his primary communication partner and what we're able to talk about and share and all of that is special. I mean, it's beyond words. It really is. And then on that note, you know, we get so many emails in our inbox from people who are really desperate for, you know, hope and really struggling. And I'm just curious if you have anything you'd want to share to those who are still searching for a way to connect and to communicate. Yeah, I mean, I would say, you know, to the parents, the relatives, the loved ones, and also to the non-speakers. I know that you are going to be listening to this, you know, whether it's in the car
Starting point is 00:49:40 with your parents driving around or whatever, absolutely keep the hope. I mean, it's possible. Like I've said earlier, there was a time I didn't necessarily believe or think that this would be happening at all. I can't emphasize that enough. And I don't want to say that it's going to happen 100% of the time. I can't make that guarantee. I don't know all situations and there's a lot of variables, but I do know so many success stories at this point. I've been so lucky to have connected with hundreds of other non-speakers and their families and hearing these similar stories, as I'm sure you have. Over and over, it never gets old. It's so incredibly special to hear when the breakthrough happens. Because I go back to like, And it's just, that's humanity.
Starting point is 00:50:34 Like, we are meant to connect with each other and to communicate. You know, just keep trying, believe in it. Sometimes the path takes a lot longer than you'd like than any of us would like. But, you know, you can definitely get there. And conversely, I would say to the skeptics, why are you so passionately against this? Why not give it an opportunity? Really, what do you have to lose? Because on a more serious note, again, you think about it's not only humanity that
Starting point is 00:51:03 we're talking about and communication being a fundamental human right. We're also talking about health and safety. And it's a proven fact statistically. There are studies have shown that up to 75% of autistic individuals have reported being abused. And that figure is especially high when you're talking about non-speakers. This is the most vulnerable population. Why are you worried about potential false sexual abuse accusations. That makes no sense. You should be more worried about these thousands of kids who are locked in classrooms, locked in other facilities with people who may have the opportunity to abuse them. And if they do, these kids have no way to report it, no way to communicate it. That is the scary proposition that I put out there. And that's not
Starting point is 00:51:59 hyperbole. That's just a proven fact. And so from a father's standpoint, from a human standpoint, think about that when you jump on your soapbox and scream about how they have to jump through these hurdles to have their voice heard. No. No, they need to have their voice heard. They deserve that. They deserve that dignity. I think that the work you're doing with your writing and advocacy is really helping pave the way and push us all in that direction. Like you are just a hero to, I think, so many.
Starting point is 00:52:31 Like so many others, I try to take the attitude of, hey, if I just help one family, that's worth it. That's one more voice unlocked. That's one more dream that can come true. And you can't put a price on that. Yeah. And I mean, thank you so much for taking the time to share this. And I'm just curious if there's anything that Stone would want to add. Let me ask, hold on.
Starting point is 00:52:50 Let me see, hey, Stone. And then Stone was able to interview with our producer. So, Selena, go ahead and take it from here. Hi, Stone. Yeah, so big. It's so nice to meet you. And again, for transparent, here's the keyboard that we use. Awesome.
Starting point is 00:53:05 And for the audience, you're holding up a cordy keyboard. Yes. Well, Stone, is there anything you want to say to start off? A day. A day. Stone is spelling, and David will read his response. The Stone said, yes, I'm totally excited. Oh, we're so excited.
Starting point is 00:53:24 Yes. And he said, I'm thinking this will help people. I think that you're right. I really hope so. That's right. And is there anything that you want to say to the audience? To yet. Stone said, yes, I'm more motivated to help non-speakers than ever.
Starting point is 00:53:41 I'm so happy to hear that. And on that note, is there a message that you have for non-speakers who might be listening? Yes, I want to tell them to keep up their hopes to communicate. Well, thank you, Stone. And I'm also curious if you have anything you want to say in response to the New York Times piece. To laugh. Yes, I think they need to do a better job showing non-speakers totally can communicate. Yeah, absolutely.
Starting point is 00:54:14 Well, thanks so much, Stone and David for sharing. And Kai, back to you. Well, David, just thank you and thank Stone for me. I know that so many people, including us, are just grateful for both of you. You're doing so much to move this movement forward. I am honored. Thank you guys. I appreciate the platform. I appreciate the work that you guys have done to bring visibility to this community is huge. There's no other way to put it. And for better and for worse, right? We know that it's brought controversy as well as support. But I believe that the support and the visibility is so worth it, that we're having these types of conversations that we're making progress with communication rights bills, like the one that's going on New York State, which is huge. I mean, that's a whole whole other show. You know, these things are happening, right? And that's so exciting and it's so needed. Yeah. And then, you know, since you mentioned the communication bill of rights in New York,
Starting point is 00:55:08 maybe just as a final note to send off people with, you know, an empowering way they can get involved or act. Can you just give us a quick update on, you know, where the bill stands and how people can get involved? Yeah. I mean, it's kind of in flux. But in New York State, last summer, the state legislature passed a bill to basically recognize all forms of communication for all residents, and that included letter boards, AAC devices, communication partners. And it passed the legislature 159 to zero, unanimous. Like, what in the world can do that today in this political age? I don't care of the state or whatever, right? So I moved to the Senate to vote on it in the Senate for the next session, which is they're still currently. in session, it's currently stalled right now because the head of the disability community
Starting point is 00:56:05 for the New York Senate, her name is Senator Fahey, unexpectedly at the last minute, while it was still in committee review, inserted two amendments into the bill, which said that it must be quote unquote valid communication method, which the definition. when there was follow-up questions, what does that mean? Apparently, that meant having a insurance billing code for it, which doesn't exist for spelling to communicate or these other methodologies because it's so new than, of course, insurance companies aren't rushing to embrace. So that excludes this very population that was meant to be included in the first place. So right now, they haven't put it up to a vote for the Senate. The House reinforced their commitment
Starting point is 00:56:58 to it. And now we're waiting. We're asking residents from New York, but beyond, to reach out to senators in the state, including Senator Fahey, to say, look, remove these amendments. Bring this to the Senate in its original form. The bill, you cannot get stronger consensus than 159. This is obviously the will of the people. Let the will of the people speak, not whatever special interests may have whispered in your ear at the last minute. Yeah, that was a perfect summary. Thank you so much. Oh, you're welcome. And for people who want to learn more, you have a substack that is so interesting, and I'm always amazed at, you know, what you're publishing there and how often.
Starting point is 00:57:37 So where's your substack? Yeah, it's coffer insights. And we'll link to that in the show notes. Okay, great. Yeah. And I've been doing my own podcast, which is the lighter side of the spectrum, because not everyone has the time where patients to read these 2,000-word essays. All right.
Starting point is 00:57:54 Awesome. Well, thank you so much. It's been such a pleasure. Okay, bye-bye. That's it for this episode of the Talk Tracks. But new episodes will be released every Wednesday. So stay tuned as we work to unravel all the threads, even the veiled ones that knit together are reality.
Starting point is 00:58:09 And please remember to stay kind, stay curious, and that being a true skeptic requires an open mind. To dive in deeper, subscribe to our backstage pass by visiting our website. With it, you'll unlock access to bonus content like telepathy tests. Ask Me Anything interviews with myself and guests. You'll be able to enjoy the podcast ad-free, connect with other members on our telepathy tribe discord, and hear and see exclusive content from the telepathy tapes vault. Visit our website at the telepathy tapes.com for more info on how to subscribe to our backstage pass. Thank you to my amazing collaborators.
Starting point is 00:58:42 Producers Catherine Ellis and Selena Kennedy. Technical directing audio mix and finishing by Jeremy Cole, opening and closing music by Elizabeth P.W. And original logo and cover art by Ben Kandora Design. I'm Kai Dickens, your executive producer, writer, and host. And thank you again to the sponsor of this episode, Schedule 35.

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